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 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 24th.

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

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!