by Carol Eaton
My name is Carol Eaton. I live in Keene, New Hampshire, I live in New Hampshire, tucked down in the western corner of the state, next to Vermont, but I actually work for the Vermont Association for the Blind.
I got diabetes when I was 12 years old. I remember it very clearly. I had been very active, a really physical kid. I was outdoors all the time. I came from a large family, with seven kids, and my father was a type 1 diabetic. So we had a family ritual every holiday gathering. Back then it was urine testing. Every holiday, the test strip would come out, and everybody would go and test their urine.
My test tape came out green, dark green, and I flushed it down the toilet. And I came out and everyone was saying, "oh, mine was yellow. It was yellow."
And I said, "not mine, mine was green." My mother, of course, wanted to see it. And I told her I'd flushed it down the toilet. You know, I was at that age where I was probably being a little difficult. I don't think it really clicked with me, gee I'm a diabetic.
Then she told me I had to go and do it again, later, and I said that I didn't have to go. When I finally went to the bathroom again, I did the same thing --flushed it down the toilet.
Finally, after the third time, my mother made sure I realized she didn't want me to just test myself again, she wanted to see the results of it.
I remember it mostly from my father. I was really close to my dad; I can remember on Saturday mornings, him taking the glass syringe, and sterilizing it. I can remember him sharpening the needles; the whole bit, you know, because they did not have disposable syringes at that time.
In any case, what was interesting with my situation was this was a family ritual. When we had tested at Christmas time, I was fine. And it was Easter Sunday when I tested myself again. Of course, that was after having, you know, gotten into the Easter baskets some, but my blood sugar was off the roof.
Before I was diagnosed, we didn't regularly test. I did it at Christmas and then three months later did it Easter time. We didn't do it monthly, certainly. We did it maybe, three, four times a year, you know, when the family got together.
Then the strip was green, and I was obviously diabetic. I was taken to the doctor, and they immediately put me into the hospital, and that was the beginning of it. I was immediately put on insulin. Back then, it was one shot a day. Get up in the morning, take one dose of a long-lasting type insulin, Lente insulin.
There was no blood testing at home. It really was: get up, take your shot, then live your schedule according to your insulin. You made sure you ate on time-your lunch, your dinner, etc., your snacks. But I never really had any problems, not until years later when I finally started, to have kidney failure.
Throughout all of junior high and high school, and even into my college years. my father has always said, had always drilled into me that if you take good care of yourself, you won't have complications. So, when I had my complications, it really hit me by surprise.
My father had been very, concerned about complications, and was very careful about his diet, his exercise and whatnot. His greatest problem was, his low blood sugars. I saw my father go into a lot of insulin reactions.
I can remember having to help my mom get my dad to drink the glass of juice, or whatever, to bring him out of a reaction. I grew up with that. I used to pride myself on the fact that I didn't have low blood sugars.
All I know is that with my doctors visits and whatnot, everything seemed to be going just fine. It took them quite a while to actually figure out I was having kidney failure. My lab work wasn't really showing it.
After, oh, 15, 16 years of diabetes, I started having some trouble with my vision. I had been helping my sister, renovate a restaurant. I had been staining walls and wood furniture all weekend long. I wore contacts at that time, and I can remember thinking the problems I was having must have come from being around all these fumes.
So I stopped wearing the contacts for a week, and then I realized my vision was changing. I went to the doctor, but he just prescribed new glasses. The new prescription glasses did not seem to work well, and I was not happy with them. Then he started taking a closer look into the back of the eye and whatnot, and indicated I needed to see a specialist.
They hooked me up with specialist right away who just said come back in three months, and I said, "What? Wait and see if it gets better or worse?"
And his comment was, "Well, basically yes." That's all you can do. So, I immediately went home, got on the phone, and called the Joslin Clinic in Boston.
They had me come down immediately. I was there the next day. At that time, they were still doing a lot of experimental work with laser treatment, and they offered to put me into a pilot project. We knew I needed laser treatment immediately on this one eye, as there were definite signs of diabetic retinopathy. So, we just went ahead with treatment instead.
I wasn't showing any signs of impaired renal functioning, then, in June of 1983. But my vision, it kept having hemorrhages in my eyesight.
I was still urine testing. I was feeling physically okay. The big concern was the change in vision. I was still quite active, doing all types of things: camping, and skiing and traveling.
In June of '83, I got my first laser treatment. But, week after week, I kept having more hemorrhaging, and the eye doctor started asking me, "How are your kidneys?" And the doctors were not finding anything, any signs of elevated proteins or renal failure. I continued getting laser treatments then, almost weekly, and within three months, I could no longer drive. I was not legally blind; but I certainly wasn't able to drive anymore, and I certainly couldn't drive at night. I was having great difficulty with nighttime vision. By November, I was hospitalized.
Something was obviously wrong, physically, and they could not find out what it was. They were doing every test under the sun. I was in and out of the hospital repeatedly between November, and December and January, and finally, February 14th, Valentine's Day, 1984, I just went into the emergency room at the hospital. I was admitted, and after a couple of days, they told me my kidneys were starting to go. Uhm, so that was really the first sign of kidney failure. They couldn't really tell me how quickly the kidneys would fail.
So anyway, by June, I was in complete kidney failure and on dialysis, and by July of 1984, I had a kidney transplant from my oldest brother.
I had been deathly ill. There were several occasions where they didn't think I was going to make it through the night. It hit me, hit me fast and it hit me hard. I was very sick on dialysis.
I had a brand new car, so my sister would drive my car and take me to dialysis. And I'd get in the car with a towel and a bucket, because I would be sick on the way to dialysis and sick on the way home from dialysis, and then I would have one good day, and then I would be back on, you know.
I started dialysis in June. Meanwhile, my family members had been worked up for a transplant. I was very fortunate, coming from a large family. All my siblings were willing to donate. I never asked them. I never even suggested. They were the ones who decided, "Carol, this is what you need to do. We're getting tested. I'm a perfect match. I'm going to give you my kidney," and I was so sick at the time that I was pretty much, "Just tell me what to do so I don't feel this way, and you know, I''ll do whatever anyone tells me."
I was so ill, I really didn't feel in a position to be making good decisions for myself. I was worried about the danger of the transplant for my sibling's sake, more so than my own. I was so ill that by the time I went in for surgery, I didn't really care if I came out alive or not. I just didn't want to come out feeling the way I was feeling. I just wanted that to end. I had my kidney transplant on July 30th of 1984.
It was unbelievable. I never dreamed I would feel as well again in my life. I never really realized that from a physical transplant, I could go back to feeling like I used to. I had heard so much, and was so concerned about the immuno-suppressants, the anti-rejection drugs; it was just such unknown territory, for me, to go through a transplant, and take on somebody else's organ, and then be on the anti-rejection drugs, I was filled with all types of anticipation about what that would mean for me.
Because my brother's kidney was such a perfect match for me, and it began working immediately, I didn't need a lot of complex immuno-suppressive medications. The doctors told me as soon as they got it connected, they could tell it was working, and both my brother and I ended up leaving the hospital a week early. He was in for five days -- but they'd told him that he'd be in for two weeks. They told me I'd be in for three weeks, and I left in less than two weeks. So we both responded very well, and of course I was young. I was what, 27, I think, 28.
My age did make a difference, because we responded very well, and for me it was amazingly different because the day after surgery, when I woke up, I was immediately aware how much better I felt. Even though I just undergone this major surgery, and had this big incision, I did not feel nauseous.
The next ten years were extremely good. I had above normal creatinine functioning. Kidney functioning was excellent. I do remember after having had the transplant, talking with the doctors about how long the transplant would last. And they said there's no real way of knowing for certain, but, it could be the diabetes that took my first kidney could take my second kidney, my transplanted kidney. If that were the case, then in about 15 years, I might be looking at kidney failure again.
Five years out I was doing fine. Ten years out I was doing fine. Thirteen years out I was doing fine. But in my fourteenth year, my creatinine started to climb. And I raised questions and concerns, during routine lab work, and they just said well, that was normal and not to worry about it. But then it started to really climb and they were still telling me not to worry about it. It was normal, but then I started to feel ill. And I started recognizing the symptoms having been through kidney failure before, I was very aware of the early signs, and when I started retaining fluid, and they're telling me, well it's been a humid summer. I said you know, we've had a lot of humid summers in the last 14 years.
And I had been asking them, every year after my transplant, about pancreas transplants, because I knew, right after my kidney transplant, that I really wanted to get rid of the diabetes. I did not want to lose this perfect kidney I had.
And they told me to wait. They said they needed to make a lot more progress with it. So they said ask again in five years. I remembered that, and five years later I asked, and they said no, not yet, and told me to ask in five years again. So now it's at the ten-year point, and I asked about a pancreas transplant. Right up until the end, when I was now facing kidney failure again, and they told me I probably had three years with my kidneys, and so there wasn't really anything that they could do, or would do, until I went into kidney failure.
I was dealing with this new doctor, who had been following me for years, but always as a healthy post-transplant patient. I quickly reminded him of my history, when I was first told my kidneys were going, were starting to fail, and it would be one to five years, that within less than six months, I was in complete renal failure, and I had gone legally blind. Because my vision continued to worsen, by the time I had my transplant in 1984, I just had bare light perception. Over the course of the next year, I got continual improvement in my vision. Again, I was still legally blind, I improved to about 20/400 vision in one eye, and that was, the amount of vision I had.
I think I talked to the instructors at Carroll Center for the Blind, before, but I was just too sick. I couldn't go to the Carroll Center while I was awaiting the kidney transplant. I went to the Carroll Center, starting in January of 1985, and was there for four months. And, I would say that type of rehab, when you are that young and have lost so much vision, fairly quickly, you just need so much rehab, that for me, getting it in a residential setting, such as that, was the best thing for me. I mean, here I am, I'm a rehab teacher in an agency that provides itinerant services, but there's just no way, the needs were so great.
And the mobility needs, to be able to work your way up to a three-hour mobility lesson and to get mobility every day of the week. You just don't get that with itinerant service
A residential setting is not appropriate for some, and I realize that. But for me, that was a life saver, a turning point for me.
So now I'm, you know ... it's February. It's my birthday, so I start at the Carroll Center still at the age of 27, but by the time I finished, I was 28, and I enrolled in grad school, right after I finished the Carroll Center. I went to grad school to get my degree in rehab teaching for the blind.
I was still dealing with the Joslin, being followed by the Joslin, doing blood testing, I mean, it was a very strict regimen. I tested five, six times a day, and was taking shots accordingly. I was taking the Humalog, the fast-acting insulin, along with a slow-acting ultralente, I believe, because they didn't have Lantus at that time.
When I, with this intensive insulin therapy regime, found my kidneys are going, I really got very discouraged, and I thought, you know what, it really doesn't matter how tight my control is. The diabetes is going to do what the diabetes is going to do. I was shocked that my kidneys were going and it was pretty much like clockwork. They had said in about 15 years, and that was about it was. About 15 years later, my transplanted kidney was starting to fail. When I talked to the Joslin, and they, again, were not willing to do a pancreas transplant; they did not want to talk about intervening with the kidney, and basically, they indicated I would need to wait until my kidneys failed, I just wasn't willing to wait. I just thought, I have too much to lose here. I went through it once. I don't want to go through it again. I've got donors who are willing, and available. I've already lost all the vision in one eye, only had partial vision left in one eye, and I didn't want to lose the rest of the vision I had, because what happened in that course of that year, after the transplant, while I was in grad school, my vision did continue to improve. And that's where I went from having bare light perception, to frequently traveling, without a cane. I mean my vision was ok, in a familiar environment; I didn't bother with a cane anymore.
So, at that point, I decided to contact Minnesota. And I spoke with Dr. Sutherland. So, sure enough, the story there was completely different.
He said: "Time is of the essence. You need to come quickly so we might be able to save this kidney."
I flew out there, went for a week-long evaluation. They did a biopsy of the kidney. They said: "Yes, it is not rejection. It is diabetic, diabetic changes are occurring, and therefore, we would like to get you on a pancreas transplant, but you are going to need a kidney transplant, because you probably know this regime."
With a pancreas transplant, the medication they want to put you on can do some damage to the kidney. It's really hard on the kidney. Now, for most people, who are getting kidney/pancreas transplants right off the bat, the little bit of damage the medication does to a high functioning kidney is not going to be problematic. But for me, my kidney was already starting to show diabetic changes.
And he said, "we don't often deal with people in this situation." I was going to be a first. "But," he said, "so we'll just have to monitor it closely." So, anyway, I went through my evaluation, a very thorough evaluation. Wonderful. They actually found a heart blockage, which they did not expect to find based on my physical activity and my otherwise general state of good health.
So they did an angioplasty, and ended up putting a stent in, which was a shocker. They said I was basically a heart attack waiting to happen, with no real indications of it. Now in retrospect we know some of what I was feeling, what I thought to be the kidneys starting to fail, actually was a blockage to the heart causing some of the fatigue and the difficulty with walking up a flight of stairs.
So, when I came back to Boston, when I came back home and I'm on the waiting list, then immediately the Joslin doctors said they could do the transplant. They would do the transplant. I said, "not at this point."
They had said, Medicare, you know, you got to wait for your kidney to fail. You know, it just was ridiculous back then. But anyway, I knew a little bit more, I was a little bit wiser, and little older and I just decided I wasn't going to go through kidney failure again. So at that point, I just stopped dealing with Joslin and started dealing with the Minnesota team, and within three months, I did get the call. They had a pancreas for me. They told me the average waiting time was three months. It could be a week. You know, it could happen within a week, but the average waiting time was three months and my call came three months to the day.
So, I went and got my pancreas transplant. Now keep in mind, they had told me that because of the organ I was going to need from a cadaver, a non-blood related organ, I was going to need stronger medication and that would be hard on the kidney. So, we had, at the same time while I was waiting for a pancreas, been working up family members. And my oldest sister had decided to give me her kidney. So, we actually had a date scheduled for the kidney transplant; but the pancreas came, so we went, I went and got the pancreas, and then we postponed the kidney transplant. They wanted to wait three months after the pancreas to do the kidney transplant.
I got my pancreas in March and then I got my second kidney on July 8th. So the first one was July 30th of 1984, and my second one was July 8th of 1999.
My biggest problem with the pancreas transplant was medication. Again, too much medication. They tried to put me on, not cyclosporine, Cellsept. Prograf and Cellsept, and I could not tolerate the Cellsept. They would put me on, take me off for a month; as soon as all my numbers would fall back into place, they'd put me back on. Finally, after doing this for about nine months, I said I just can't keep doing this. I can't. It was really making me nauseous. I'd end up dehydrated, have to go into the hospital, and so we didn't really want to do that, so finally they just stopped the Cellsept.
A kidney transplant is amazing because that gives you your physical health and stamina. I mean, you feel well. But, a pancreas transplant really gives you your life back. Not that you're not living a full life with diabetes, because you are. But for me, never really having lived my life as an adult free of diabetes ..., I mean I was a child when I got diabetes.
I had no idea what it was like to really just live a spontaneous lifestyle -- not have to worry about: do I have the snack? Do I have the insulin? Do I have a syringe? Do I have the blood test strips?
Refraining from sweets was not the biggest problem for me. The low blood sugars were a problem for me. My thing was I always felt like I'm just eating, I eat because I have to eat. Not necessarily because I want to eat. I eat because I have to feed that insulin. I can't let the insulin take over here. I gotta keep in control.
It really came by surprise that five years later, I started to go through a little bit of rejection of the pancreas. What happened was, I did have the kidney transplant. I had the pancreas transplant. Everything was working beautifully. My bigger concern had always been the kidney, rather than the pancreas. The pancreas, everything was perfect and beautiful, and everything was great.
The kidney functioning, the creatinine never really got as low as we would have liked. So, for the last five years, my creatinine level, which, as you know, is indicative of your kidney functioning, was always slightly above the normal range, and they had pretty much said, well that's going to be your level. You know, you'll never be as low as you used to be, so I was accepting that. When I reached the five-year mark of my pancreas transplant, never having had any problems with it whatsoever, I was told first of all, that I could reduce the frequency of my lab work; I could just have lab work done every six months. So, okay, that's great. But, further into the discussion, we were talking again about my creatinine level, and it was decided we could afford to reduce my Prograf by one milligram.
Well, one milligram was one third of my medication. I had been taking two milligrams in the morning and one milligram at night -- and they cut me back to one milligram in the morning and one milligram at night. Which was fine, and would have been fine; but they didn't mention it, and I didn't stop to think about it, we still kept me doing the lab work at six months. When I went, six months later, to do my lab work, we found the pancreas was not functioning up to par, and that's when it was determined I might be rejecting. I'm quite certain the reason for the rejection was the reduction of the medication, and not monitoring it more closely. And that is just a sorry mistake. I kick myself that I didn't think about it. I don't really blame Minnesota. They've been so good to me. They are so capable. I think it was just an oversight. It probably never should have happened, but it did, and fortunately we caught it soon enough.
And, I flew out to Minnesota right away, spent a week in the hospital. Went through IV treatment there to kind of wipe out my immune system, and basically I'm back now. For all we know, my pancreas really could function at full capacity now, but they don't want to overtax it. So I'm taking nine units of Lantus every morning. I started out at 20, and then they dropped it to 15. By the time I left the hospital, I was down to 12, I think. And since I came home from the hospital, came home from Minnesota, we dropped it down, based on my blood sugars, I was having low blood sugars in the morning, so I now take nine units, and they want me to do that for about two or three more months, just to give the pancreas a rest.
I will share this, because this is one thing that got me. What's great about Minnesota, they give you a list of names of people who have had successful transplants, unsuccessful ones, blood related, not blood related, etc., pancreas, pancreas alone, pancreas with kidney. I called a lot of those people, and talked to those people. It helped, as I was a little nervous about the pancreas transplant.
But the one quote I heard, I immediately wrote it down. I can't tell you where I heard it or anything. I just know I heard this, which was: "Any risk worth taking bears the chance for substantial reward." I used to just repeat that all the time. Any risk worth taking bears the chance for substantial reward. I thought, you know what? It might be a little risky, and I really, truly believed it was the right thing for me. What I always say to people is, you just owe it to yourself to check it out, to find out about it. I would never say every diabetic should do this.
For me personally, it was the best thing I ever did. I was having way too many complications with the diabetes. I was a well controlled diabetic, who took my diabetes seriously, and despite that, could see what the diabetes was taking from me and doing to me. My husband was convinced I was going to end up with an amputation if I didn't do something. As it turned out, I probably would have ended up with a heart attack. But for me it definitely was the right thing, and I think just everybody owes it to themselves to stay up to date. Be aware of what's out there, really ask questions, and keep yourself educated, because you can't just rely on the doctor.
You, the patient, are an important part of the team. You really need to have a doctor you feel confident with and who you can converse with about your disease. Diabetes is not a disease you can just have the doctor take care of and then you forget about it.