Rockland Boulders PKD fundraising event

 

The Hudson Valley Chapter of the PKD Foundation presents a night with the Rockland Boulders!

 

Join us on the evening of Saturday, August 11^th for a picnic at the ballpark and help raise money for the PKD Foundation.  Watch the Rockland Boulders independent minor league baseball team take on the New Jersey Jackals beginning at 7PM at Provident Bank Park in Pomona, NY.  

The price of $30 per person gets you a ticket to the game and includes a 2½ hour buffet beginning at 6:30PM in the “Short Porch” picnic area just beyond the right field fence.  After the game is over, stay and enjoy the Fireworks Extravaganza Pyromusical!

Use the following link to purchase tickets online:

http://rc1.glitnirticketing.com/rcticket/web/logingroup1.php?&password=pkdfoundation&auto=1

Menu includes: 

   hamburgers,

   hot dogs,

   grilled teriyaki chicken,

   baked beans,

   fresh fruit and cheese

   non-alcoholic beverages. 

For more information, contact Bob Sayah

bobsayah@optonline.net

845-444-0186

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 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

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

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

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

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

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.