Team Teddy Bear

one week until the 2011 walk

2011-09-17T21:42:00.001-04:00

The 2011 Walk for PKD is only one week away. Thanks to your generosity, our team has already raised more than $2500 to help in the fight against Polycystic Kidney Disease. I truly appreciate the support we have received not only this year, but over the past six years, from all of our friends and family.

If you have time next Saturday morning, please feel free to join us in our walk at Bedford Hills Memorial Park in Bedford Hills, NY. Registration starts at 9AM and is free. We always have a great time and have been thrilled to see our team grow year after year.

If you want to make a donation, or just keep up with our progress, you can follow our team at http://www.pkdcure.org/teamteddybear2011, visit my personal page at http://www.pkdcure.org/helpbobfightpkd, or check out my blog at http://teamteddybear.blogspot.com.

Thanks again,

Bob

2011 Walk Letter

2011-07-24T20:56:00.003-04:00

The Hudson Valley Walk for PKD is coming up two months from today. Following is the letter that I sent out to friends and family about a week ago. If you are reading this blog and know someone who has had their life impacted by Polycystic Kidney Disease, then I urge you to please donate to me or any of the thousands of other walkers who will be walking to raising money for PKD Research.

Dear family and friends,

The 2011 Walk for PKD is coming up on Saturday, September 24^th. This will be our sixth year participating as Team Teddy Bear, as we strive to raise funds and awareness in the fight against Polycystic Kidney Disease. PKD is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide.

My wife, Jeanne, received a kidney transplant 13 years ago due to Polycystic Kidney Disease. When a person has PKD, cysts will grow on that person’s kidneys, inhibiting the kidney’s ability to do its job to remove toxins from the body. Over time, the kidneys will function less effectively and for many people with this disease, their kidneys ultimately fail them. For Jeanne, this happened at the young age of 31. Thankfully, we were blessed that Jeanne’s Aunt Susie was willing and able to donate a kidney to her in May of 1998. The transplant was a complete success. Unfortunately, a kidney transplant does not last forever and is only considered a treatment for kidney failure and not a cure. This fact became a reality for Jeanne in August of last year, when she went into kidney failure and began undergoing four hour dialysis treatments three times a week in order to remove the toxins from her blood that her kidney could no longer filter out.

Our search for a new kidney for Jeanne at first proved to be difficult. A number of people stepped forward and agreed to be tested to see if they could be a kidney donor for Jeanne. Unfortunately, in all cases, either the person was not able to pass the required rigorous health screenings, or their kidney was not an acceptable match for Jeanne. In my case, I was able to pass the health screenings, however since my blood is type AB and hers is type O, my kidney would not be accepted by Jeanne’s body. Thankfully, just in the past several years, a new option has been made available for people in this situation. The National Kidney Registry has created a database whereby incompatible donor pairs can be entered into a database and a software program is able to match up incompatible donors and recipients with others who they are compatible with. In early February of this year, we received a call from our transplant coordinator that this database had produced a match for us and that we would have the opportunity to be part of a ten person kidney donation chain. By the end of February, I had successfully donated my kidney to a woman from Brooklyn and Jeanne had received a kidney from a wonderful woman from Florida whose daughter from California (who also has PKD) received a kidney from someone in Texas. The whole process seems absolutely incredible and miraculous and it still gives me chills and chokes me up every time I think about it. Today, I am fully recovered from the surgery and Jeanne is doing fantastic and has more energy than she has had in several years. You can read all of the details about our transplant experience on my blog at http://teamteddybear.blogspot.com.

As in past years, I am leading up a team of walkers to attempt to raise money for the PKD Foundation that can be used to help find new treatments for PKD that will help future generations of people who are afflicted with this disease. Last year, our team of 21 walkers raised just under $6000 walking here in the Hudson Valley and in Chicago. This year I have set a team goal to raise more than $6000 to fund vital patient education and research into a treatment and a cure and I would like to invite you to be part of that, either by making a donation, or by joining us at the walk in Bedford Hills, NY on September 24^th.

If you wish to help in the fight against PKD, you can make a secure donation online at http://www.pkdcure.org/helpbobfightpkd or visit my team page at http://www.pkdcure.org/teamteddybear2011. Whatever you can give will make an impact - no donation is too small!

Thank you for helping in the quest to find a cure for PKD! I truly appreciate your support, prayers and assistance!

Bob

another link in the chain

2011-07-18T18:25:00.003-04:00

A few months back, I posted about Barbara, who is Jeanne's kidney donor, and Karen, who is Barbara's daughter. I am grateful that we have had the opportunity to connect with each other and hope that the opportunity to meet in person presents itself someday.

Today, I learned from Karen that she has found out who her kidney donor is. Fed-Ex has made a YouTube video describing the story behind his donation, which you can watch below. It's a wonderful story on its own, but it is really is even more wonderful due to the fact that his act of kindness helped not just the person he set out to help, but Karen and Jeanne as well.

...and I think to myself - What a wonderful world!

four months later

2011-06-25T05:51:00.002-04:00

Today marks four months from the day of my surgery - and about 10 weeks since my last blog post. I'm happy to report that everything has gone very well over that time. My belly button has slowly but surely healed itself back into a fairly normal belly button. If you look closely, you can see a little bit of a scar, and maybe the belly button is a little bit deeper than it was before but, for the most part, I think it would be hard to tell that they pulled a kidney through there not long ago.

My energy level is pretty close to back to where it was before. At this point, the only thing I can really notice is that if I am performing an activity that requires a lot of strength (say, clearing the yard of heavy branches) then I do get run down quicker than I think I should. Of course, it could just be I am getting old, too. :-)

It appears that I will not be meeting up with my kidney recipient any time soon. I had made an initial inquiry through my transplant coordinator about trying to arrange a meeting with her, and initially, the response I got was that she was interested in getting together. The only issue (at least as I understood it) was that since she spoke little English, we would need to have a translator along as well. At that point, the plan seemed to be that we would wait a few weeks until she was past that initial post-transplant stage where you are trying to avoid public places, and then I would head down to NYC during one of her clinic visits and we could meet. Weeks went by and I hadn't heard anything until the other day when a social worked left me a phone mail message that she had decided that she did not want to meet up - at least not at this point in time.

I found myself more disappointed than I expected to get this news. After all, when it comes down to it, the whole point of giving up my kidney was so that Jeanne could get one for herself - the fact that somebody else benefited as well was just a bonus. But, I guess I have found it so exciting and uplifting to have connected with Barbara (Jeanne's donor) and Karen (Barbara's daughter) - and so far that has only been through email/Facebook. So, I figured an in-person meeting would be even that much more of a wonderful experience. But, it appears as if that is not to be. I truly hope and pray that she is doing well, and that it is not her medical condition which is preventing us from getting together.

So, enough about me - how about Jeanne? After all, this whole ordeal was really about getting her back to health. I'm happy to report that Jeanne is truly doing fantastically! Her energy level is better than it has been in years - probably since before Brian and Jason were born. Her creatinine levels are down, her hemoglobin levels are up, and she is back to getting involved in everything (school activities, charities, church organizations, etc.). On one recent family hike she mentioned "Hey look - I'm waiting for the kids to catch up to me, instead of the kids waiting for me to catch up to them". Overall, she's down about 75-80 pounds from a year ago before her surgery - at least half of which was simply water weight that her body was retaining because her kidneys could not get rid of it. And, best of all, no more dialysis!

Probably the best sign of all was earlier this month when I went away for a few days to San Diego to give a talk at a workshop. When the trip was originally planned back in January, we were making all sort of arrangements for people to help Jeanne out while I was away. But the February transplant changed everything and by the time the trip came around, none of that help was necessary and she took care of the home-front all on her own (the only exception being for the one night she got a sitter so she could attend the Board of Education meeting). When I arrived home, she was still doing great, and it was me that was wiped out from the red-eye flight I took back home.

followup #3

2011-04-04T19:57:00.002-04:00

I had another followup visit with Dr. Del Pizzo today. He's happy with how the wound is healing. I will need to continue to pack the wound on a daily basis, though, and probably will for quite a bit longer. Apparently, I will need to continue to pack and cover the wound until my belly button gets back to a normal belly button depth. I guess I had been assuming that I was just going to have this fairly deep belly button for the rest of my life, but I learned that eventually it will work its way back to a normal size. At the moment, it seems like it's still quite a ways from normal size, even though it has progressed quite a bit over the last two weeks.

I continue to have my up days and my down days in terms of energy level - although as time goes on the ups are higher and the downs aren't as low. I was able to get through a 90 minute baseball practice yesterday with the baseball team, but was pretty wiped out in the evening. Dr. Del Pizzo said that I am free to do pretty much anything that my body feels up for at this point - the only things to avoid are activities that stress the abdominal area.

I will still need to see Dr. Del Pizzo at least one more time. I'm to email and/or call him with my progress in the next week or two. Depending on what he hears from me, he'll either have me down again right away or wait a little while longer to see how things continue to progress. If all goes well, it will be just one more visit to check things out after it is all healed.

A week without a doctor's visit

2011-04-02T07:18:00.004-04:00

Yes, it is true. My family managed to make it a whole week without a single one of us visiting a doctor! No clinic visits, no surgeons, no lab work, no visits to the ER, no nephrologists, no sick kid visits to the family doctor, no hospital stays, no dentists, no eye doctors, no chiropractors, and, of course, no dialysis!

Now, to those of you who lead relatively healthy lives, this may not seem like a big deal to you. But, I can tell you that this has not happened in our house since the last week of May, 2010 - almost a whole year ago! I know this because with the overwhelming number of medical bills and insurance paperwork we get at our house, I find I need to use a spreadsheet to keep track of which bills have been paid, which ones haven't and which ones the insurance company screwed up. My spreadsheet for 2010 has 222 lines in it - thanks to four ER visits (three of which resulted in hospital stays), two fistula surgeries (one inpatient, one outpatient) and a whole host of dialysis sessions, all piled on top of the more routine medical visits.

I guess the most important factor in this momentous event is that Jeanne is down to followups at the clinic once every two weeks. One reason for this is that everything seems to be going great with the new kidney. Her creatinine levels are superb and it looks like the new kidney is going to work great for Jeanne (thanks, Barbara!). The other reason is that Jeanne has been through this before, having had her first transplant back in 1998. She's been following up with the same doctor at the same clinic for 13 years now. They know her and they know they can count on here to do the things she needs to do to keep the kidney going strong - most importantly, taking her medications at the right times and right dosages.

So, for me, this is a big deal. And the best part is that as time moves forward, I can look forward to more and more such weeks thanks to a wonderful sequence of events that allowed us to become part of a kidney donation chain that never would have been possible even a couple of years ago.

PKD Seminar in NYC tomorrow

2011-04-01T13:10:00.001-04:00

Sorry for the late posting....

Don't miss the most comprehensive PKD educational seminar for 2011-there will not be a National PKD Convention so be sure to register for this event by March 31st.

The Polycystic Kidney Disease Foundation 6th Annual Metropolitan Seminar

Sponsored by the: ARPKD, Hudson Valley, Long Island, New Jersey, and New York City Chapters; along with the Children's Hospital at Montefiore

Saturday, April 2, 2011

Registration/Check-in: 9:30am

Speaker Sessions begin promptly at 10:00am

Seminar will conclude around 3:00pm

Please click hereto register. On-line pre-registration closes on March 31, 2011.

*Walk-up Registrations will still be accepted the day of the seminar starting at 9:30am.

Location: Montefiore Medical Center

Cherkasky Auditorium

3415 Bainbridge Avenue @ Gunhill Road

Bronx, NY 10467

http://www.montekids.org/guide/directions

Registration Costs: $15/person or a Family Package of (4): $50.00

Includes a light lunch and beverages (coffee/tea - regular and decaf, water)

Speakers:

Dr. Enver Akalin, MD - Medical Director of Montefiore Renal Transplant Program, Professor of Medicine at Albert Einstein College of Medicine, Bronx, NY

Topic: Update on Kidney Transplantation

Dr. Carolyn Bauer, MD - Director of Montefiore Kidney Care Program, Assistant Professor of Medicine at Albert Einstein College of Medicine, Bronx, NY

Topic: Current State of Clinical Trials in PKD

Dr. Beatrice Goilav, MD - Pediatric Nephrologist at Children's Hospital at Montefiore, Assistant Professor of Pediatrics at Albert Einstein College of Medicine, Bronx, NY

Topic: PKD in Children

Rhonda Warshaw, PhD - Moderator; Clinical Psychologist in private practice, Woodbury, NY; transplant recipient

Topic: Patient Panel - Living with Chronic Disease, Patients - TBD

Dr. Irina Barash, MD, MS NYU Division of Nephrology

Topic: Brand new PKD trial soon to be available to patients. A multicenter, placebo-controlled worldwide study sponsored by a major pharmaceutical company to test the safety and efficacy of an investigational drug in patients with PKD is coming to the New York University Langone Medical Center next month.

Lunch Sessions:

Zari Ginsburg, MS, RD, CDN

Topic: Better Choices for a Kidney Friendly Diet

Charles J. Newman

Topic: Insurance Issues for PKD Patients

Again, to register for this event, please click here.

For any further questions, please contact Susan Caplan, NYC Chapter Co-Coordinator at 917-299-8200.

There will be no National Convention this year - so these are great opportunities and the best way for you to get the most current information on PKD!

Pinewood Derby

2011-03-27T19:23:00.007-04:00

Friday night was Brian and Jason's first Pinewood Derby as Cub Scouts. They each made the finals for the Tiger Cubs competition. They both enjoyed themselves immensely, as you can probably tell from this picture.

Brian also received an award for "Best Scout Spirit Car" which he shows here:

TJ stepped in to help with the running of the races. I was very proud of how he came forward to help out without being asked.

A big thanks to Bron for taking over and running this for me. I had originally volunteered to run this event, but I had to back out after Jeanne and I got the good news about being able to become part of a kidney donation chain!

second post-surgery followup visit

2011-03-21T19:31:00.003-04:00

It was back down to NYC today for another visit with Dr. Del Pizzo. The good news is that there is no longer any sign of infection. The bad news is that my wound is still going to need some more time to heal. Since my last visit, I've been packing the wound with gauze to help it drain. Well, I guess I need to pack it a little more tightly, so I need to start using a larger size gauze and push it in a little tighter each time I change the dressing. I'll go back and see him again in two more weeks.

Today was certainly my best day since the surgery. I had a meeting at TJ's school, drove back and forth to NYC for the doctor's appointment, brought the kids to CCD, did some food shopping and still don't feel completely drained. Tomorrow, I'll be going back into the office for work for the first time since the surgery, so I hope the good energy levels continue.

Jeanne's been doing pretty well also. Her biggest issue right now is that one of her muscles that got pushed around pretty good during the surgery is bothering her a bit. But, the new kidney seems to be doing great! And, she drove for the first time since the surgery today. She'll still need to minimize the amount of time she spends in public places for a few more weeks, but at least she can now do a quick errand or two if she needs to.

Meet Barbara and Karen

2011-03-17T05:58:00.002-04:00

In my previous post, I had mentioned that Jeanne had gotten a call from Marian, our transplant coordinator, stating that Jeanne's donor would like to be in touch with her. Since then, we've made contact (via email and Facebook) with Barbara, who donated the kidney that is now inside of Jeanne, and Karen, who is Barbara's daughter who received a kidney as part of the chain. They both seem like wonderful people.

Barbara, as it turns out, is not from California, as we originally thought, but from Florida. Barbara flew out to California, where her daughter lives, to participate in this kidney donation chain. Sadly, Barbara lost her first husband to an aneurysm due to PKD (Polycystic Kidney Disease, the same disease that Jeanne has) at the very young age of 25. You can learn more about Barbara from the comment she left on my previous post.

Karen, Barbara's daughter, also has PKD, which she inherited from her father. As has been the case with Jeanne, the disease has impacted her life at a relatively young age. Karen is now about the same age as Jeanne was when she got her first transplant. Karen has been very involved in the PKD Foundation and its activities - including being both a chapter coordinator and a walk coordinator when she lived in Utah a couple of years ago. You can learn more about Karen from the blog that she and her husband put together, or from this video I googled up last night.

Some interesting things I've learned from Barbara and Karen:

Apparently, Jeanne was not the originally planned recipient for Barbara's kidney. Something happened along the way which made the original recipient unable to get Barbara's kidney, opening up the opportunity for Jeanne. Something similar must have happened in my case as well, as I was originally told that my kidney was destined for a "he" and it turned out that it went to a "she".
It turns out that Karen and Jeanne both attended the same PKD Convention at Disney back in 2007. So, we were all within a few feet of each other just a few years ago!

It's been very exciting to get to know Barbara and Karen - and there is something about Karen and Jeanne both having PKD that seems to make it even more special. I guess because of everything I have seen Jeanne go through, I feel I can relate to what Karen has had to deal with, and it makes me very happy to know that she was able to obtain a kidney and avoid going on dialysis.

In the meantime, I seem to be improving. Best as I can tell, my infection is healing OK - I'll be back to see Dr. Del Pizzo on Monday to find out for sure. Yesterday was my best day yet since the surgery- I was able to make it though the entire day without even so much as a Tylenol. I can feel my energy starting to kick back in more every day and my appetite is getting back to normal. I'm still working from home, but am able to put a full day in now. I just need to keep reminding myself to pace myself, so I don't get too wiped out.

first post-surgery followup visit

2011-03-12T09:11:00.004-05:00

Yesterday (Friday) was my post-surgery followup visit with Dr. Del Pizzo. I pointed out to him that I had been seeing an increasing amount of discharge from my incision over the past couple of days and wasn't sure if it was something to be concerned about or not. After poking around my belly button for a couple of minutes (ouch!), he informed me that I have a slight infection at the incision site. He subscribed some antibiotics for me and gave me some instructions for how to change the dressing covering the incision 1-2X per day. I'll be going back to see him again a week from Monday so he can make sure it is healing better.

So, it looks like it'll be a little longer before I'm back in action, unfortunately.

While I was down there, I did stop by the transplant clinic for a (very) quick visit with Marian. Since I stopped there first, I told her everything is going well (which mostly it is) and she was happy to see me up and around.

Later, after I was back home, Marian called and talked to Jeanne to let her know that her donor was interested in getting in touch with her. It would be very exciting to learn more about other people involved in this kidney donation chain.

tired of being tired

2011-03-10T07:51:00.002-05:00

Sorry for not keeping up with the blog posts, but the reality is that there isn't a whole lot new going on around here. But, for those of you who are keeping up with our progress through these posts, I suppose I should be a little more diligent about reporting what is going on, even if it's "not much".

Jeanne and I continue to heal - but I have to admit that for me, at least, it is taking longer than I would like. On Monday and Tuesday, it really seemed like my energy level was starting to come back, but then yesterday I felt very wiped out much of the day. I seem to be finding myself often in a spot where I feel too good to do nothing, but not good enough to do anything - if that makes any sense.

Jeanne's followup visit on Tuesday went very well. They've told her she can already back down to one visit per week, which is great. A lot of that is because this is her second transplant, and she has already established a history of being a good patient - which means, most importantly, that she can be counted on to take all of the necessary medications. I find it such a shame to hear stories of patients who get a kidney transplant and then don't follow through with taking all of the necessary medications to keep that kidney healthy for as long as possible.

I rescheduled my followup with Dr. Del Pizzo from today to tomorrow, as they were predicting some snow/sleet/ice overnight and I was worried that I might not be able to get out of here this morning. Of course, none of that bad weather came - it's been all rain. So, now I need to hope that the amount of rain over the next 24 hours isn't so much that it makes getting back down to NYC a real hassle tomorrow.

the grass is getting greener despite having to deal with the septic tank

2011-03-06T19:59:00.003-05:00

Well, Jeanne and I continue to heal up. I've been gradually decreasing my pain medication. At first I was stretching out the time between doses, then starting taking half pills, then switched from Percoset onto Tylenol. My last Percoset was on Friday and I've only taken four Tylenol all day long. And, I would have to say that I now mostly feel fine. I only occasionally get that "someone just punched my in the stomach" feeling now.

My energy level is up as well. I haven't yet made it through the day without a nap, but at least we are to the point where I can tell you how many I took today (two short ones). I made a couple of short driving trips for the first time today as well. And, this afternoon, Mom and Dad headed back home, so tonight is the first evening back on our own for Jeanne and I.

One thing I've learned about recovering from surgery: life is going to go on and not stop and wait for you to heal. As I mentioned a couple of posts ago, Brian managed to get strep throat. Thankfully, the antibiotics got him going again quickly and he was back in school on Friday (probably could have gone Thursday as well). Then, yesterday morning, what at first seemed to just be a partially clogged toilet soon turned into a overfull septic tank due to the leach fields being saturated from all of the recent snow melt. We were able to get the tank pumped, but are still getting some runback from the fields - and all of today's rain certainly is not helping. It's always something!

I'm going to try putting in some half days of work from home this week. I think I'm ready to handle that.

And, then Thursday is my followup visit with Dr. Del Pizzo (my surgeon) and the transplant clinic.

Thanks to all for the many cards, prayers, dinners, carpools, kind words, and other help that so many of you have provided us over the past 10 days. Jeanne and I certainly could not have done this without all of you!

*** 100 bonus points if you can name the author who inspired the title of the post and his/her relation to content of my blog.

a look back at surgery day

2011-03-02T10:27:00.003-05:00

Well, it is now Wednesday - my third full day home and 5 days after my surgery. I'm still taking the Percoset for pain medication, but I am gradually stretching out the numbers of hours between doses. The biggest issue is that I still feel exhausted most of the time. But, despite being exhausted, I can't seem to get more than 2-3 hours of sleep at one shot.

Since not much else is going on today, I am going to try to take today to write up a post detailing everything I can recall about surgery day. Of course, I remember nothing about the actual surgery itself, and some of the time spent in the recovery room is a bit of a fog, but everything else I experienced that day will forever be part of one of the most special days of my life, so I better write it down somewhere before I forget it!

The last I posted on surgery day, I was about to check out of my hotel room. As planned, I headed over to 2 North to see Jeanne. When I left Jeanne the evening before, she was still in the recovery room, but plans were in place to soon move her into room 222. So, since I knew where she was going to be and I only had a few minutes to visit, I headed directly for room 222. Three steps into the room, though, and it was clear to me that the person in the bed was not my wife, or anybody's wife for that matter, as the person in the bed was decidedly male (a NYC firefighter, we learned later). A quick stop at the nurses station and I learned that she was placed into room 219 instead.

I found Jeanne awake and sitting in her chair watching television. It was good to see that she had been up and around a bit already - getting mobile as quickly as possible is the best way to start the healing process after surgery. I only was able to stay about 10 minutes or so, so we talked a little and then I gave her a goodbye kiss and was on my way over to the same day surgery area on the third floor.

This first stop of the day was very familiar, as it was pretty much the same process Jeanne had gone through just one day prior. David is the first guy you meet - he is responsible for collecting up your personal belongings for you, handing you the fashionable hospital garments you need to change into and getting you started with all of the final preparations before the surgery. As soon as I was done changing, Mary and Angel, the same two nurses who had worked with Jeanne the morning before, grabbed me and took me to a room for the final preparations. It was very comforting to have them take me through the process. They were very interested to hear how Jeanne was doing and I was happy to tell them that all indications were that this was going to be a successful kidney transplant and she was already on the road to recovery.

Once I had all of my vitals taken and the necessary paperwork completed, I was shuttled off to a waiting area to wait for the surgeon to arrive. By this point, Susie had joined me so she was able to keep me company during the wait. We shared the waiting room with a couple who had brought their little boy, probably no more than 5 years old, in for surgery (later Susie learned it was to remove a growth near the brain). It's really sad to see these kids so young have to deal with such issues.

After 45 minutes or so, Dr. Del Pizzo came in and we confirmed that he was removing my left kidney and then he marked my left side with a marker. After re-signing some paperwork that I had completed the previous week, he asked if I had any questions. My only question was "Do I get a picture of my kidney?" Unfortunately, he seems to be reluctant to provide me with any pictures, even though he admitted that pictures will be taken. I'll have to ask again during my followup visit in a couple of weeks. I can't imagine what his concern would be.

Soon after Dr. Del Pizzo left us alone again, an OR nurse came to take me away. What was unexpected to me, though, is that we passed all of the way through the holding area that Jeanne had been in the day before and I walked myself all the way to the operating room and climbed up onto the table. Somehow, I had figured I would be all drugged up before I ever saw the inside of the operation room. When I arrived, there were about 8 other doctors and nurses already there waiting for me. Immediately, they set to work sticking me with IVs, strapping me down to the table, stripping off my pants and asking me various questions. It all went by very quickly. The last thing I remember was them telling me to breath in this "Oxygen". I recall taking about three breaths in and that's the last I remember - something tells me there was something more than oxygen in there :-)

Of course, I don't recall anything for the next few hours, but I am told that Dr. Del Pizzo came out about 10:30am to tell Susie that the surgery was successful. Then, I was apparently being held somewhere while they waited for a spot to be made available in the recovery room for me to be cared for. When I first came to, I think it was around 11:30 or so. I do remember Mom, Dad and Susie all visiting me in the first few minutes as I came out of my sleep.

Once I became aware enough to notice any pain or discomfort, I was surprised to find that the pain in the area that the surgery was performed was pretty minimal. In fact, at first, it was only #3 on the list of discomforts I was experiencing. The most discomfort I was having was a huge knot I had in the middle of my back. I'm guessing that in order to perform the surgery, the doctors likely had my body twisted into some uncomfortable position on the stretcher, and my back was not happy about it by the time I woke up. #2 on my list was my eye. It felt like when a piece of sand flies into your eye at the beach - all watery and very irritated. Nobody seems to know what happened, but it did earn me a visit from an opthamologist right there in the recovery room. She diagnosed me with a scratched cornea and ordered me some eyedrops to help provide some relief. Neither one of these discomforts lasted very long. And, with help from the Percoset, even the pain from the surgery site was (and continues to be) very minimal. Most of that pain comes when I have to move myself around - either from activities like getting in or out of bed, or when coughing or burping jiggles up the abdominal area.

Pretty quickly after I was awake, I was cleared for removal from the recovery area and transfer to a hospital bed, as soon as a room was made available for me. At first, talk was that I would be going to the 15th floor. But, it seems that there were having trouble finding an available room. In fact the whole hospital seemed to be pretty full - a little surprising since I thought that generally they tried to get folks out before the weekend started. So, in the recovery area I remained.

Not that I minded much. Steve, my nurse, was giving me excellent care - helping to make my back as comfortable as possible, and giving me juice and pain medications as needed. Brenda, who was Jeanne's nurse from the day before, also was stopping by from time to time to check on me. And, various other doctors were stopping by from time to time to check on me as well. So, I was getting all of the attention I needed.

At some point while I was in the recovery area, I learned that my recipient was a "she", and not a "he" as I had been expecting from my last conversations with Marian. I also inferred that she must be roughly the same age as me, because some of the people who I was meeting with were getting confused and thinking that I was giving my kidney directly to my wife instead of us being involved in a kidney donor chain. All of the indications from the medical personnel were that the kidney transplant was a success and my former kidney was already working well in her body.

Finally, around 5PM or so, they found a room for me. And much to everyone's surprise, it ended up being the room right next door to Jeanne! This was highly unusual as the section that Jeanne was in is normally reserved just for transplant patients. But, given the shortage of rooms, this turned out to be the best available place for me, I suppose - unless someone was pulling some strings for us behind the scenes. So, when they wheeled me to my room, rather than leaving me in the hallway while they took care of the necessary paperwork, they pushed me into Jeanne's room so we could chat and she could see for herself how I was doing.

Once in my room, I found the hospital bed much more comfortable than the stretcher and that brought quick relief to my back. Marian stopped by not much later on her way out of the door to say hi. I told her everything went well and thanked her and the whole transplant team for making this all possible for us. My liquid dinner came about 8 and then I got up around 10 or 11 for a short walk and that was about it for surgery day.

strep throat

2011-03-01T16:40:00.004-05:00

Well, we took Brian in to the doctor's today and learned he has strep throat. One of the things that must be done to a recently transplanted kidney patient is that their immune system must be extra suppressed to prevent the kidney from being rejected. That makes Jeanne in her current condition especially susceptible to catching things from other people. So, we'll be keeping Brian and Jeanne pretty much separate until Brian gets himself feeling better. And, we'll be taking extra care to wipe things down with alcohol wipes whenever Brian is done with them. Hopefully, nobody else catches this from Brian either.

The trip to the doctor's office pretty much wiped me out today. All I really did was sit in the car on the way to the doctor's office, walk in and out of the doctor's office, walk and and out of the pharmacy and then sit in the car some more on the way home. But, that pretty much did me in for the day. It is amazing to realize how low my energy level really is. It's kind of frustrating, too, because when I just lay around, I feel good and want to get up and do something, but then when I get up and start doing something, I pretty quickly run out of energy and just feel like lying around.

I received my followup phone call from the hospital today. They asked how Jeanne and I were doing and I said we were both doing quite well. They mentioned that the woman who received my kidney had been released from the hospital and that things were going well for her also.

Jeanne heads back down to NYC tomorrow morning for an 8AM appointment. They'll draw some blood, have it tested, and then making any necessary medication adjustments based on the results. This will be the first of quite a few such visits she will be needing to make over the next several weeks.

Jeanne arrives home

2011-02-28T20:09:00.002-05:00

It's now a little after 8PM Monday night. Jeanne arrived home with Dad about three hours ago. It was great to get her back home here so we could all be together. Of course, she needs to be back down in NYC for an 8am appointment Wednesday morning and will be heading back down there a lot over the next month or so until they feel confident that the kidney is not being rejected by her body.

Unfortunately, Jeanne wasn't home five full minutes when the phone rang. It was Maryanne, who was helping out with after-school taxi service for Brian and Jason. Turns out Brian was not feeling well and she was bringing him home early from CCD. It appears that Brian has a bit of a fever - which means we are going to have to try to keep him and Jeanne apart as much as we can for the next few days.

Personally, I felt pretty good most of the day, but I do need frequent naps. The soreness seems to come and go throughout the day. It's pretty much exactly what the medical staff said to expect. I'm finding now that it nears the end of the day, I am getting more sore and more tired. I'll probably turn in for the night soon.

home again

2011-02-27T15:02:00.002-05:00

It's now Sunday 3PM and I am back home! My recovery is going great and Jeanne is getting better too. I'm still a little sore and and even more tired after sitting in the car for a couple of hours, but I am glad to be home here when I can rest a lot easier. It will be even better when Jeanne joins me here, hopefully tomorrow night.

More details later - now off to rest.

All is well

2011-02-26T09:54:00.003-05:00

Its now about 10am Saturday morning. I just wanted to make a quick post to let everyone know that all is well with me. My surgery went great and I hear that my kidney is working just fine in the recipient. Turns out that the recepient of the kidney was female, and not male as Marian had indicated earlier. I guess that means that the final crossmatch tests for those guys must not have gone well.

I'm up and walking now - a little slower than normal, but I'm able to get around on my own anyway. I must say I was expecting a lot more pain than this. Sure, I getting help from my pain meds, but even so, I was expecting to be feeling this a lot more than I am. Mostly, it only hurts when I move around, but even then, not all that much.

One nice surprise was that somehow, I ended up landing in the transplant section (usually reserved for recipients) in the room right next to Jeanne! Apparently, the hospital is quite full and they were having lots of trouble finding beds for the folks coming out of surgery, so somehow I got shuffled here. It's been great to be able to walk next door and see her. Otherwise, I may not have gotten a chance to see her until tomorrow.

I'll post later with more complete details of my whole experience, when sitting up is a liitle more comfortable and when I don't have an IV stuck in the back of the hand I am trying to type with.

Best I know, the plans are still for me to come home tomorrow and Jeanne to come home Monday.

My turn

2011-02-25T04:52:00.004-05:00

It's now about 5am Friday morning. I'm up and showered here at the hotel room and my stomach is screaming at me for something to eat. Sorry, not today! I got some sleep last night, but it sure wasn't a good night's sleep. I guess I can do my sleeping later this morning.

Now, I just need to pack up, check out, head over to Jeanne's hospital room for a quick visit and then report to Same Day Surgery at 5:45am. Obviously, I'm not going to be able to do much blogging today. Hopefully, some of you who are receiving the news can add some comments to let the rest of the world know how things are going.

6:30PM update

2011-02-24T18:23:00.002-05:00

Its now about 6:30PM Thursday evening. I'm checked in to a very nice room in the Helmsley Medical Tower just adjacent to the hospital where I'll be crashing for the night. While I type this, I am enjoying my liquid "dinner" of Tropical Carrot Juice drink to be followed by a Vitamin Water chaser.

I last saw Jeanne about an hour ago now and she continues to recover well and is more alert as the day goes on. She should be heading out of recovery within the next half hour and I'll be heading over to see her in her room in just a bit. She does not appear to be in much pain and her biggest issue seems to be a very dry throat at the moment.

Rick did stop by and we visited Jeanne together for a little bit. He had a busy day full of meetings around Manhattan - so busy he didn't have time for lunch. So, as he was standing around the recovery room surrounded by all of the tubes and machines and medical staff, he became a little faint. He is definitely my brother! So, we headed down to the hospital cafeteria together so he could get something to eat before he headed home.

Some people have asked me today if I know who it is that will be receiving my kidney. At this point I do not. I do know that as of last week, there were two "gentlemen" (as Marian put it) who were being tested for compatibility. I assume it is one of those two, and if so, the transplant will be performed right here at New York Presbyterian Cornell soon after it gets removed from me. I believe that after all of the surgeries are over, we may find out more details of all of the folks involved in the chain, but I believe it is up to each individual to decide if they wish to remain anonymous or not. I personally think it would be really cool to meet some of the other people involved in this chain, but I know that may not be very practical given that at least some of the other people involved are on the West Coast. However, I also don't think I would have any problem if I never found out who any of the folks were. For me, this is really all about Jeanne anyway.

A successful transplant!

2011-02-24T15:04:00.003-05:00

It's now about 3PM Thursday afternoon. Jeanne got out of surgery about 11am. We talked to her surgeon about noon and he told us that everything went very well. The kidney is already pumping out about a liter an hour. Got to see Jeanne about 12:30 - she's still pretty drugged up but is in very good spirits. I can only hope I'm half as good a patient as she is! Then Susie and I went out to lunch while Dad headed back home (hopefully for a nap). Headed back to see Jeanne again about 2:30. I need to limit the amount of time I spend with her to give her time to recover - what she needs more than anything right now is rest. They expect she'll be moved from the recovery area to a hospital room about 8PM this evening.

Well, if it's 3PM, then its about time for me to start my own preparation for tomorrow. I have 5 ounces of some "juice" that is supposed to help clean me out for the surgery tomorrow. Only liquids for me from now until midnight! Now that Jeanne's surgery over, I'm getting very tired - that adrenalin rush that's been keeping me going since 2am is starting to fade!

Hoping to see Rick a little later this afternoon. He happens to be in the city today and we're planning to meet up.

The kidney arrives - surgery underway

2011-02-24T09:42:00.003-05:00

Its about 9:45am Thursday morning. The kidney arrived safely overnight from California and Jeanne's surgery is now underway. Kissed her good luck about 7:45, went off to get some breakfast and we are now waiting in the comfortable lounge. We're expecting to hear from the doctor about 11:30 or noon after the surgery is over.

Keep the prayers coming!

Here we go!

2011-02-23T20:41:00.003-05:00

It's about 8:45pm Wednesday night. Jeanne should be on her way home from what we hope will be her last regular dialysis session for a long, long time. TJ is just getting home from his Boy Scout Meeting. Brian and Jason are lying in bed chatting with each other.

At the UCLA Medical Center, I imagine they have recently finished up a surgery a lot like the one I will be having on Friday - someone donating a kidney so that a loved one of their's could receive one from another.

The alarm clock is set for 3:15am. Mom and Dad are here. The bags are packed. The plans are set. The lists are all made out.

Let's do it!

clear skies ahead

2011-02-21T19:57:00.003-05:00

Normally, I'm not one who spends too much time checking out the weather forecast, but I've been keenly keeping my eye out on the weather for Wednesday into Thursday and am very relieved that all signs are for clear skies above New York City.

Why the concern? Well, Jeanne's new kidney is coming in from Los Angeles via an overnight flight, and were we to be getting another one of those winter blizzards, there is a chance that they would decide to keep the kidney in California and transplant it into a backup recipient at the UCLA Medical Center. However, it looks like the weather is going to cooperate and we won't have to worry about that happening.

Jeanne is off this evening for what should be her second to last dialysis session. I sure am looking forward to life after dialysis.

Getting ready

2011-02-20T20:38:00.002-05:00

Getting ready - that was what this weekend was about - and I think we are getting there. Jeanne and I spent a lot of time on Saturday figuring out all of the things that are going on for the week or so we'll be out of commission and planning what things we should do ahead of time, what to put off until later, what to ask someone to do for us and what we just won't do at all.

Looks like Dad has gotten the official duties of shuttling people in and out of NYC, including the 3:30am trip down on Thursday morning to get Jeanne to the hospital by 5:30am. If anyone has one of those cool-looking chauffeur's hats, please lend it to him for the week. I think he'd look sharp in it. Mom will be holding down the fort at home, for the most part. And then, we've got a number of other duties that we are asking (or soon will be asking) a variety of other people to help with - especially in the area of shuttling kids back and forth from their various activities.

I've decided to grab a hotel room for Thursday night at the Helmsley Medical Tower directly adjacent to the hospital. With the fasting and the bowel prep going on, along with not knowing exactly when and how much I'll be able to visit with Jeanne, it seemed like the smart thing to do as opposed to my original plan which was "I'll just crash on a couch or in a chair somewhere". I can tell you that the $50 reimbursement from the insurance company will barely put a dent in the hotel bill, though!

Today was spent getting the house ready - cleaning out the junk in the guest bedroom, cleaning the bathrooms, paying off some bills and getting as much household stuff taken care of as possible so we don't have to worry about those sorts of things as much in the coming weeks.

There are still a few more phone calls to make to get a few more things covered, but all in all, it's coming together. Thank you to the many, many people who have offered to help in so many ways! It really eases the mind to know that there are so many friends and family willing to step up and lend a hand. We couldn't do it without you!

pre-op testing day

2011-02-16T21:14:00.002-05:00

Today (that would be Wednesday for those of you reading on "tape delay" on Facebook), Jeanne and I headed down to New York Presbyterian for our pre-op testing. Traffic was pretty normal - which is to say there was a lot of it - so we arrived about 10:30 for our 10am appointments. We quickly parted ways as we each had our own sets of tests and interviews to take care of.

First up for me was to meet with Marian who went over some of the basics. I have been scheduled to arrive at the Same Day Surgery Department at 5:45 am on Friday the 25th. I can have food up until noon the day before, then only liquids until midnight and then nothing after midnight. I also have to do a bowel prep mid-afternoon. Marian assured me this was a mild one and nothing like the type of cleansing necessary for a colonoscopy. I sure hope that's true, because I'll be hanging around the hospital waiting for news on Jeanne at about that point in the day. To be safe, though, I'll make sure I have all of the nearby bathroom locations mapped out in advance! Marian also stated, as she had previously, that it is expected that I will be discharged on Sunday the 27th. In fact, one of the handouts I got was a sheet which details out what is expected of me after surgery and states that I will be discharged home by 10am.

Next stop was a visit to the surgeon. His staff kept me busy for a while with a pile of paperwork and then called me in for our discussion. I am going to be in very good hands (sorry about the pun). My surgeon was at John Hopkins in the late 90s when they first began performing laproscopic kidney removal and has probably performed this surgery as many times as anyone else on this planet. Even though I am not (not yet?) feeling very nervous about the surgery, I found this information reassuring nonetheless.

I found out that it is my left kidney that they will be removing. Apparently, that is the "default" kidney that gets removed because it is anatomically slightly easier to transplant the left one than the right one. If there were some reason to believe that one of my kidneys was "better' than the other, they would leave me that better one, but otherwise, they take the left one and leave the right one.

I also was presented with the opportunity to be part of a study. Apparently, there are two similar, but slightly different ways to perform the laproscopic surgery. The conventional way is to place three small holes in the abdomen for a camera and surgical instruments along with one incision for removal of the kidney. In the alternate method, a single incision is used for the camera, the instruments and the kidney removal. The study is intended to determine if the alternate method provides any benefits in terms of donor recovery. I very happily agreed to be part of the study. As a result, they will randomly choose which of the methods they will attempt to use on me. And, then I will have to answer some occasional surveys over the next five years or so.

After the visit with the surgeon, I was sent over to the pre-op testing area, and did a lot of waiting. First I waited for someone to show up at the desk to tell me to go over and sit in the main waiting area. After waiting there for a while, someone came and took me in to go over some paperwork. That took about five minutes and then that gentleman took me to yet a different waiting area. After probably another twenty minutes, a nurse came by and had me give a urine sample and then drew some blood. Then I had to wait for someone to give me an EKG. I was told I would be next. So, I waited in the room for someone to come. And waited. Then, another patient needed the room I was waiting in, so I got brought to yet another room to wait some more. Finally, after 30-40 minutes of waiting, I got fed up and went looking for someone. Of course I found the nurses chatting around the desk. They scolded me for leaving my assigned room, but it appeared my actions finally got someone to give me the EKG.

Next stop was radiology where I got my chest XRay - with almost no waiting! :-)

Now done with all of my testing, I went in search of Jeanne, and found her getting off one elevator while I was about to get on a different one. She was headed down to radiology for her own chest X-Ray. While she was waiting for the X-Ray (I must have just beaten the rush), she filled me in on her day. She had her own set of tests she had taken and her own doctors to talk to. Jeanne needs to show up for her surgery at about 5:30 am on Thursday the 24th. Since she doesn't get home from her (hopefully last and final) dialysis session until about 1am, and even at that time of day, its at least a 90 minute drive to the hospital, there won't be a lot of sleep to be had the night before the surgery.

So, now that we have times scheduled for the surgeries, I guess the next step is to work out all of the logistics (how we'll get to the hospital, where I'll stay the night before my surgery, who's watching the kids, how we'll get home, etc.) Thankfully, we've been offered a lot of help - we're going to need it!

pre-op testing is tomorrow

2011-02-15T20:06:00.002-05:00

Jeanne got a call today that we are to go in tomorrow for our pre-op testing. I don't know exactly what testing they are planning on doing, but I'm sure they'll be drawing some more blood - that will be the third time in a week for me, due to the fact that I just had my blood work done for my routine physical last Wednesday as well.

Then, Jeanne has to go back down on Friday for a mammogram and pap smear. Unfortunately, her previous one was 11 months ago - too long ago to be acceptable to the transplant team, and too recently for the insurance company to be willing to pay for one done locally.

Jeanne has been having a lot of trouble at dialysis lately. On Friday night, the nurses ran into some issues with the needles and had to send her home early and bring her back in on Saturday to finish her session. Then, something similar went wrong yesterday and so she is back in again this evening. When she goes in for her normally scheduled session tomorrow, that will be 5 visits in 6 days for her! This transplant can't some soon enough.

Happy National Donor Day

2011-02-14T21:49:00.003-05:00

We didn't hear anything from Marian or anyone else at the transplant center today. Well, at least I don't think so. You see, I got to talk to Jeanne for all of about 39 seconds this evening in the parking lot of the Dialysis center where we met to transfer kids after I picked up TJ from his basketball game. That gave us just enough time for a quick kiss and a short discussion to decide who was getting which vehicle and not much else. I assume she would have mentioned something if we had gotten any news. Not exactly a romantic Valentine's day for us this year. However, today is also National Donor Day. As such, I'd like to take the opportunity to thank all of the altruistic living kidney donors out there, including whomever kicked off the kidney chain we are part of, and Laura, author of the excellent blog All You Need Is One.

Friday visit to NY Presbyterian

2011-02-12T16:19:00.002-05:00

Yesterday morning, I was up and out the door by 6:30 am to head down to NY Presbyterian Hospital in Manhattan for the purpose of having my blood drawn so they can find a suitable recipient for my donated kidney. The visit itself was pretty uneventful, but it gave me the opportunity to learn more from Marian about the whole process.

This donation chain has been apparently been broken into 3 clusters and Jeanne and I are involved in the last of the three clusters. Each cluster is a series of closely spaced sets of kidney removal and kidney insertion surgeries. The first two clusters have already been completed and the last cluster will consist of just two transplants. On Wednesday, the 23rd, a kidney will be removed from a donor at the UCLA Medical Center. This person's partner has already received their kidney sometime earlier this month as part of cluster 2. That night, the kidney will be flown across the country to NYC (everyone pray for some good weather!) and then placed into Jeanne sometime on Thursday the 24th. On Friday, the 25th, I will go in for surgery to have one of my own kidneys removed (funny - it didn't strike me until just now to wonder which one). It will be placed into a soon-to-be-determined recipient, presumably sometime later that same day at the same hospital.

I asked Marian if we would ever find out more about everyone involved in the process. She said that it was likely we would. I think it would be exciting to meet some of the other people involved in this chain. I would most especially like to meet the person at the front of the process. That is the most special person of all. Most of the people involved in my process, like myself, are donated a kidney on the condition that someone they know and love is getting one in return. But, what is required to get one of these chains going is a so-called "altruistic donor" - that is, a person who donates their kidney to noone in particular, as was the case with Melissa back in 2008.

If you want to get a good feel for how these living donor transplant chains work, read this article that I happened across earlier today. It sounds like it was a very similar chain to the one we are part of, as it involves both the UCLA Medical Center and a person with PKD just like ours does.

I'll do my best to keep up with my blogging as we go through this process over the next few weeks. I know the last couple of years have been pretty slow for this blog - but 2010 in particular was a very tough year for us and I just couldn't bring myself to blog about all of the hospital visits, surgeries and dialysis sessions that Jeanne has had to endure. Those of you who read these entries on Facebook may want to directly check the blog at http://teamteddybear.blogspot.com if you want up-to-date info, as Facebook seems to take nearly a whole day to get around to importing these entries in.

I Hate Hamlet

2011-02-12T13:41:00.003-05:00

I'll try to post later when I have a moment about yesterday's quick blood work visit down to NYC, but in the meantime, here is a photo of TJ and the rest of the cast from Oakwood Friends School's performance yesterday evening of I Hate Hamlet.

we have a match!

2011-02-10T20:02:00.002-05:00

After 17 months of being on the transplant list, a little over a year in the National Kidney Registry and six months of dialysis, we finally have gotten the phone call we've been waiting for! They have managed to form a chain of living kidney donations that includes Jeanne and myself. If all goes according to plan, Jeanne will be receiving a kidney from someone in California on Thursday, Feb 25th (yes, just two weeks from today!) and the next day I'll be going in for surgery to have my kidney removed and donated to someone else.

Everything seems to be happening very quickly. Just last Friday, Jeanne got a phone call that there was a potential match for her. On Monday, she went down to the hospital to have some blood drawn, and then just this morning, we got the good news that the California kidney is a match for Jeanne. 3 out of 6 antigens match, which is quite good for a non-related donor.

Tomorrow, I'll be headed down to the hospital in New York City to have my own blood drawn so that they can perform the necessary tests to figure out who gets my kidney. I expect I'll learn a little more about what to expect as I go through this as well.

Apparantly, I'll only be in the hospital for a couple of days, and maybe about four days for Jeanne. For her first transplant, Jeanne was in the hospital for 10 days and Susie about a week, if I recall correctly. Things have changed a lot in the world of transplants over the last 13 years!

Thanks to everyone for their support and prayers! And keep them coming over the next few weeks!

Fall Soccer

2010-11-20T11:11:00.004-05:00

Congratulations to the Wolves - Jason and Brian's soccer team - for winning the end of year Town of Washington soccer tournament!

A big thank you to Jeff for coaching the team!

And thanks to Janelle for passsing along the team picture.

Team Photo 2010

2010-11-06T21:05:00.003-04:00

Here is Team Teddy Bear's official team photo for 2010:

Thanks to the support of friends, family, and even friends of family, Team Teddy Bear (New York + Chicago) managed to collect over $5800 this year!

Our biggest walk team ever and our most money collected ever!

Thank you all so much!

Walk Day 2010

2010-09-26T20:16:00.002-04:00

Yesterday was the 2010 Hudson Valley Walk for PKD and it couldn't have been a more perfect day. The weather was beautiful and the event went very well. It's always a very special day, but I truly think this year was the best one yet!

Jeanne wasn't yet up to walking anywhere near the 2 1/2 miles the walk goes, but she did feel good enough to come along to the event. She helped out by sitting at the chapter information table. Considering where she was just a couple of weeks ago, this was quite an achievement.

Missed were Kirsten and Luke of "Luke's team" who have moved off to Massachusetts in the past year. Their team was always on of the top fundraising teams and Kirsten was always very involved in the chapter planning activities. Luke is a wonderful boy who received a transplant due to ARPKD a couple of years ago.

Missed also was Bennie Newman, Diane and Chuck's father, who unfortunately passed away earlier this year due to complications from PKD.

Michelle and her Three Peas in a Pod team are always fantastic fundraisers, but this year they outdid themselves, raising over $20,000!!!!! As usual, Michelle ran a fantastic raffle and silent auction as well. Her dedication to raising funds to fight this disease and her willingness to reach out and provide support to other parents of children with ARPKD is admirable and inspirational.

It was great to talk with Wayne Grossman, just a few weeks removed from surgery to repair a brain aneurysm, which I have just recently learned is another complication that can come along with PKD. He appears to be doing fantastic.

TJ won a couple of awards - one for top youth fundraiser and the other for most creative youth web page. On top of that, he used his amateur radio skills to lead the walk and help provide communications in case anyone needed to make a call for help.

Traci Sinapi also won an award for her web page. Reading about her mom reminds me a lot of how Jeanne has handled living with this disease.

Brain and Jason got some recognition for their fundraising as well. The highlight of the day for them was getting their faces painted. Jason was a tiger and Brian was a puppy dog.

It was great having my sister Cindy, my nephew Brandon and my nieces Freya and Diana join us at the walk for the first time this year. Along with the veteran Team Teddy Bear walkers, it gave us our biggest team ever!

But, the highlight of the event for me was a surprise visit from my Uncle Marty, Aunt Lyn and cousin Caty who drove in nearly three hours from Woodstock, Connecticut to walk with us!

UCSF unveils model for implantable artificial kidney to replace dialysis

2010-09-18T16:40:00.002-04:00

With Jeanne now on dialysis, I found this article especially interesting. If they can actually get something like this to work some day, it would be a huge benefit to those in end-stage renal failure.

PKD Jewelry Fundraiser

2010-09-12T12:13:00.002-04:00

Check out Ruth's Lemonade and Kidney's blog to see some nice pendant necklaces which are available to purchase. More than half of the proceeds from the sale of the necklaces will be donated to the PKD Foundation.

2010 Walk letter

2010-08-29T14:11:00.001-04:00

Dear family and friends,

The 2010 Walk for PKD is coming up on Saturday, September 25th. This will be my fifth year leading our walk team, Team Teddy Bear, as we strive to raise funds and awareness in the fight against Polycystic Kidney Disease, otherwise known as PKD.

PKD is one of the most common life-threatening genetic diseases, affecting 600,000 Americans and 12.5 million people worldwide. In fact, it affects more people than Down syndrome, cystic fibrosis, muscular dystrophy, and sickle cell anemia combined! Still, few people know about it.

As most of you are probably aware, my wife, Jeanne, had a transplant 12 years ago due to Polycystic Kidney Disease. With PKD, cysts grow on a person’s kidneys, inhibiting the kidney’s ability to do its job to remove toxins from the body. Over time, the kidneys will function less effectively and for most people with PKD, their kidneys ultimately fail them. For Jeanne, this happened at the young age of 31. Thankfully, we were blessed that Jeanne’s Aunt Susie was willing and able to donate a kidney to her. The successful transplant was performed on May 26, 1998.

While the miracle of a kidney transplant is a wonderful treatment, it sadly is not a cure for kidney failure. A transplanted kidney can only last a limited amount of time in a foreign body. The exact number of years can very significantly, but the expected time a successful transplant will last is generally about 10-15 years. In Jeanne’s case, she started her progression toward kidney failure about a year ago, and was placed on the waiting list for a new transplanted kidney last September 30th. More recently, in order to help treat a hernia problem that caused a recurring intestinal blockage, she had both of her native diseased kidneys surgically removed. And, just in the past month, Jeanne’s kidney function has decreased to the point that she has now begun receiving dialysis treatments three times a week in order to remove the toxins that her kidney can no longer filter out for her. You can read more about our search for a new kidney for Jeanne at http://teamteddybear.blogspot.com/2009/11/open-letter.html.

As in past years, I am leading up a team of walkers to attempt to raise money for the PKD Foundation that can be used to help find new treatments for PKD that will help future generations of people who are afflicted with this disease. I have set a team goal of $4000 to raise money to fund vital patient education and research into a treatment and a cure.
If you wish to help in the fight against PKD, you can make a secure donation online at http://www.pkdcure.org/helpbobfightpkd or visit my team page at http://www.pkdcure.org/teamteddybear2010. Whatever you can give will make an impact - no donation is too small! I truly appreciate your support. If you wish to donate, but do not wish to do so online, you may write out a check to the PKD Foundation and mail it to me at:

Bob Sayah
53 Cooper Drive
Verbank, NY 12585

and I will forward it along to the foundation.

Thank you for helping in the quest to find a cure for PKD! And thanks to all of you who have supported my family and I with your prayers and offers of help over the past year!

Bob

3rd Annual Hudson Valley Chapter Fundraiser Renegades game

2010-05-29T17:53:00.008-04:00

The date for this year's Hudson Valley Chapter's fundraising event at the Hudson Valley Renegades is Sunday, August 1st. Gametime is 5:05PM. Cost is again $20, which gets you a ticket to the game, a Renegades cap, and a coupon for a hot dog and a soda. $8 of each ticket bought goes to the PKD Foundation. This year, the Renegades are offering to let us set up a information table if we can get 100 people to buy tickets in advance.

You can purchase tickets online at http://gadesgroups.com by entering the passcode hvpkd. For more details on the event and other ways to purchase tickets, see the flyer attached below (click on it to enlarge it). If you have any questions, you can contact me by email (bobsayah@optonline.net) or give me a call at 845-444-0186.

Hope to see you at the game.

opposites attract

2009-12-18T20:27:00.005-05:00

Well, I got my official letter in the mail regarding my compatability with Jeanne for a transplant. Here's the results:

Blood type:: AB
Antigen matching:: You and your recipient have a 0 out of 6 match
Crossmatch:: You and your recipient have a positive crossmatch

In summary, there is nobody on the planet who is a less suitable match with Jeanne for a kidney transplant than I am.

As I sit and reflect on this, though, I'm thinking this may actually be good news. I knew going in that I couldn't donate a kidney to Jeanne because of our blood type mismatch. If we were compatable with respect to antigens and crossmatch, then maybe the pair of people we would match up well with would also match up well with each other, and therefore the other pair would have no need to get involved in any sort of kidney swap.

In any case, the next step for me is to get back in touch with the NYP Weill-Cornell transplant team and start the process of getting myself into the Donor Swap program.

an open letter

2009-11-28T19:48:00.002-05:00

Dear friends, family, neighbors, kindhearted strangers,

My wife Jeanne was diagnosed with Autosominal Dominant Polycystic Kidney Disease in 1992, soon after we were married. Polycystic Kidney Disease (PKD) is a genetic disorder which affects an estimated 1 in 500 people worldwide. The presence of the PKD gene causes cysts to grow on the kidneys, which over time reduce the kidney’s ability to remove waste and toxins from the body. There is no cure, and currently no accepted treatments to slow the progression of the disease. Kidney failure occurs in approximately 50% of patients who have PKD.

Once kidney failure occurs, the only treatment options are dialysis and transplant. Dialysis is a process whereby the patient is hooked up to what is essentially an artificial kidney machine. Typically the process lasts for three hours and is performed three times a week, most often in a special dialysis center. Transplantation involves taking a kidney from another person, either deceased or living, and placing it into the patient’s body. For Jeanne, her kidney failure occurred fairly early in life – when she was only 31 years old. Jeanne was fortunate enough to receive a transplanted kidney, donated to her by her Aunt Susie in May of 1998.

Jeanne’s kidney transplant was a life-changing experience for her. It vastly improved her health and literally gave her new life, despite the many medications she needs to take to allow her body to accept the new kidney as her own. That’s the good news. The bad news is that a kidney transplant is not a cure for kidney disease – only a treatment. Transplanted kidneys can only last so long in a foreign body. In fact, the very drugs that are required to be taken to allow the body to prevent the new kidney from being rejected have an adverse affect on the kidney itself.

So, here we are 11 ½ years after the transplant, and the time has come where Jeanne’s “extra kidney” is no longer able to do its job very well. Jeanne’s creatinine levels (which are used to measure the effectiveness of the kidneys) are rising and it is time to face the reality of approaching kidney failure yet again. Jeanne has gone through the initial process of transplant evaluation and, as of September 30th, she has been placed on the waiting list for a deceased donor kidney. The amount of time one has to wait for a deceased donor kidney is highly variable, as it takes into account many factors, but the reality is that there are far more people in need of kidneys than there are kidneys available for those people. Given that Jeanne is blood type O, we are being told that the expected wait time to receive a deceased donor kidney is likely around seven years.

Living kidney donation is another option, as the large majority of us are able to live full healthy lives with only a single kidney, despite the fact that we have two in our bodies. Jeanne’s first kidney transplant was a living kidney donation from her Aunt Susie. In a living kidney donation, a person agrees to donate one of their two kidneys by having it surgically removed and transplanted into the recipient. In general, living kidney donations have much better success rates than deceased donor kidneys.

The three main requirements for being able to perform a living donor transplant are blood type compatibility, antigen matching and crossmatch compatibility. Blood type compatibility follows the same rules as for blood donation: A can donate to A or AB; B can donate to B or AB; O can donate to everyone; and everyone can donate to AB. Antigens are six markers on cells in our bodies that help our immune system identify foreign cells entering our bodies. The more of these antigens which match between the donor and recipient, the more likely there will be a good outcome of the transplant. And, finally, a blood test is done whereby the blood of the donor and recipient are mixed together to see if the recipients blood reacts against the donors blood. If it does, this is considered a positive crossmatch, and this condition decreases the likelihood of a successful transplant.

In the hopes that we can avoid the expected seven year wait, I have begun the process of attempting to see if I can become a living kidney donor. Unfortunately, since Jeanne is blood type O (the universal donor) and I am blood type AB (the universal receiver), I will not be able to donate a kidney directly to Jeanne. However, there is a small possibility of us being able to participate in a donor swap, whereby we could be matched up with an O-type donor and an AB-type recipient who are otherwise incompatible due to poor antigen matching or a positive crossmatch reaction. While the chances of us being successfully paired up in this manner are somewhat minimal, they are certainly better than if I try than if I do not.

Deciding to donate a kidney is a major life decision, so I could never ask someone directly if they would be willing to join me in my attempt to provide Jeanne a living donor kidney. It simply would not be appropriate in my mind to put someone on the spot like that. There is certainly pain involved, various emotional issues to sort through, potential financial impacts, and some small risks associated with the surgery itself. It is not a decision to make hastily, nor one to be made because you feel pressured to do so. However, given Jeanne’s health and the reality that even if a match is eventually found for my kidney, it could take quite some time before that happens, I feel it my duty to at least put some information out there which would enable someone who might be willing to step forward to do so.

If, after careful reflection, you do feel that you may wish to become a potential kidney donor, you may contact the Rogosin Institute Transplantation Center at (212) 517-3099 and inform them that the patient you are inquiring about is Jeanne Tobin. Jeanne’s clinical transplant coordinator is Warren Phillips. You may speak to him or to another member of the transplantation staff. They will be happy to answer any questions you have about kidney donation and will respect your privacy along the way as well. If you wish to do some research on your own, you may find the information at http://www.rogosin.org/treatment-transplantation.php to be helpful.

Thanks,

Bob Sayah

a soggy Halloween

2009-10-31T20:32:00.004-04:00

Happy Halloween, everybody! It was another fun night of trick-or-treating for the Sayah boys (all four of us :-)). Jason went as Mario from the Nintendo games. As usual, Jeanne did a great job of pulling together the costume.

Brian and I went as Elmer and Boris the Dragon from the book My Father's Dragon. Jeanne got off easy here, as these costumes were still sitting in the crawlspace from 8 or so years ago, when TJ and I went out in these costumes. I just had to make some new wings for the dragon this afternoon.

I don't think these books as very widely known, as noone could name who Brian and I were. But, if you have kids in early grammer school, I highly recommend you find these books for them. And if they really get into them they way all of my kids have, we've got some costumes you can borrow next year!

TJ wasn't going to go out trick-or-treating this year, but at the last minute he changed his mind and joined us. He pulled together a costume using a mask and some props from his school play last year, where he played the role of the Executioner.

Here's one more picture that was just too cute to not post.

After about forty-five minutes of trick-or-treating in the light rain, it started to fall more heavily, and we all started to get pretty soggy. My wings collapsed and I could feel my tail starting to get really heavy from all of the puddles it was getting dragged through. Brian's backpack (which was a cereal box covered with brown paper) got wet and then the shoulder straps fell off. So, we headed back home (without too much complaining) and spent the rest of the night greeting the trick-or-treaters coming to our door. Seems like the rain led to a lighter turnout than usual. Time to go turn off the lights and call it a night!

first visit to the Walkway over the Hudson

2009-10-25T19:49:00.009-04:00

Today, I got my first chance to visit the Walkway over the Hudson which opened up about a month ago. For those that don't know, the Walkway over the Hudson is a new state park where they converted a former railway bridge into a path across the Hudson River from Poughkeepsie to Highland. You can learn more about this wonderful new place from their website.

Jason, Brian and I went together to check out the walkway while Jeanne stayed home to get started on Halloween costumes and TJ was off at play practice. I had heard that there would be a free shuttle bus from the nearby train station, so I decided to go there rather than try to find parking at the site, as I was certain the place would be crowded on such a beautiful day. Turns out that was the right plan. The lot at the park was full and the guy across the street was charging $5 to park in his lot.

Jason and Brian enjoyed the bus ride over.

Once the bus dropped us off at the park, we had to walk down a short path to get to the bridge.

With the fall colors, the views were spectacular.

Here is Route 9 from a new perspective

Finally, out over the Hudson River!

Looking south at the Mid-Hudson bridge

At this point on the bridge, we ran into the Marist women's basketball team. One of the girls was nice enough to offer to take pictures of the three of us, so I get to upload a couple of pictures that have me in it for a change.

Well, since Brian and Jason were getting tired of walking, and we had to pick up TJ soon anyway, that's as far across as we got today. So, we turned around and headed back.

As we reached the end of the path, we saw the bus pulling away, so we had to hang out and wait for a while. Brian and Jason had fun passing the time.

But, then the bus finally showed up to bring us back to the train station.

We ended up being a little late to pick up TJ, but the three of us thought it was worth it. And since TJ got to go over the bridge earlier in the week with some classmates (and none of us), he couldn't complain too much. With November just around the corner, I imagine that's the only chance we'll get to visit this year. When spring comes, we'll have to plan a nice day of it and go all the way across - maybe even pack a picnic lunch to eat over on the other side.

TJ's Confirmation

2009-10-24T11:06:00.005-04:00

TJ received the sacrament of Confirmation last evening at our parish church of St. Martin de Porres. TJ chose to confirm under his baptismal name of Thomas in honor of Saint Thomas Aquinas, the patron saint of scholars. TJ received a little special attention from the bishop due to the fact that he decided to write his letter to the bishop in both English and Latin.

Here's a picture of TJ and his Nana, whom he chose to be his sponsor.

And here's a picture of the family with Bishop Lagonegro.

I'm very proud of the fine young man my son is growing into.

PKD publicity on CBS Early Show - tomorrow!

2009-10-18T12:26:00.003-04:00

Received the following email and thought I would pass it along on here in case this is able to reach someone not already on the mailing list. This is tomorrow! Sounds like a great chance for some more publicity for PKD. Hope they are able to draw a good crowd, but midtown-Manhattan at 7:15am on a weekday with three kids to get off to school just isn't realistic for us. If nothing else, though, set your VCRs and DVRs.

We have just officially booked the CBS Early Show for this coming Monday morning, October 19, 2009. In order to maximize our media attention, we need 20 people to come down to CBS Plaza and fill our shot - we have guaranteed air time. Wear your teal Walk for PKD t-shirt or we'll provide one. We also encourage you to make signs that include the website…www.pkdcure.org. Please e-mail us as soon as possible if you are interested in attending! tristatewalk@pkdcure.org Bring family, friends, colleagues to help guarantee us as much air time as possible! Or pass this email on to anyone else who may be interested. Please let us know if you have any questions. Hope to see you Monday morning! Meeting details are as follows: Arrive by: 7:15 a.m and leave by 8:50. Report to 59th St and 5th Ave, the southeast corner of Central Park. It's in the same building as FAO Schwartz. The camera people and crews, and barricades are out early so you can't miss it. Everyone should dress warm but the Apple Store will allow us to stay in their store for warmth. If anyone would like a tour of the inside of the studios at 9 a.m, CBS will probably do that for us

pictures from walk day

2009-10-12T08:29:00.005-04:00

Finally got some pictures from the walk. Thanks, Dad!

Here's Sam, this year's walk coordinator, along with his bodyguards. Positions of power such as his require extra attention to security.

Here's Jeanne taking care of the Hudson Valley Chapter information table.

Jason hanging with a stormtrooper.

Brian and Pop-Pop waiting for their chance to say hi to the stormtrooper. There's Kenny the Kidney in the background.

A picture from the walk route. Notice how everyone is in front of us, as usual.

One of my favorite touches is the signs they put up along the walk route. Here's one congratulating TJ for his fundraising efforts the previous year.

Back at the pavilion, it's time for some eating and socializing!

Brian, don't fill up on soda!

TJ once again received the award for second place youth fundraiser. He's not looking as youthful as he used to, though! In the foreground, Luke raises up his first place trophy.

Thanks again to everyone who helped make this another successful year for Team Teddy Bear and the entire Hudson Valley Walk fo PKD!

Walk for PKD 2009

2009-09-27T20:35:00.002-04:00

Yesterday was the 2009 Hudson Valley Walk for PKD. As usual, the day was hectic, fun, emotional and exhilirating all at the same time! The alarm went off at 5:45 and thankfully, we had all but Brian up out of bed on their own before 6:30. A quick breakfast and we were on the road a little after 7:15, getting us to Bedford Hills right on schedule at 8:15.

Jeanne and I started out by setting up the Hudson Valley Chapter information table while TJ pitched in and help muscle some tables to their proper spots. A small football that our walk team received in our prize basket served as more than enough entertainment for Brian and Jason, who were very happy to have Luke join in the fun with them.

After a while working the chapter table, Heidi asked me to work at the registration table, helping people fill out forms to submit their donations at the walk and pointing people to the proper places to check in. I helped here last year, and think I'm getting quite adept at recognizing the "I'm not sure where the heck I'm supposed to go" look on people's faces. I like this job, as it is a good chance to meet folks and hear some of their stories about why the walk. Once person was down from Rhode Island and was wearing a T-shirt from a PKD Comedy and Music festival. I asked her about it and learned that it taken place every August for the last three years. This sounds like it might be a fun weekend trip for next summer. I'll have to google it up and find out exactly when and where it takes place.

A little after 10, the opening ceremonies were run by Sam and then the walk was off. TJ and his ham radio were at the front of the walk. Jeanne had a bit of a headache and wasn't feeling up to walking, so she decided to stay behind at the pavilion. Since I was helping with some last minute registrations, I got a late start and had to jog the first 1/4 mile or so to catch up with the rest of the family. For a while, we were keeping pace with the rest of the group, but then Brian and Jason started to tire, and we eventually ended up the same place we do every year - the back of the pack.

The good news is that by walking at the back of the pack, I was able to meet Bill Brazell (aka Kenny the Kidney), who is a member of the PKD Foundation's Board of Trustees, and had the pleasure of chatting with him for a while as we walked the route. At one point, when I began to tell the story of how PKD is affecting our family, Bill suddenly interrupted: "oh - are you the Bob from Team Teddy Bear?" Apparantly, he had just been reading through this blog the other night and recognized my story. Bill's a wonderful guy, so if you ever see a seven foot tall kidney walking down the street, don't be afraid to walk up and introduce yourself.

Once we got back, it was time for the post-walk festivities. TJ once again received the second place youth fundraiser award for raising over $1000! Great job, TJ! And, after four years of trying, I finally won some of the famous Grossman family maple syrup in the raffle! Can't wait for our next pancake breakfast.

After the walk, it was back to our house for a little post-walk eating and relaxation. Since Friday was Mom's birthday, Jeanne had ordered a cake to celebrate the occasion - turned out the cake was her 5th birtday cake in as many days. Better spend some extra time on that treadmill this week, Mom.

Pictures? Well, those will need to come later. You see, I have this bad habit of leaving the camera behind. I think it's a subconscious response to my other bad habit of dropping and breaking cameras. But, Dad has some pictures and I'll post some of them as soon as they get passed along.

Thanks again to all of those who have supported us this year. I've lost track of our official total at this point, but I know it is now over $4000!

two more days until the walk

2009-09-24T06:01:00.002-04:00

Two more days until our chapter's Walk for PKD. Our walk has now raised over $44,000. I believe we are poised to actually beat last year's total - which I find amazing considering the hit the economy has taken over the last 12 months. There seem to be quite a number of new walkers and walk teams this year who are getting involved and helping to raise more funds, and hopefully more awareness as well. I'm looking forward to this walk being the best one yet.

Our team managed to take the prize for most walkers with $50 or more raised - and our grand total is now $3645. I couldn't ask for a better team, and, even after four years of doing this, am overwhelmed by the amount of support I receive from friends and family in our fundraising efforts! Thank you all!

Here's the latest update from Heidi:

Hello Team Captains!

The Walk for PKD is almost here! We are thrilled to have so many walk teams participating in the Hudson Valley Walk this year- and some amazing fundraisers. We have already raised enough money to fund a year of a research fellowship- we really are doing something to help end PKD!

Congratulations to our most recent "Team Tuesday" prizewinners... Team Teddy Bear will receive a picnic fun pack on walk day to celebrate the fact that all 13 of their walkers have already raised $50 or more. Great job! In addition, Benny's Brigade, Dream Team, Hooked on Hope, Luke's Team, Team Teddy Bear, and 3 Peas in a Pod will have snack basket waiting for them at the walk in celebration of the fact that they had all raised over $2000 by last night.

We are proud of all our walkers and all our teams- you are playing a huge role in our quest to find a treatment or cure for PKD.

I look forward to seeing you on Saturday. After registration I'll be at the Hudson Valley Chapter Info table, so feel free to come on by and say hello- and find out what our plans are for the rest of the year!

Oh, and don't forget, we will be holding a Chinese style raffle and a silent auction as well. We have lots of great raffle prizes and our silent auction items include a 37" LCD TV, a Blu-Ray DVD player, a Nikon digital camera, and a Play Station 3 all donated by Best Buy... plus even more!

See you at the walk!

one more week until the walk

2009-09-19T06:51:00.003-04:00

The 2009 Walk for PKD is a week from today. Thanks to our friends and family (and even friends of family), Team Teddy Bear has raised nearly $3500! The overall total for the Hudson Valley Walk is over $39,000, which I think is a little ahead of the usual pre-walk total. It appears that there are a number of new teams signed up which might mean we are headed for a record turnout. It's very encouraging to see such continued support despite everything that the economy has gone through over the past year.

News from Heidi on Team Tuesday:

" Congratulations Teams!

Sixth Street, 3 Peas in a Pod, The Cure Crusaders, Team Teddy Bear, Hooked on Hope, Benny's Brigade, and Luke's Team will all have team tables reserved at the walk site. Feel free to bring things to mark your spot and make it a fun place for your team to congregate! Other teams will still have an opportunity to have a table to sit at- but the remaining tables are open to anyone.

I am happy to say that we had a 3 way tie for teams who had the most walkers raising $50 or more- Team Teddy Bear, Hooked on Hope, and Luke's Team were all tied with 8 team members raising $50 or more. Great problem to have, but I only have one "Picnic Fun Pack"- so we'll extend that challenge to next Tuesday and see if one team pulls ahead and takes the lead!

Have a great week- and thanks for all your efforts in recruiting walkers and fundraising. You are taking steps to help cure PKD and 12.5 million people appreciate it!"

Last minute donations are always welcome. Just head to http://www.pkdcure.org/helpbobfightpkd to make a donation.

Team Table Tuesday

2009-09-12T07:03:00.002-04:00

Here's the next Team Tuesday challenge from Heidi:

Congratulations to Janet Ferrara and the Cure Crusaders - winners of our Sept. 8th drawing for a Walk for PKD gift bag! As of 5pm on Tuesday, the Cure Crusaders had registered 10 walkers and raised a total of $180.

Now its time to gear up for the next challenge- Team Table Tuesday!

Any team that registers 10 or more walkers online by 5pm Tuesday, Sept. 15th will have a Team Table reserved for them at the Walk start/finish line! This guarantees that you'll have a place to gather before the walk and to sit, relax, and enjoy lunch after the walk. You are also welcome to decorate your table and make it festive if you like! But wait, there's more! It's great to get people to the walk, but remember this is also a fundraiser. The team with the most walkers who have raised $50 or more by 5pm Tuesday will also have a special suprise waiting for them on their table on walk day. It's EASY to raise $50... just ask 2 relatives for $25 or 5 friends for $10. Even kids can do it! If you hate asking others... you can also always donate yourself. :)

Good luck with your recruiting and fundraising this week!

Please pass this message along to your team members so they can help you.

Heidi Cambareri
Volunteer Chapter Coordinator
PKD Foundation - Hudson Valley Chapter
www.pkdcure.org

THE HUDSON VALLEY WALK FOR PKD IS ON SEPTEMBER 26TH! REGISTER OR MAKE A DONATION TODAY!

Facebook Vote for a Cause

2009-09-11T19:13:00.004-04:00

In addition to the Walk for PKD coming up (in some places the walk is this weekend), here's another way to support the PKD Foundation through Facebook. Intel is giving one non-profit organization a chance to "win up to $50,000 in co-branded advertising". Could be just the kind of exposure the PKD Foundation needs to get this disease on everyone's radar screens. The PKD Foundation is currently one of the 16 finalists and could use every vote it can get. If you are on Facebook and want to help out, it's as simple as:

1) Go to http://apps.facebook.com/voteforacause/

2) Click on the PKD Foundation button

3) Click on "Record your Vote!"

4) Repeat every day until the PKD Foundation emerges as the winner!

first day of kindergarten

2009-09-10T20:04:00.002-04:00

Today was the first full day of kindergarten for Jason and Brian. Here's some pictures just before getting on the bus for the first time!

Jason and Brian getting ready to go

Jason waiting for the bus

Brian waiting for the bus

The bus!!!!

Jason on the bus.

Brian on the bus

Some first day trends we hope don't continue:

Brian was escorted inside at recess by the principal (ok, so it was just to bring him to the nurse's office after a fall - or at least that is Brian's story and he's sticking to it)
Jeanne, free at last to go shopping without the little guys, went on a spending spree at the local stores (ok, so it was mostly to buy TJ clothes for school)

First day trend we hope DOES continue:

The boys fell asleep very quickly tonite!

Team Tuesday #1

2009-09-06T22:59:00.002-04:00

Heidi, our chapter coordinator is running "Team Tuesdays" in conjunction with this year's PKD Walk. The first one is this coming Tuesday, the 8th. Here's the details:

It is time for Team Tuesdays! For the next 3 Tuesdays, your team can take part in some special challenges- just for walk teams! This Tuesday, September 8th, is Full Team Tuesday. All teams are encouraged to register at least 4 walkers on line by Sept. 8th. If you do, you will be entered into a drawing to win a Walk for PKD gift bag including things like a duffel bag, bracelets, water bottles, and a bunch of other fun treats. If you have a full walk team, great work! If you don't have 4 people on your team yet, don't miss your chance to win... now is the time to ask some friends or family members to join you.

Team Teddy Bear currently has five registered team members (six counting Alexis) - and hopefully we'll have several more registering soon!

Now that the website is functional again, I can report our official fundraising total is $1839.55. Thanks to everyone for supporting us!

Thanks

2009-09-04T20:34:00.002-04:00

Thank you to everyone who has supported Team Teddy Bear so far this year. The walk web site seems to be having some issues this evening, so I'm going by memory here, but my unofficial team total has us a little over $1600. I was hoping to catch up on thank you notes tonite, but with the site having issues, I guess I'll have to do that another time.

Thanks to Brian and his team at Dutchess Building Specialists for supporting our cause again this year. If you live in Dutchess County and are considering any remodeling in your home, I highly recommend giving Brian a call. He and his team are true professionals who will bend over backwards to minimize the disrpution involved in any home remodeling project.

Team Teddy Bear goes cheese-head

2009-09-02T21:58:00.002-04:00

My wonderful sister-in-law Alexis will be virtually walking with us again this year. Since she'll be out of town that weekend, she'll actually be walking in Green Bay this year instead of Chicago. Hopefully, the post-walk lunch includes beer and brats!

Check out her walk page at: http://www.pkdcure.org/alexis.t

Thanks, Alexis!

initial tally for 2009

2009-08-27T20:44:00.004-04:00

Finally got some time this evening to catch up on walk fundraising activities. Thanks to everyone who has donated to Team Teddy Bear's total of $1404 so far in 2009! The current tally for the Hudson Valley Walk is nearly $16,000. The walk takes place one month from yesterday.

200,000 miles!

2009-08-23T19:18:00.002-04:00

Today, on the way home from the Renegades game, our Toyota Sienna minivan passed 200,000 miles. 11 years and still going strong!

emails sent

2009-08-22T21:28:00.002-04:00

I finally got a chance to send out some emails to friends and family asking them to support me and Team Teddy Bear in the 2009 Walk for PKD. I got off to a much earlier start last year - I remember TJ and I working together on this over July 4th weekend.

If you are visiting the blog and want to check out our progress, you can follow along at http://www.pkdcure.org/teamteddybear. My own page is http://www.pkdcure.org/helpbobfightpkd. And the Hudson Valley Walk page is at http://www.pkdcure.org/hudsonvalleywalk. And, while you are there visiting, please consider donating to help fund essential PKD research.

a start

2009-08-16T07:35:00.002-04:00

Well, Team Teddy Bear's fundraising is officially kicked off. Every year, TJ saves up all of our nickel deposit cans and bottles and we use the money we get from that as part of our fundraising. Yesterday, we finally returned the large pile which was sitting in the corner of the garage. The tally was 191 bottles, which came to $9.55 cents.

Other than that, I am quite behind in my fundraising process this year. The people who run the walk changed the software which they use, so I lost the address book I had created last year and I need to enter a new one into the system before I cna start sending out any emails. So, I am now scrambling through various places trying to resurrect an email address book so I can contact folks.

2009 Walk coming soon!

2009-08-09T14:11:00.003-04:00

Well, obviously my attempt to get things moving on this blog again earlier this year proved to be a false start. But, hopefully, with the Walk for PKD coming up soon, I can use that as an opportunity to get myself back into the groove.

Yes, the 2009 Walk for PKD is already less than two months away. It will be held on Saturday, September 26th in Bedford Hills Memorial Park - the same location it has been held as long as we've been participating. This will be our family's fourth year particpating.

I've updated the blog here so that everything links to our new web pages for this year's walk. So, please take a moment to check out our team's web pages and consider making a donation to our team. Or, better yet, join us on team Teddy Bear either locally, or as Alexis did last year, in another walk closer to you.

upcoming Hudson Valley Chapter events

2009-05-13T07:23:00.002-04:00

Hudson Valley Chapter Meeting

Thursday, June 4, 2009
7:00 p.m.
Bedford Hills Community House
74 Main St, Bedford Hills, NY

Please join us for our next Chapter meeting. We are excited to have Chuck Newman from The Charles J. Newman Company as our guest speaker. Mr. Newman will be discussing "Insurance Issues for PKD Families" a topic that is very important for most of you.
There will be a brief Walk for PKD planning meeting following the presentation. Refreshments provided… New members are always welcome!Please contact Heidi Cambareri at 914-953-1163 or hudsonvalleychapter@pkdcure.org if you plan to attend.

Take Me Out to the Ballgame…

Join us at a Hudson Valley Renegades Game!

Sunday, July 26th at 5 p.m.
Tickets: $20/each, which includes a general admission ticket, baseball cap, hot dog, chips & a soda; AND $10 per ticket is donated to the PKD Foundation, Hudson Valley Chapter.

Tickets are subject to limited availability on a first come, first served basis. Purchase tickets online at: http://gadesgroups.com with the group password: hvpkd123.

For more information about the Renegades game, contact Bob Sayah at bobsayah@optonline.net or 845-444-0186.

new walk coordinator for 2009

2009-05-01T19:38:00.003-04:00

Well, this is old news now, but just because I wasn't blogging, doesn't mean that things weren't happening!

Sam Friedlander has stepped up and taken over the job of walk coordinator for 2009. Sam has been involved with the walk planning for several years and over the last few years has done an admirable job with organizing all of the food. This is quite a task as we receive food donations from a large number of different organizations - some of it needs to stay hot, some needs to stay cold and by it's nature the large majority of it needs to be handled at the last minute. In the three years that our family has done the walk, we've always been well fed. And since we're usually the last ones back, if there was a problem with the amount of food, we'd be the ones to know!

The next walk planning meeting is scheduled for next week. Here's the announcement.

A planning meeting for the 2009 Hudson Valley Walk for PKD will be held on May 6, 2009 at 7:00 p.m. We need your help! Please join us at the meeting to learn about volunteer opportunities for the Walk and to share your ideas. You are welcome to attend the planning meeting even if you are unable to volunteer for the Walk. Here are the details about the meeting:

Planning Meeting
2009 Hudson Valley Walk for PKD
Date: Wednesday, May 6, 2009
Time: 7:00 p.m.
Location: Bedford Hills Community House
74 Main Street
Bedford Hills, NY 10507

Click Here For Directions

For further information, please contact:

Sam Friedlander
Walk Coordinator
hudsonvalleywalk@pkdcure.org

time to wake up this blog

2009-04-28T20:58:00.002-04:00

Well, it's been quite a long time since I last posted. Probably, anyone who cared to read the blog, gave up on me a long time ago. But, I'm going to see if I can get my momentum back on this blogging anyway.

First order of business is to brag about a picture of TJ and Jason appearing on the front page of section B of Saturday's Poughkeepsie Journal. Here is an online version of the picture you can check out.

New Jersey Lighthouse Challenge

2008-10-26T21:10:00.006-04:00

Last weekeend, out family decided to take a weekend trip to participate in the New Jersey Lighthouse Challenge. The challenge is to visit 13 different locations in two days, collecting a button at each location and a special cars once you visited all 13. In order to save a bunch of driving on Saturday morning, we drove down Friday night and stayed in a hotel in Thorofare, NJ, about five minutes from the first lighthouse we planned to visit. I was afraid the weekend would feel too "rushed" as we hurried to visit all of the sites. But, it turned out that we were able to go at our own pace and still see all of the sites.

We woke up early Saturday morning, grabbed some breakfast at the hotel and were on the road right about 8am. The first lighthouse we visited was Tinicum Lighthouse, located on the Delaware River in Paulsboro, NJ, just across the river from the Philadelphia Airport. This lighthouse was located right smack in the middle of the local community recreation park. The stairs on this one were very open. Brian didn't like being able to see down that well, so I had to carry him back down the stairs.

Next step was Finn's Point Lighthouse, a little further down the river.

And then had our biggest drive between lighthouses - about an an half to East Point Lighthouse. The kids were getting a little antsy in the car for this trip. This lighthouse had a nice view out across Delaware Bay.

At this point, we were getting hungry, so we found McDonald's for lunch before heading on to the Cape May lighthouse. We had been here back in June as part of our summer vacation - in fact it is the place we learned of the challenge in the first place. Now that we were on the coast, we walked over to the beach for a few minutes to check out the sand and the ocean.

Next up was one of the two museums on the route - the Cape May County Historical Museum. Housed here was one of the lenses that used to reside in the Cape May Lighthouse. The bright light you see in the picture below was generated by just a 60 watt light bulb.

From there, we went on to Hereford Inlet Lighthouse in North Wildwood.

And then to the Absecon Lighthouse in Atlantic City. Brian and Jason had gotten pretty worn out from all the climbing we had done so far, so they fell asleep in the car on the way. We had to wait a bit for them to wake up before we went into this one. This lighthouse is the tallest in New Jersey and the third tallest in the country.

Since the next lighthouse was one of the ones hosting a night climb, we decided to break for dinner before going on. Unfortunately, it took us quite a long time to find a place to break for dinner. We finally settled on a Stewart's drive in which was fun, but by then it was starting to get a little cool. After dinner, we went on Tucker's Island Lighthouse. Because it was dark, we didn't get to see very much. However, the bottom of the lighthouse contained a hands-on museum which the kids enjoyed a lot. We stayed until they kicked us out at 8PM.

The next task was to find a hotel for the night. Not really being familiar with where we were, we decided to just head in the direction of the next lighthouse and see what we could find. Turned out finding a place to sleep was an additional challenge we hadn't planned on. Hotels were hard to find - at least along the route we were taking. We finally stumbled upon the Barnegat Inn. While I was checking in, someone called asking for a room - and was told that I had just taken the last one!

The next morning, I ran out to Dunkin Donuts to bring some breakfast back before we headed out for the day. We got out of the hotel about 8am again and found we had about a 1/2 hour drive to our first step of the day, which was Barnegat Light Historical Museum. This small museum housed another lighthouse lens.

Then, we were off to the Barnegat Lighthouse itself. Unfortunately, the winds had picked up quite a bit overnight, so they had closed the lighthouse, preventing anyone from climbing up.

Next stop was about an hour away - the Sea Girt Lighthouse in Sea Girt, NJ.

After our visit at the lighthouse and a short visit at the nearby beach, it was time to find something to eat. We found a nice local restaurant, got ourselves a table, and learned that even though it was about noontime, they were still serving breakfast. So, we all indulged in a second breakfast.

When we were done eating, we headed next to Twin Lights in Highlands, NJ. This was the consensus favorite lighthouse of the trip. This lighthouse was high up on the hillside and had two light towers instead of one. Of course, we had to climb both towers.

Last stop was Sandy Hook Lighthouse. Unlike most of the lighthouses, where you could climb up and down as you pleased, this lighthouse had guided tours - eight people at a time. So, there was a line to wait on to go up the lighthouse. Also, they had a height limit of 48 inches, so that meant that Brian and Jason would not be able to go up. So, Jeanne took Brian and Jason to a nearby beach while TJ and I waited the hour to go up the lighthouse. However, it turned out to be well worth the wait. By that time of the day, the sky was very clear, so we were able to get great views of JFK airport, Coney Island, the Verrazano Bridge and the Manhattan skyline.

From there it was on to dinner at the Marina Diner - where they served us a feast - and then about a two hour trip home. We were all plenty exhausted by the time we got home, but we all had a great time!

thank God I have "gold-plated" insurance

2008-10-15T22:51:00.004-04:00

Quote from John McCain in tonite's debate: "Now, 95 percent of the people in America will receive more money under my plan because they will receive not only their present benefits, which may be taxed, which will be taxed, but then you add $5,000 onto it, except for those people who have the gold-plated Cadillac insurance policies that have to do with cosmetic surgery and transplants and all of those kinds of things"

Ok, so depending on your definition of cosmetic surgery, I can see where that might be considered a "luxury item" in a health insurance plan. But lumping in transplants with that? Huh?

It's OK, John - you didn't lose my vote. I wasn't going to vote for you anyway....

Walk Day pictures

2008-10-15T22:24:00.002-04:00

There are now a bunch of pictures from the Hudson Valley walk posted off the Hudson Valley Walk Page. You can check them out here.

PKD Foundation Webinar next Tuesday

2008-10-07T20:06:00.002-04:00

Join Us for a Free Webinar with PKD Expert Dr. Ronald Perrone!

Register Today!

What: Free "PKD Basics" webinar presented by Dr. Ronald Perrone of Tufts Medical Center in Boston

When: 8 p.m. (ET), Tuesday, October 14

Where: From the comfort of your home or office computer

Who: Anyone who has been recently diagnosed with PKD ... family members of those affected ... all those interested in learning more about what causes PKD, how it affects the body and what you can expect through the course of this disease

How: Click here to register! It's quick ... it's easy ... and it's free! Sign up now!

The webinar is the first of a series of free webinars and other educational services planned as part of the PKD Foundation's new patient education program.

Learn more and view a list of upcoming webinar topics.

I didn't marry a mutant

2008-09-26T21:37:00.003-04:00

Because there has been no known family history of PKD in Jeanne's family, it's always been assumed that Jeanne has a mutated form of Polycystic Kidney Disease. Estimates vary, but generally it is believed that about 10% or so of people with ADPKD have obtained it through a spontaneous mutation, with the other 90% inheriting it from their parents. Personally, I've for some time suspected that the mutation rate was probably somewhat overestimated, because it is certainly possible to have a mild enough form of PKD that you never experience kidney failure, and perhaps never learn that you have PKD.

Earlier this week, Jeanne's brother Matthew had to go into the hospital for gall bladder surgery. Last night we got a call from his wife, Emily. Turns out while in there working on the gall bladder, the doctors noticed that he had cysts on his kidneys. While he hasn't been officially diagnosed with PKD just yet, it isn't to hard to connect the dots on this one.

So, it appears that perhaps Jeanne isn't a mutant after all.

PKD in the comics

2008-09-22T20:43:00.002-04:00

Walk Day 2008

2008-09-20T21:46:00.004-04:00

Today was the Hudson Valley Walk for PKD. It was a simply fantastic day. The weather was absolutely perfect and everything went off great. This year, Jeanne and I helped out with the pre-walk registration process - I was helping guide people in filling out their registration forms and Jeanne was passing out T-shirts.

TJ was very excited to learn that some ham radio operators were helping provide emergency communications for the event. He happened to have his radio in the van, so he went back and grabbed it and then ended up helping out by being one of the folks leading the walkers along the route. The rest of us, as usual, took up the rear and were the last people back.

We were very happy that Rick and Sheila decided to join us this year and glad to have my parents rejoin us as well. We tried to get a full team picture, but Eric ran away before the picture could get snapped. So, we'll have to settle for an "almost full team" picture. Here it is:

Based on our success in last year's fundraising efforts, TJ and I were honored with our own named sections of the walk:

TJ received a trophy again this year for once again being the 2nd place youth fundraiser.

This year, Shop-Rite sponsored a water-break along the way:

Also new this year was some added "security".

The stormtroopers provided free instant photos with them for everyone who wanted one.

In the ceremonies after the walk, Kirsten led a group of us volunteers in presenting a restaurant gift certificate to Heidi to thank her for her five years of running the walk. Heidi will be stepping down after this year as walk coordinator, although she continue to lead the Hudson Valley Chapter. She's hoping that by handing off the walk responsibilities, she can expand the range of events and activities that the chapter performs.

After helping clean up, we all headed back up to our house for a small barbecue. TJ and Sheila went off and played some tennis while the rest of us enjoyed the beautiful weather sitting around the backyard. Then, we all enjoyed some burgers, brats, hot dogs and salads for dinner. It was a really great day!

Poughkeepsie Journal article on PKD

2008-09-14T07:39:00.002-04:00

Today's Poughkeepsie Journal has an article from Laurie Hlavarty featuring our family and the upcoming walk. You can find it on page 3E in the healthy living section or you can check it out online.

Thanks, Laurie, for your help in spreading awareness!

all work and no play makes for a dull blog

2008-09-12T20:55:00.003-04:00

Well, it's been over two weeks since my last post. What's been happening? Well, mostly a lot of work around the house and a lot of work at the job. I took a couple of extra days off to make it a five day labor day weekend... and proceeded to spend most of it laboring around the house.

I finished up Brian and Jason's new room to the point where that have now moved partially in. We still need to get a new carpet in there, so I haven't moved most of their stuff into the new room yet. But, we are letting them sleep together in the spare double bed we have in that room until such time as we get a chance to get another twin bed (we already have one in storage)

Dad came up and helped put in a new sliding glass door in our family room. Jason and Brian are so happy that they can open and close the door to get out of the house there now. The mostrosity of a door that was in there before won't be missed - and neither will the cold draft we felt all winter long.

And Mike and the guys from DBS have been making great progress finishing our basement. They are just about complete - just some final touches next week and they should be done.

Mostly I've been painting - painting Brian and Jason's new room, painting pantry doors, painting the trim around the new door in the family room, and of, course, painting the basement...

Of course, I did have some help...

Meantime, there are only eight days left until the walk. Team Teddy Bear has managed to raise over $3600. Great job, team! The Hudson Valley Walk for PKD as a whole is now over $38,000. It's not too late to make a donation, so please feel free to head on over and support the cause.

Team Teddy Bear, Chicago Style

2008-08-27T21:23:00.002-04:00

I happy to announce the grand opening of the Midwest Chapter of Team Teddy Bear. My sister-in-law, Alexis, has decided to join our team's fundraising efforts this year by starting up a team in the Chicago Walk for PKD. Team Teddy Bear Chicago will be walking on Sunday, September 21st at Busse Woods Forest Preserve in Elk Grove Village. Alexis is hoping to round up a few friends to join her. Check out her walk page and help her reach her goal. Thanks for joining us, Alexis!

a fun and productive weekend

2008-08-24T21:56:00.004-04:00

It's getting towards the end of summer and I'm finding myself with quite a bit of vacation time remaining, so I decided to take Friday off and make it a three day weekend. The weekend got off to a bit of a disappointing start, though, as I received a phone message from Kenya at Clear Channel Hudson Valley that they made a last minute decision to not run our PSA for the walk because the actual location of the walk (Bedford Hills) is not within their listening area. I'm guessing this was a decision made not by Kenya, but rather by one of her superiors, as Kenya was well aware of the location of the event, even going so far as to plan which radio stations would best reach those who might be commuting into and out of Westchester County from up here in Dutchess County. I guess the fact that my goal in running the PSAs was to try to draw more people from Dutchess, Putnam and Orange Counties down to the walk wasn't of primary concern to whomever made the decision.

Friday afternoon, I took the boys to the Dutchess County Fair, leaving Jeanne home to rest and relax in a quiet house for a change. The boys all had a good time checking out the animals:

watching the street performers:

and going on the rides:

Saturday was painting day. I'm finally getting around to trying to finish up the painting in what will become Brian and Jason's new room. I think it was April or May when I first started in there, then my "tennis elbow" (which I think I got from power-sanding the glue off of the wall after removing the paneling) delayed me for a couple of months, and then the last month or so has been really busy. So, with a much-improved elbow and a relatively free weekend, I was determined to make some good progress on painting, and indeed I did - all of the priming is done and the blue top coat is well underway!

Saturday night, I took a break from painting and the family went over to Sky Acres Airport, where they recently have opened an ice cream parlor. In addition to enjoying the ice cream, and watching a few planes take off and land, Brian and Jason got to play in an actual working phone booth.

We stuck around long enough to enjoy a beautiful sunset:

Renegades game fundraiser for PKD

2008-08-17T18:37:00.004-04:00

The good news is that the weather was perfect for our Renegades baseball game today. The bad news is that the weather was perfect for our Renegades baseball game today.

About 40 of us braved the heat this afternoon to watch the Hudson Valley Renegades take on the Oneonta Tigers in what I hope will become known as the first of an annual fundraising and social event for the Hudson Valley Chapter of the PKD Foundation. According to the weatherman, the high was only about 85 degrees today, but sitting on the metal grandstands in the bright afternoon sun with only an occasional cloud floating by to provide some shade, it sure felt a lot hotter than that. Only about half of us managed to last the entire game, which the Renegades won by a score of 3-0. Here's some photos I took of the group, before we started wilting too badly:

Around the fifth inning, we had some added excitement, as my nephew Brandon was hit by a foul ball. An EMT took a quick look at him, but it proved to be nothing more than a bruise. After a few minutes, he went right back to enjoying himself. In the end, he ended up with a red welt on his leg and two baseballs - the one that hit him and another one signed by the entire Renegades team. As you can see, that put a smile back on his face!

In the end, I think a good time was had by the group, in spite of the heat. I enjoyed both the chance to spend some time with my family and the opportunity to meet some new people whose lives have been impacted by PKD. And to top it all off, thanks to everyone that showed up, we raised $400 for the Hudson Valley PKD Chapter!

Baseball camp with the Renegades

2008-08-16T16:53:00.003-04:00

For about seven years now, TJ has been attending the Renegades baseball camp for three half-days each summer. If you are one of those parents who thinks the only thing your son needs in order to make the major leagues is the right baseball clinic, then this probably isn't the camp for you. But, if you are one of those parents who believes in your kids having fun playing baseball, then this is the best camp going.

On the last day of camp, all of the kids get to take a shot with one at bat against the Renegades players. Each kid gets his name and picture on the scoreboard and gets to have Zolz officially announce their at-bat. Since the camp had a rainout on Thursday, today was the final day, which was nice because I didn't have to play hooky from work in order to watch the "game". Here's TJ:

Unfortunately for TJ, 13 is the oldest you can be to attend this camp. So, depending on when the camp is held next year, this may have been TJ's last Renegades baseball camp. Of course, Brian and Jason are looking forward to their chance, which I think will come next summer.

more press for our cause

2008-08-16T05:58:00.003-04:00

Laurie Hlavarty, the Healthy Living/Families editor at the Poughkeepsie Journal contacted me via email yesterday evening stating that she plans to run some sort of article relating to PKD and our walk sometime in September. That's all I know at the moment, but I'm very excited. Earlier this week, the paper ran an article about a man from Red Hook who participated in a four-way kidney swap down at New York-Presbyterian Hospital.

the results are back

2008-08-14T19:44:00.002-04:00

...and the good news is that there are no visible signs of rejection of the kidney. There just appears to be some scarring, which is apparantly normal for a kidney 10 years post transplant.

Of course, there is still some work to do to get the creatinine levels and cyclosporine levels back where we'd like to see them. But, it appears that, at least for the moment, everything can be handled with biweekly lab work and adjustments to medication levels.

Thanks to all of you who have cared enough to express your concern to us.

fear of rejection

2008-08-11T19:21:00.002-04:00

No, its not that I'm overly concerned with whether the readers of my blog will like my postings or not. Unfortunately, I'm concerned with something more serious: kidney rejection.

Jeanne's lab results haven't been behaving themselves lately. First, her creatinine clearance levels have been somewhat elevated over the past few months. That was of some concern, but then more recently, her cyclosporine levels have been too low as well. Her nephrologist tried to combat this by increasing her medications, but a few weeks later, the cyclosporine levels haven't gone back up at all. So, now her nephrologist is concerned that perhaps the kidney may be beginning to be rejected. So, this Wednesday, Jeanne is scheduled to have a biopsy done of her kidney (the new one, of course). They will take the tissue and examine it for "visible signs of rejection". If they find some, they she will probably need to be hospitalized for a few days so they can work on getting her straightened out with some IV medications.

Hopefully, one way or another, they can get everything sorted out for her soon.

team week

2008-08-10T20:51:00.002-04:00

Well, I was supposed to have a followup post at the beginning of the week about "Team Week" where I was hoping I would summarize what team week was all about and maybe spend some time sending out some followup emails trying to motivate some additional fundraising. Didn't happen.

Instead, it turned out to be a crazy week and things PKD-related took a back seat. Last weekend, we were up in Vermont for the Sayah family reunion. It was a quick trip this time - up Saturday morning, back Sunday night. I'll post more on this separately later, along with some pictures. We got back late Sunday night to find an answering machine full of messages, so we knew something was wrong. The bad news was that Jeanne's Mom had fallen down the stairs and was in the hospital with several broken bones. Then, Monday, more bad news, as one of Jeanne's cousins passed away from stomach cancer. And on top of all of that, I had an incredibly busy week at work. So, anything to do with fundraising or anything else related to the walk was way down the priority list the past week.

But, despite doing absolutely nothing during the week to deserve anything, our team was lucky enough to win the Thankful Thursday award of a PKD Foundation "bag of goodies". Our team was randomly drawn from all of the teams that had at least 10 registered team members. Other winners for the week were Three Peas in a Pod on Motivational Monday, the Dream Team on Two-for-Tuesday, and Hooked on Hope on Wild Wednesday.

So, today, I'm finally getting around to catching up on things related to the walk. We've received a few more donations over the past week and our total is now up to $2195. Thank you to all of you whom have supported us so far!

progress on walk planning

2008-07-30T21:28:00.003-04:00

I've been spending a lot of time lately on walk-related activities. We had our August planning meeting last week and it sounds like everything appears to be coming together well.

The corporate sponsorship gathering phase is over now. I guess I had some amount of success helping Michele out here, although I was hoping for more. I was able to obtain one cash sponsorship and two in-kind gifts that we can use for raffle prizes. At least I didn't come up completely empty.

So, now my focus is on helping Diane with media and publicity. One aspect of this has been trying to contact local newspapers and generate some interest in writing articles related to the walk. So far, I haven't had too much success on this front. One obstacle I seem to be running into is that the papers I am trying to work with are local to me, but not particularly local to Bedford Hills where the walk actually takes place. But, we do draw people from these areas to the walk, and we do have people in these areas who are willing to share their stories with the media, so I haven't given up hope completely yet.

Another aspect of publicity that I am working on is contacting radio stations requesting them to air some public service announcements. Here, I seem to be making some progress. Clear Channel Hudson Valley is working with me to produce a 30-second PSA which they can air on their local stations and I've also provided them a 15-second spot produced by the Foundation. I'm going to try to contact another station or two as well.

Then, there are some of the easier aspects of publicity - adding the event to online community calendars, and distributing posters and brochures throughout the area. I've submitted to every online calendar I could find. And, I hope to get started on brochurse distribution over the next couple of days. Unfortunately, we are still waiting for posters to be delivered from the printer.

And, oh, yeah - the actual fundraising! Well, Team Teddy Bear has gotten itself off to a good start. With some offline checks that have yet to be posted to our total, we're already at $1880. Thanks to all of you who have contributed to date! Next week will be "Team Week" where the various teams who have registered will compete for chances to win some prizes. I'll post details on this later for those who might be interested.

And, finally, the Hudson Valley Renegades PKD fundraising event is now all sold out. If you are interested and missed out, please do send me your contact info anyway so I can make sure you are included next year. Since it has been so popular, I definitely intend to plan holding a similar event again in 2009 - except I'll start the planning process earlier so we can get more tickets before the game sells out.

Party for TJ

2008-07-19T20:41:00.008-04:00

I'm not sure where all the time went, but eight days from today, I'm going to be the parent of a teenager. I don't know exactly how it started, and I sure don't recall TJ asking me for my permission - but here he is turning into a young man right in front of my eyes.

Today we had the family over for TJs party. It was really hot so Jeanne suggested we get out the Slip 'N Slide which has been sitting in our garage still unpacked for a few years. The kids all had a great time.

TJ was the master of the belly slide!

The funniest moment of the day was when Brian and Jason were told that they had to go and change out of their wet bathing suits before they could sit on the couch. They left the room and came back like this:

It was truly hilarious that they decided to do this all on their own. But, I'm a little worried if they can plan something like this together at 4, what will they be scheming together when they're 14?????

For TJ, I think the highlight of the day was receiving his very own guitar!

Happy bloggiversary

2008-07-17T22:22:00.002-04:00

A year ago today, I made my first post to this blog. At the time, I really didn't know where I was headed with it. But, I've found I really enjoy blogging and the opportunity it provides to share experiences both with close friends and family and with people I have never met (and likely will never meet) face to face. Thanks to those of you who have encouraged me to continue by leaving a comment, sending an email or linking to my blog from your own web pages. And to those of you frequent visitors who have been lurking anonymously in the shadows, don't be afraid to check in and say "hi".

We could use more people like Melissa

2008-07-09T07:16:00.003-04:00

In case you haven't done so yet, I highly recommend reading the newest addition to my blog roll, The Gift of Life. Melissa's blog is about her "journey into kidney donation" as she has altruistically agreed to donate one of her kidneys to a complete stranger (who happens to have Polycystic Kidney Disease) through http://www.matchingdonors.com. Her surgery is scheduled for next week. It's well worth your time to start from the beginning and read her whole story. It is very inspiring.

An All-American Fourth of July

2008-07-05T12:33:00.006-04:00

For Independence Day yesterday, our family celebrated by going to Washington's Headquarters in Newburgh where they were having a special event "Birthdays and Baseball". Now, combining George Washington and baseball on the Fourth of July - does it get any more American than that? The event was led by Mickey "the Lip" Tangel - a vintage baseball expert. Mickey held a show where he demonstrated the equipment used in the early days of baseball back in the 19th century and talked about the rules and how they have changed over the years. For example, it used to be that you were out if the fielder caught the ball on one bounce and there really were no official balls and strikes, although the umpire would issue "warnings" if the pitchers made bad pitches or the batter failed to swing at good pitches.

In addition to the show, Mickey organized a wiffle ball game where the kids played according to the baseball rules used in 1864. TJ, Jason and Brian all had a great time playing.

Here's Mickey setting the lineup for one of the teams:

Jason leads off and smacks the ball off of the tee.

Brian swings hard trying to bring a run home.

TJ makes a valiant effort to field the ball near third base.

This guy was the umpire for the game. I couldn't decide if he looked more like Willy Wonka or The Penguin from the old Batman shows.

We all had so much fun with all of the baseball stuff, that by the time we went in for a tour of Washington's Headquarters, we found we had missed the last tour of the day. We did spend a little time looking through the small musuem they had there and also checked out the Tower of Victory on the property.

Around 5, we headed out for some dinner, then came back to the grounds to watch the fireworks being launched out on the river.

All in all, a really fun day! Hope yours was as well!

Minor facelift

2008-07-03T17:53:00.002-04:00

I took a little time to clean up my blog layout this afternoon. Mostly I just removed some old links and rearranged the order of items a little bit. The one significant change I made was to upgrade my blog list to use the new Blog List page element that Blogger released. I imagine this will be a nice upgrade for those visitors who like to use my blog as a jumping off point for visiting other PKD-related blogs. The new tool orders the blogs with the most recently updated blogs on top and also tells you when the last post to the blog was made. So, now rather than constantly clicking through to check if a blog was posted to since the last time you visited, you can easily see at a glance which blogs have recent updates. Hope you enjoy the update!

Team Teddy Bear 2008 Open for Business

2008-07-02T22:29:00.004-04:00

Well, it's now official. Team Teddy Bear is back for a third year walking in the Hudson Valley Walk for PKD. I've finally gotten around to getting my web pages together this evening. You can check out our team page here and my own page here. TJ jumped right in the other day and has managed to raise $70 already!

Please take some time to check out our walk pages and consider donating to the cause, or better yet joining a walk near you.

Ocean City Vacation

2008-06-29T20:14:00.010-04:00

Yesterday, we returned from our family vacation in Ocean City, NJ. It was a special trip because it was the first time that my parents, my siblings and I all vacationed together with our families. We rented the top two floors of a three story house and had wonderful accomodations for a week together at the Jersey Shore.

We couldn't have asked for any better weather. Except for a couple of late afternoon storms, the weather was sunny all week long. So, we were able to get a lot of beach time - and a little more sunburn than we would have liked as well. TJ had it pretty bad on his upper body the first day and Dad (aka Pop-Pop) was burnt to a crisp on the top of his feet.

In addition to all the time spent on the beach, we took a few trips to the boardwalk to go on some rides, play some mini-golf, and drive the go-karts.

One afternoon, we walked over to a nearby playground with the little kids. They had a great time. And of course, we took lots of pictures for Sheila's new NJ playgrounds website.

Another day the town held a street festival. The kids went on pony rides, saw Bert and Ernie and visited clowns who made balloon creations.

They also had several street performers playing music. Mom and Dad got into that.

Of course, at the end of the day, it was bathtime.

Yesterday, we had to vacate the house. However, before we came home, we first headed south to Cape May to visit the lighthouse.

Our timing was great because just as we got there, they were starting an animal show where the kids got to touch several critters, including frogs, lizards, snakes and a bunny rabbit.

While getting ready to leave, TJ found a brochure for a nearby aviation museum which sounded interesting, so we headed there next.

We all came home exhausted, so we must have all had a great time!

Take me out to the ballgame(s)

2008-06-20T22:01:00.003-04:00

Last night, our whole family gathered together in New Jersey at Commerce Bank Park to watch the Somerset Patriots in action. The event was a fundraiser for the Circle of Life Children's Center in NJ. This organization provides hospice care for families of children with life-limiting diseases. A friend of Mom's was organizing the event, so she invited all of the kids and grandkids along.

We all had a great time. The promotion for the game was "Father's Day Observed" so they gave out team picture frames shaped like stadium scoreboards to all of the dads. TJ was lucky enough to be chosen as a between-inning prize winner and received a baseball autographed by Sparky Lyle, a frisbee, a soda can insulator and a VHS tape of Frosty the Snowman. The Circle of Life organization held a 50/50 raffle, which I bought five tickets for. I should have bought six, as I missed out on winning the pot by one number!

The highlight of the night was that the kids got to go out onto the field during the seventh inning stretch to sing Take Me Out To The Ballgame.

Meanwhile, I've finally gathered up enough interest that the fundraiser for the Hudson Valley Chapter of the PKD Foundation is officially on. We will be going to the Hudson Valley Renegades game at Dutchess Stadium on August 17th. Gametime is 1PM. For $20 you get a general admission seat to the game, a meal ticket (hot dog, chips and a soda) and a Renegades baseball cap. $10 of each ticket purchased goes to the chapter and counts as a tax deduction. If you are reading this and are interested in going, let me know.

we pause for this commercial message

2008-06-17T19:42:00.003-04:00

My sister-in-law Sheila has created a new website which I think is a wonderful concept, so I feel compelled to give it a plug. The website is http://www.njplaygrounds.com and is a guide to playgrounds throughout New Jersey. She's started with her home county, Union County, but hopes to expand the information on the site to cover the entire state. Check it out!

busy, busy, busy

2008-06-14T07:05:00.002-04:00

Well, my blogging has sure fallen off lately, hasn't it. It's a lot easier to find the time to blog when the weather isn't so nice. And, when I'm not trying to get a bedroom repainted and a basement finished (despite a sore arm). And when things at work aren't quite so busy, etc. etc.

The planning and preparing for the walk continues. On the corporate sponsorship front, I was able to obtain some certificates for a free tour and wine tasting from Millbrook Winery which we can either use for raffle prizes or "team week" prizes.

I'm also attempting to organize a group outing/fundraiser to the Hudson Valley Renegades for August 17th.

And, now it is time to start turning my attention to media and PR for the event. I attended a conference call on the subject the other night which was hosted by the PKD Foundation. It provided a lot of useful information. Between that, and all of the advice that Diane, our Public Relations Chair, has given me, I feel like I have an idea of what I need to do here - maybe....

I'm told the walk website will be up in the next week or two. Soon, after that, Team Teddy Bear 2008 will be open for business. I know TJ is chomping at the bit to start his fundraising.

That's all for now - gotta go grab some breakfast and get dressed. Brian and Jason have soccer in about an hour.

Happy Kidney-versary!!!!

2008-05-26T21:14:00.002-04:00

Ten years ago today, Jeanne received her kidney transplant. Somehow, it seems fitting that on a holiday where we take time to remember those that sacrificed for our country, I also get to remember the sacrifice that Susie made by donating her kidney to Jeanne.

I still remember that day rather vividly: rushing out very early to be able to see them off to surgery, only to end up having the surgeries delayed until almost noontime; trying my best to keep myself busy in the afternoon by leaving the hospital for a few hours; later in the afternoon, back at the hospital, pacing, pacing and more pacing waiting for Jeanne and Susie to finally get out of surgery; then finally seeing Jeanne back at the room and being amazed at how good she looked. It definitely was one of the longest days of my life. But looking back now, I think I need to count it among one of the best days as well.

thanks to my first two walk sponsors!

2008-05-13T22:17:00.003-04:00

I got an email today from Michelle who let me know that she's received two positive responses to my sponsorship requests. The first is from Dutchess Building Specialists, who has made a cash donation. Brian and his team define professionalism in the home remodeling business. They did a fantastic job on our kitchen four years ago and we're having them back to finish our basement later this year. The other donation is from the Hudson Valley Renegades, our local minor league baseball team, where we've enjoyed many a summer evening over the last 14 years. They've sent along a coupon for game tickets. My sincere thanks to both of them for supporting our walk.

News and Notes from May Chapter meeting

2008-05-10T07:07:00.002-04:00

Wednesday night was the May meeting for the Hudson Valley Chapter of the PKD Foundation. News and notes:

The Albany walk, which was previously reported to be off, is now back on!

The PKD Foundation will be holding a series of conference calls for volunteers, where they will provide training in areas such as corporate sponsorship, media relations and recruiting.

The target date for the Walk website to be up and running is mid-June.

United Way of Westchester County is holding a Walk for What Matters on June 7th. The way this works is that you can form a team (or walk individually) and the funds you raise go to the charity of your choice. I think this is a great concept for those many local charities that are too small to organize walks of their own.

GINA passes!

Like many other charities, the PKD Foundation now takes vehicle donations. So, if you've got an old clunker sitting around that you need to get rid of, consider donating it to the PKD Foundation. You'll be helping a good cause and getting a tax benefit at the same time.

The bulk of the meeting was then spent discussing the status of the various committees. The focus right now is on getting corporate sponsorships and in kind donations of food and raffle prizes. It seems we currently have a little over $1000 in corporate sponsorships committed and are off to a good start on food and in-kind donations. The big items still to be covered are a tent, a helium tank and plaques/trophies.

I've agreed to help Michele out in the area of corporate sponsorships by trying to recruit additional sponsorships in the Dutchess County area. About a week ago I sent out nine requests for corporate sponsorship and hope to get another five or so out this weekend. One company was kind enough to respond and respectfully decline, but I haven't heard back from any of the others yet. This is the first time I've ever attempted this sort of thing. Turns out it takes a good amount of time to track down contacts, put together letters and get the packages out. And later, it'll take more time in followups. I hope that at least one company comes through with something to make it feel like it was worth the effort.

Unfortunately, Diane wasn't there to give an update on Media/PR. I've agreed to help her out by handling publicity in the Dutchess County area, but I'm feeling pretty ignorant of what to do at the moment. I understand that this really needs to get going over the next couple of months, so I'll have to be a quick learner.

The conference call originally planned for May 12th is cancelled.

There will be a support group meeting at Michele's house in White Plains on May 28th, subject to cancellation if there are no RSVPs.

The next chapter walk planning meeting is scheduled for June 3rd.

Upcoming PKD Foundation, Hudson Valley Chapter & Walk Events

2008-05-01T19:42:00.002-04:00

Walk for PKD Planning Meeting
Wednesday, May 8, 2008 7:30 p.m. to 9:00 p.m.
Bedford Hills Community House
74 Main Street, Bedford Hills, NY

Walk for PKD Planning Conference Call
Monday, May 12, 2008 (tentative)
8:00 p.m. to 9:00 p.m.
Date to be finalized at 5/8 meeting
Focus on Sponsorships and Publicity
Contact hudsonvalleychapter@pkdcure.org for call-in information.

PKD Support Meeting
Wednesday, May 28, 2008
8:00 p.m. to 9:00 p.m.
Michele and Matt Karl’s Home
White Plains, NY
Call 914-953-1163 or email m3karl@optonline.net to RSVP or for directions. ** NOTE: If there are no RSVPs, this meeting will be cancelled. So, please call if you are interested in attending. **

Walk for PKD Planning Meeting
Tuesday, June, 3 2008
7:30 p.m. to 9:00 p.m.
Bedford Hills Community House
74 Main Street, Bedford Hills, NY

All are welcome at the Support Meeting or as we continue planning for the 2008 Hudson Valley Walk for PKD. Join us at a Walk Meeting to learn about what goes into making the walk a success and how you can get involved!

Can’t make it to the meeting? We are holding the Planning Conference Call just for you! This is a way to help anyone in the Hudson Valley get involved!

For information on the Walk for PKD or Walk Planning Meetings and Calls, please contact Heidi Cambareri, Hudson Valley Chapter Coordinator, at 914-953-1163 or hudsonvalleychapter@pkdcure.org.

Vote for Starbucks idea "A Penny to fight PKD"

2008-04-23T20:39:00.003-04:00

I came across this blog post from Supergirl which points to a Starbucks idea where someone is proposing that one penny of every cup of coffee or tea sold by Starbucks would be donated to the PKD Foundation in honor of Sandra Andersen, a Starbucks employee who recently donated a kidney to one of her customers who had PKD.

I gather the way this program works is that anyone can submit an idea to the website. Then, a team of Starbucks employees gets together from time to time and evaluates the various ideas and decides whether or not to proceed forward with them. One of the factors they take into account is the popularity of an idea and they provide a voting mechanism whereby you can show your support for an idea. Currently, the "Penny to Fight PKD Campaign" idea is one of the most popular ideas submitted to date. So, I highly encourage anyone reading this to go over to the Starbucks website, sign up for an id, and show your support by voting for this idea. I just did so myself. Even if Starbucks does not end up adopting the idea, the publicity that comes of this idea being popular can only be a good thing.

Seeing the Pope at the Youth Rally

2008-04-20T22:33:00.002-04:00

TJ and Jeanne were privileged enough to obtain tickets to see the Pope yesterday at the Youth Rally at St. Joseph's Seminary down in Yonkers. Despite having to deal with some logistical problems with food and transportation, they thoroughly enjoyed the day as an experience of a lifetime. And the weather couldn't have been more perfect - especially considering that it is still April here in New York.

I found the experience powerful just watching it on TV. I'm sure it was even more so being there in person.

Here's TJ hanging out soon after arrival.

And here is the view from the spot that the group from St. Martin's scouted out.

Unfortunately, the plan for distributing food wasn't working out so well. After waiting on line for almost three hours trying to get something to eat, Jeanne started to become faint and had to be brought to the first aid station.

Soon after, they closed off the outer area where Jeanne was so that she couldn't get back to the rest of the group. The good news was that this enabled her to get a good view of the Pope's arrival in his Popemobile.

They did have a Jumbotron in the area available to watch the ceremony from, but unfortunately, there was no audio.

Jeanne did find a taller girl (from Pleasant Valley) to reach up high and take some photos from their remote location. I'm glad I invested in a good optical zoom when we bought our latest digitial camera.

TJ thankfully was able to watch the ceremonies from the closer location, but since Jeanne had the camera, they didn't get any good pictures from that vantage point.

Jeanne didn't mind too much that she had to watch from so far away. After all, how many other people can say they've hung out with nuns in baseball caps?

Senate to debate GINA this week

2008-04-17T20:08:00.002-04:00

I got an action alert from the PKD Foundation yesterday. The Senate apparantly will finally be getting around to debating the Genetic Information Discrimination Act this week, nearly one year after the bill was passed by the house. For more information, see the PKD Foundation web site. The science of genetics has made some amazing advances in recent decades. However, without sufficient legislation in place to protect against genetic discrimination, one runs the danger of putting themselves in a worse position knowing they definitively have a disease like PKD than if they didn't know.

Unfortunately, I've checked a couple of congressional web sites and can't find any mention of it being on the agenda. If someone finds some information on GINA being discussed in the Senate, please leave me a comment pointing me to it.

First Walk for PKD planning meeting for 2008

2008-04-13T09:25:00.002-04:00

Last Thursday night was the first planning meeting for this year's Hudson Valley Chapter Walk for PKD. It was also the first one ever for me, as I attempt to get more involved in the chapter happenings.

The big change for this coming year is that there will be two big "professionally run" walks which will be held in New York and Los Angeles. These will be held in October instead of September, when the rest of the walks around the nation will be held. Because of the proximity of our walk to New York City, some of the changes they are making for the New York City walk will impact our walk, including the elimination of the registration fee and a requirement to raise $100 in donations in order to receive a T-shirt. While I welcome the elimination of the registration fee, I'm not sure how well received the "no T-shirt unless you raise $100" will go over. Heidi mentioned that of the 247 walkers we had this past year, only 65 raised $50 or more. If all goes the way the PKD Foundation envisions, those 180-ish other people will become motivated to raise more money. We'll see.....

We also found out there will be no walk in Albany this year. This is pretty disappointing, as the Albany walk raised over $34,000 last year. Hopefully, some of those walkers will be willing to make the trip down our way, or to one of the walks in western New York.

The bulk of the meeting was spent describing the various walk committees which are in place, who's in charge, and what help they need. For me, since I'm about 50 miles away, I think I'll focus on things that I can handle from a distance - helping to obtain sponsorships, raising publicity through the media, distributing posters and fliers and things like that.

Upcoming meetings over the next couple of months:

Tue, April 15 - Walk for PKD Planning Conference Call
Wed, May 7 - Walk for PKD Planning meeting
Wed, May 28 - Support Group meeting
Tue, June 3 - Walk for PKD Planning meeting

Sharing Our Story

2008-04-02T21:54:00.002-04:00

Heidi, who is the Hudson Valley PKD Chapter Coordinator, invited TJ and I to share our PKD stories such that they might be used for publicity purposes for this year's Walk for PKD. We finally got around to filling out the necessary paperwork tonight after TJ finished up his homework. Here are TJ's responses to some of the questions which were asked on the form. Since its not something we tend to discuss much, I found it very interesting to hear his perspective.

2) Please provide a summary of your experiences with PKD. (We’re especially interested in details such as whether you’ve had a transplant, how many people in your family have PKD, when you were diagnosed, what your health is like now, etc…)

My mom was diagnosed with PKD before I was born. Her being pregnant with me took its toll on her kidneys and three years later, she needed a transplant. She now has to take several medications a day on a time schedule in order to keep her body from rejecting the kidney. In order to possibly find a cure for this disease, I have raised more than $1000 through the Walk for PKD and hope to raise even more this year.

3) What is your hope for your family’s future and the future of PKD?

I hope that my brothers and I do not have the disease and if we do, that we can help find a cure through clinical trials.

4) Why do you support the PKD Foundation and its vision that “no one suffered the full effects of PKD?”

I support the PKD Foundation because it is the only organization that devotes the funds that it raises to the awareness and research of this disease which the US government pays relatively no attention to, even though it is more common that several other diseases it pays more attention to. I feel that the government should pay more attention to this disease because it affects more of the population than these other diseases.

CTY Odyssey Day at UConn

2008-03-30T19:15:00.003-04:00

TJ recently was accepted into the Center for Talented Youth program run by Johns Hopkins University and yesterday he got to attend his first event, which was an Odyssey Series program being held at the University of Connecticut and sponsored by the university's College of Liberal Arts and Sciences. It was a very impressive program. About 100 students in grades 7-10 attended. There were some full group sessions and then three small (10-20 student) sessions, where each student got to choose from one of about eight difference choices. TJ's choices were to attend the following sessions:

1) A rule to trick Arithemetic where the students all learned about modular arithmetic, how 7 +27 can equal 10, and how one can use modular arithmetic to predict missing numbers off of UPC labels.

2) Chemistry is Fun where the students tried out various chemistry experiments and then enjoyed "instant ice crean" made by the professor from cream, half and half and liquid nitrogen.

and his favorite:

3) Podcasting, What Why and How where the students were introduced to podcasting and got to help make their own podcast which you can listen to here.

For me, I found one of the keynote speeches very intruiging. It was a talk by Dr. Rachel O'Neill entitled Unlocking the Secrets of the Human Genome. She dicussed the emerging field of genomics, which is taking the results of the recent work to map the human genome and using that information to better understand the workings of the human body. She decribed one recent case from 2005 where researchers were able to create a modified version of the HIV virus which they were able to use to attack and destroy cancerous melanoma cells. While I certainly don't have the background to understand the science behind this, I find it very exciting that there seems to be so much progress in this field. Hopefully, this field of science can lead to some new treatments and potentially even cures for genetic diseases such as Polycystic Kidney Disease.