Giving v. Taking; Transplant 101

Hey all! I am back from my round of medical tests - you would not even believe all the places on my body that were xrayed, sonogrammed, echoed, CT'd, scanned, poked, pricked, and prodded. I am going to start journaling something like, Kidney Transplant Procedures 101.

One thing that happened throughout the day was that everywhere I went, one diagnostic room after another, each technician asked “are you a giver or a receiver?” It gave me pause to think about donors. I've been thinking about deceased donors - but there are living donors out there too. A lot of them are officially known to the transplant center as “altruistic” donors. Amazingly enough, these altruistic people simply call the transplant center and tell them they wish to donate one of their kidneys, just because. I find that absolutely totally amazing and “altruistic” doesn't even come close to defining such an extraordinary gift.

I also felt kind of selfish when I was asked if I were a giver or a receiver - interpreting the question as “I'm a TAKER.” Take! Take! Take!

I was simply amazed that there are people out there that think nothing about giving up one of their kidneys – they are willing to go through all the medical tests, the surgery, the follow-up, and living the rest of their life with one kidney.

From here, I have to wait for approval from the transplant committee (if any of the tests come back showing some other illness or cancer – things could change badly). I should be officially “on the list” in three weeks.

Here’s a little tidbit: there are three times the amount of people who NEED kidneys over the amount of kidneys available at any given time.

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Transplants, Waiting Periods, Insurance Gods, O My

Dying for a transplant
John Stucke
Staff writer
March 26, 2008

Fred Watley is missing his chance for a liver transplant.

A new organ may have helped the 59-year-old substance abuse counselor steer more teens away from drugs and booze; may have helped him raise his 10-year-old son into a young man; may have helped him grow old with LiAnne, his wife of 11 years. . . .

I was dismayed when I read this article in the Spokesman Wednesday morning. The intertwining of transplants and health insurance coverage is a sticky subject. It is beyond comprehension that the government would support waiting periods for insurance companies on transplants. I can hear their little wheels turning: "gee, if we have a waiting period of six months, the chances are good the patient will die before we have to fork money out for a transplant."

Not only do potential transplant recipients have to go through their insurance company's waiting period, then if they are fortunate enough to get a match with a new organ, they have to go through the surgery, and once home, they have to jump through the Medicare hoops for post-transplant care which includes the very expensive anti-rejection drugs a transplant recipient must take for the rest of his or her life. The catch here is that Medicare will cover an organ transplant for only three years – not for the lifetime of the organ recipient. Again, the governmental mumblings can be heard, saying, "well, we only expect the transplant recipient to live an additional three years, once they have received the new organ. Then they die." So the recipient finds themselves in a position three years after having a successful transplant of paying $3,000 to $5,000 a month for the drugs they must take to keep their organ viable.

It's a matter of life and death. With a transplant, Mr. Watley would have a chance of living 20 years or more. (The down side of transplants is that the new organ will start to fade out after 20 years.) Now he isn't even going to make the six month waiting period.

I have a familial kidney disease, Polycystic Kidney Disease (PKD), which is the most common genetic disease even above diabetes, however the public is much more aware of diabetes than PKD. April is Organ Donor Month. We are hearing ads all the time to encourage people to list themselves as organ donors on their driver's license. Just recently we read about a customer at a Starbuck's in Seattle getting a new kidney from her barrister. Her disease: Polycystic Kidney Disease.

My sister had a transplant eight years ago from a live donor; my brother had a transplant two years ago from a person who had an organ donor card. Both are alive and active and productive. Both were "lucky" in that they lived through the waiting period. My sister was let go from her job (ironically in a transplant center in Seattle) because she was out sick a lot. The problem is that transplant recipients not only have to take 10-20 pills every day to keep from rejecting their new organ, but their built-in immunity is wiped out and they are susceptible to anyone's common cold or flu or other contagious disease and it negatively impacts the organ recipient. She went on Medicare but only received three years of coverage. Being well under 65, she couldn't qualify for Medicaid coverage until her and her husband's income was down to a minimum ($40,000 for a married couple, $2,000 for a single person). My brother is self employed while his wife has excellent insurance coverage for the two of them – so he has a double-sided "good luck" coin: he has insurance through his wife, and, he works alone so he isn't bombarded by sniffles, coughs, wheezes and the cubicle neighbor who has to confide to anyone in breathing-in distance their blow-by-blow latest crud.

As for me, I am living on the hope that I am "status quo" and that I can live to old, old age with no problems with this disease. My alternative is dialysis – even Mr. Watley hasn't had that option. Or a transplant.

Have a spare kidney??????

Polycystic Kidney Disease

Polycystic Kidney Disease (PKD) is actually very common but hardly anyone knows about it. It is more common than diabetes. It affects 500,000 people in the United States and is a genetic disease that will affect whole families for generations. My Dad and his brother and sister all died from it. Their mother died from it. I have a brother and sister, as well as me, diagnosed with PKD. Both my siblings have had transplants, my sister from a live donor, my brother from a cadaver. Both have been very successful, particularly for my brother.

I urge you to consider being an organ donor. Having a transplant is a life saver!