Looking for a Kidney

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. 

 

Background

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.

 

The Details

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.

 

My Challenges

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.

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  • The anemia and fatigue are the biggest issue for me, I am doing retacrit  once a month, and Iron infusions based on test results. I have a PD tube for when I start dialysis (closed port procedure, - when it's time they will make a small incision and pull out the end of the tube). I have become very careful with my diet, am lucky that I have always hated dark cola drinks...In many ways COVID has been a good thing.  Deborah and I are aging out of the show circuit as wheelchair travel is not fun in a show situation.  Making it even more fun, most of Deborah's work I  would cast at the community college, and/or use the laser, and CNC router as well-BUT  the on campus resources are CLOSED. So I am modeling with the 3D printer for now.  Being able to do PD will give me more flexibility, but doing in an art fair setting will be interesting.  Thanks for your support

  • I'm going to add that anemia is common with Kidney failure as the kidneys supply a hormone to make the bone marrow produce red blood cells. You'll get weekly IV iron to keep your hemoglobin up and that will give you more energy. You'll have to watch your potassium and phosphorus intake. I don't, or rarely drink dark cola drinks as they are loaded with phosphorus that the kidneys will struggle to get rid of. The same goes for tomatoes, potatoes, and orange juice as they are high in potassium. I drink little tomato juice, stopped eating potatoes, drink pineapple juice and apple juice instead of orange juice. It's a small concession to stay healthy. My advice is to start dialysis soon before you plummet too low and lose too much physical conditioning. It'll take much of the load off your kidneys and prolong their remaining functioning. I know of people that have been on dialysis for 20 years. It doesn't stop you from getting a transplant when it becomes available and it keeps you alive to be available to receive a donor kidney. I've been on dialysis for a year now, still using a permacath in my neck, and should be able to get the PD surgery in a couple of months so I can do the dialysis at home. I have a great nephrologist, the best in the state, and he says if he had to be on dialysis, the PD method is what he would prefer hands down.

    The thing I want to stress is that I felt tremendously better after starting dialysis. I lost a large amount of fluid buildup, my hemoglobin came up from mid 7's to 11, still low for some but I've had low hemoglobin all my life, there was a jump in mental acuity, and I have more zest for life.

    You can contact me through PM here if you have questions I can answer. 

  • Going on dialysis is not a death sentence, neither is it the end of the world. My kidneys starting going downhill about 5 years ago. At first they were stabilized and I regained a lot of efficiency, but every now and then they would drop and plateau. Last year about this time they dropped below 10% efficiency, along with cardiac problems, and I had to go on dialysis. I lost almost 50 pounds that were due to slow fluid retention that the kidneys weren't getting rid of. I was trying hard to lose weight and not succeeding, and as it turned out, I was losing weight but the fluid build up was masking it. I feel much better with dialysis three times a week now. 

    I still have the freedom to do shows as long as I schedule a dialysis near where I'll be at. My next step is to start doing peritoneal dialysis where I do it at home as I sleep. That one is a daily thing, easier on the body, and is a simple process to do yourself. It also has the advantage that you can take minimal equipment with you when you travel.

    Good luck with the journey, but remember a lot of people are doing that successfully and leading full productive lives. 

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