Saturday, September 17, 2011

one week until the 2011 walk

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, visit my personal page at, or check out my blog at

Thanks again,


Sunday, July 24, 2011

2011 Walk Letter

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 24th. 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

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 24th.

If you wish to help in the fight against PKD, you can make a secure donation online at or visit my team page at 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!


Monday, July 18, 2011

another link in the chain

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!

Saturday, June 25, 2011

four months later

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.

Monday, April 4, 2011

followup #3

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.

Saturday, April 2, 2011

A week without a doctor's visit

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.

Friday, April 1, 2011

PKD Seminar in NYC tomorrow

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
Registration Costs: $15/person or a Family Package of (4): $50.00
Includes a light lunch and beverages (coffee/tea - regular and decaf, water)
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!

Sunday, March 27, 2011

Pinewood Derby

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!

Monday, March 21, 2011

second post-surgery followup visit

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.

Thursday, March 17, 2011

Meet Barbara and Karen

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.

Saturday, March 12, 2011

first post-surgery followup visit

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.

Thursday, March 10, 2011

tired of being tired

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.

Sunday, March 6, 2011

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

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.

Wednesday, March 2, 2011

a look back at surgery day

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.

Tuesday, March 1, 2011

strep throat

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.

Monday, February 28, 2011

Jeanne arrives home

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.

Sunday, February 27, 2011

home again

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.

Saturday, February 26, 2011

All is well

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.

Friday, February 25, 2011

My turn

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.

Thursday, February 24, 2011

6:30PM update

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!

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

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!

Wednesday, February 23, 2011

Here we go!

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!

Monday, February 21, 2011

clear skies ahead

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.

Sunday, February 20, 2011

Getting ready

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!

Wednesday, February 16, 2011

pre-op testing day

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!

Tuesday, February 15, 2011

pre-op testing is tomorrow

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.

Monday, February 14, 2011

Happy National Donor Day

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.

Saturday, February 12, 2011

Friday visit to NY Presbyterian

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 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

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.

Thursday, February 10, 2011

we have a match!

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!