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Dear Family and Friends,
I trust this letter finds each of you safe and calm in the face of the pandemic. I am facing my own health crisis and I am neither safe nor calm!
I am writing this letter to share with you where I am in my life right now and seeking your wisdom, guidance, prayers and assistance.
While drafting this letter, I had a transplant waitlist meeting with the Transplant Center at Georgetown Hospital, Washington, D.C. I have spent the last two years looking for a living donor and waiting out my time on the waitlist. I went into the meeting thinking that I was looking at four to six more years on the list. NOT SO! I have been taken off the waitlist and told that I had to find a living donor within six months! If I fail to find a donor, I am condemned to spend the rest of my life on dialysis. This was quite a shock! I have been processing this deadline, and after one day of shock, I have begun asking for help.
Ten years ago, I was diagnosed with Chronic Renal Disease. This was discovered after a bout with pneumonia. My lab work came back very bad (stage 4-5). While my kidneys numbers were elevated due to my illness, the numbers came down slightly, leveling off to stage 3-4. My primary care physician had me go to a nephrologist. My kidneys continued to slowly decline as kidney disease seems to do – often without any rhyme or reason. It was determined that I would need a kidney transplant. Three years ago I visited the Georgetown University Transplant Center in downtown DC and it was agreed that I, indeed, was in need of this transplant and was placed on the transplant waitlist.
The average wait for a kidney with my blood type is 7 to 9 years if I have to wait for a kidney from a cadaver. Even with the best of care, my kidneys have continued to slowly deteriorate. I have moved to Stage 5 kidney disease (End Stage) with 13-15 % of my kidneys left intact. My health continues to decline. I am very weak and anemic due to kidney failure. I have been able to keep my numbers stable for the last three years but was surgically prepped for kidney dialysis this past winter. So far I have avoided dialysis but I see it coming closer.
My doctors and the Center generally recommend having a live donor for the best chance of a really good outcome. In my case I have no other options and a 6 month deadline. I ask each of you to pray that someone will step forward and this will be a great match. Then I will possibly avoid dialysis. With a live donor’s kidney, my chances for success will be greatly increased.
My blood type is 0 negative. It would be great if the donor was 0 negative but this is not entirely necessary for me to be able to get a transplant. There is a program in place that if the person does not match me, then they might match someone else. Donating a kidney in my behalf, even if not a match, would increase the likelihood of me receiving a kidney in what is called the ‘Pairing Program.’ A donor’s kidney would be “paired” with someone in the kidney transplant bank and another would be given to me as a match. The ideal, of course, is that I would receive the kidney from the original donor.
Live Donors- The Nuts and Bolts
All transplant related medical and travel expenses are covered by MY insurance. There is also a “lost wages” provision.
To Become a Donor, Please Contact:
Medstar Georgetown living donor program at 202-444-3714
Or online at Medstargeorgetown.org/livingkidneydonor
The Living Donor Coordinator will ask a series of questions and will fill in all of the details. To be eligible as a candidate, you must first pass a physical exam to determine if you are healthy enough for surgery . If you pass this stage, you will have a blood draw. The purpose of this blood draw would be to determine if you are a direct match or can be a “paired” donor.
All of this is is paid for by my insurance as is the kidney donation surgery. The surgery for the donor is now done by laparoscope with a hospital stay of about three days. Recovery time after that is approximately two weeks. The Donor Coordinator can fill you in much more on the details and answer any and all questions.
For me, as you can guess, this is another challenge but one that I know I can face one day at a time. My motto is “Be present, live today, tomorrow is another day and it, too, will unfold and present to me what I have for that day.” I cannot help but remember what both my parents and others would often tell me when I was a child. “G-d never gives you anything that you are not given the grace to endure.” I have found that to be true throughout my life and I know that it will not be different this time. With G-d’s grace, I survived being struck by a drunk driver and the loss of mobility, three closed head injuries, and a lightning strike. I will endure this as well but am willing to risk surgery and a lifetime of anti-rejection drugs to let me keep the kidney.
Please keep me in your heart, thoughts and prayers as you consider my situation.
Please Join Jay’s Team of Helpers
I ask each and every one of you to share this letter with at least ten people. Of course, the more, the better. Please place this on your Facebook and other social media wall and your listserves/newsletters. With everyone helping, I have a chance of finding a living donor. I am not a person who asks for help easily but now I desperately know I need help. I also know I can count of you to be there for me as part of Jay’s Team of Helpers.
Thank you in advance for your love, friendship, and support.