by Faith Tootell, NS, RD, CDR, FADA
From the Editor: Faith Tootell is a renal dietitian. She works at a dialysis unit, so she knows about organ transplants, professionally. She's also had two of them herself, a kidney and a pancreas, so her knowledge is personal as well. Here's what she has to say:
I have had two organ transplants. Both of them work. I had a kidney transplant in September 1984, and my pancreas transplant in September 2000; so far they've both done well.
I'm 49, and very proud of it. I feel like every year I have a birthday it's an accomplishment. It's kind of funny to watch my friends be so ashamed of getting older. To me, it's some sort of prize. I feel blessed to still be alive.
I was born in New York, but I spent most of my life, except for a couple years in New York and St. Louis, Missouri, in the Bay area, San Francisco, and that's where I live now.
I've always been a very active, independent person, and I was the middle child of a big Irish family, with some very complicated dynamics in our family. My oldest sister was also a type 1 diabetic and was very, very brittle throughout her life. A lot of new discoveries and announcements about diabetes care were happening, but she really wasn't able to take advantage of them. I think she died before home glucose meters were available and so really didn't ever get to take advantage of the new technology.
I was diagnosed at the age of about seven and a half, and I was diabetic until I was 45 or so. Thirty eight years -- and I can almost remember every single minute. By most doctors' definitions I would probably have been considered a "brittle juvenile diabetic," but I would never have described myself that way. I was not in and out of the hospital all the time. I was not going into convulsions, or diabetic coma, or anything like that, but certainly, I had blood sugar jumps all over the place.
To tell you the truth, I think it's funny to look back on it now. I thought I was "normal," then, but now, having real normal blood sugar I can see that I wasn't.
I was about 20 years old when my sister died, and about seven years after she died, my kidneys first failed. I had to start dialysis at age 27. My mother had just been diagnosed with end stage lung cancer, and I just didn't want to be spending the rest of my life on a dialysis machine. Also, I was working full time. I didn't stop working, and in those days I dialyzed at Satellite Dialysis, the company for which I now work. They had a proactive sort of philosophy, because not many people were on dialysis in those days. It was reasonably new, and "self-care" was their approach to the patient.
In order to do dialysis in their facility, you had to be able to set up your own machine, take your own vitals, and almost be able to cannulate yourself, but I did everything else. The idea was to take a more active role in one's own care. That sort of thinking inspired me to think outside the box and just say, "This is not all there is to my life. It is something I have to do to stay alive."
I didn't want my diabetes, or my kidney failure, to define who I was. I wanted it to be part of what I had to do on a daily basis, not be the sum total of who I was. I felt the same way about my kidney disease. Also, back to the sort of Irish family complicated dynamic, my older sister, sandwiched between the two diabetics, very much wanted to donate a kidney to me, and was a perfect match. And in those days, which seems inconceivable now, as you may know, the waiting list was 6 months, not 6 years, like it is now in California. I was going to just go on the cadaver list, but she really wanted to give it to me, and she was a perfect match, so I ended up waiting two years for her kidney, when I could have had one in 6 months on the waiting list. I dialysed for a year and nine months. Then I got my kidney.
My quality of life is tremendously improved now, since I have my transplants. Sometimes I get up and don't always feel good from the myriad transplant medications I'm forced to take to maintain the security of the transplants, but it is a vast improvement over the cognitive fog I used to wake up in from my diabetes. I think that's so important, to dispel that fog.
I'm a renal dietitian at a dialysis unit, at Satellite Health Care, in San Jose, California. The dialysis unit is one division. One thing I try to do with the doctors there is help dispel the myths about diabetes control. You look at a diabetic's bad blood sugar test results, and immediately everybody wants to start pointing fingers at them, saying, "What did you do?" "What did you eat?" "Where did you go wrong?" I know, from my past, I could literally exercise the exact same amount, eat the exact same things, do it all at the exact same time and one week wake up with a blood sugar of 344 and the next week wake up with a blood sugar of 44. It had a lot to do with what was going on with my menstrual cycle, what was going on in my week in terms of demands of my time and energy and emotional level and everything else.
Diabetes is a very complicated disease; there are a lot of factors to keep under control. Some people find it very difficult. The propaganda that you can really control this easily and well is dangerous. Really good self-management is a lot of work, and you're not going to get "perfection." You can improve your control, by trying, by watching everything, by metering often, using an insulin pump, choosing more appropriate insulins/medications -- whatever works for you as an individual. Then you'll do better, but I think you're really setting people up for failure to make them think that they're always going to walk around with a perfect blood sugar of 104.
When I was about forty years old, I started experiencing really bad chest pains. Those can be common side effects of transplants, especially in diabetics, so I was given exercise stress tests, several times, echocardiograms and the whole thing. The doctors didn't want to cath me (give me an angiogram, with dye) because of my kidney. The dye can jeopardize your kidney, so they preferred to avoid that critical test -- and I continued having symptoms of frequent chest pains, but I kept passing the stress echos. This went on for three years.
Finally, I ended up in the E.R. one night at about a quarter until three. Every single one of my arteries had blockage in it, and then I had a major blockage in my aorta right above my transplanted kidney, so it was amazing I had not lost the kidney. I needed quadruple coronary bypass surgery to return to health.
Transplant centers, that had previously been courting me for a possible pancreas, lost interest in me, then. As soon as I had gotten the bypass, they weren't interested in me anymore. Once you have complications, many don't want to take the risk on you. Once you really need the pancreas, they don't really want to give it to you. (Editor's Note: It's called "cherry-picking," this choosing only the healthiest candidates, and it is done to make a given center's success rate look as good as possible. Not all centers engage in this questionable practice.)
I went for the pancreas, because I had to. In September, 2000, I went to see Dr. David Sutherland at the University of Minnesota Transplant center, in Minneapolis. I fully expected to have to beg for my life. I think I was there for less than ten seconds when he looked at me and said, "What took you so long to get here?" It was the first notion I had ever had that I might actually see a day in my lifetime when I wasn't diabetic, and I just burst into tears. I tried to say, "I'm sorry, Dr. Sutherland. I'm not usually this emotional," but I just couldn't. It was so hard for me to believe.
Once you get kidney disease, it's another complication. You're never exactly the same as before you were. So a transplant is a way to treat it, but it's not a "cure"; you're still considered a stage 5 kidney disease patient. The transplant should be thought of as "renal replacement therapy." By the way, Medicare now covers pancreas transplantation; it is no longer classified as 'experimental."
Living with a transplant is never the same as before your kidney failed. The immunosuppressive medications you must take forever are not kind, and can have very severe side effects. The ones I'm very concerned about, because I've seen it happen to my patients, more than it has happened to me, are adult diabetics who have received their transplants, been put on Neoral and Prograf, and had blood sugars that have climbed into the seven hundreds. Some of these folks lost their eyesight the second they got their kidney transplant.
The kidney/pancreas transplant is not appropriate for every insulin-using diabetic. I would just caution anyone who is on dialysis and is a diabetic against thinking all your problems are over if you've got a pancreas and a kidney. You trade them in for a new set of problems that are easier to manage and that's the thing. It's important that you always manage them. I've never once in twenty years missed a dose of my immunosuppressant medications. It doesn't matter how sick I was, even if I was throwing up. You have to take them.
My dialysis unit has several people who didn't agree. If they were feeling well, they didn't think they needed their medications anymore. They sort of took it upon themselves to practice medicine. Now they are back on dialysis.
I work with some patients who really want a transplant, but when the centers call and ask me, "Do you think this person is a good risk?" I actually, honestly have to answer: "No, I don't." I hate to do this to people, but these are the folks who never take a single pill; they don't participate in their own care whatsoever. They don't even want to listen, when I try to make recommendations about how to be healthier -- and they've already lost a kidney, in part, because they didn't take their medications. They've shown me they won't work to keep a transplanted kidney, and I think such people are a bad risk. A donated kidney is a precious resource.
There's a lot of good information out there for you, many good websites to go to, like www.diabetesinstitute.org, which is Dr. David Sutherland's website. Www.kidney.org is the website of the National Kidney Foundation and I've noticed Voice of the Diabetic has some website resources available for people as well (go to: www.nfb.org/voice.htm for the Voice on the Web.)