From the Editor: When I interviewed Vanesa Sutherland, I found her to be extremely knowlegable about pancreas and kidney transplant. Mrs. Sutherland has experienced some of the complications of diabetes, and will explain her organ transplant. Here's what she says:
Every time I consider my experience with diabetes, I see two open ends of my life, and a perpetual question. Neither the beginning (the diagnosis), or the end (the pancreas transplant) are closed points. As time goes by, and medicine finds more answers and explanation for both diabetes and transplantation, I am able to look in a different way at the same facts. As for the perpetual question, "Did you really take care properly of your diabetes/transplant?" __ I think I did, many times; it did escape from my hands at other times, but I always tried.
We were living in Mexico City at the time I was diagnosed. It did not come as a total surprise; a year before, when we were in Colorado, my blood sugar test came back abnormally low. Now, it was ostensibly high __ but as I still had positive c_peptide levels, the physician put me on oral hypoglycemic medication. A year after that, at age five, I was in a pediatric hospital in Mexico, dehydrated, and in a typical diabetic coma. That year, 1969, I started insulin. With no known family history of diabetes type 1, and no understanding of autoimmunity or the possible triggers of autoimmunity, my parents and younger brother and sister became a "diabetic family."
It was not easy growing up with diabetes. I wanted to be like my peers; but many of my teachers were aware of the diabetes and kept a good eye on me, to the point that in elementary school, my physical education teacher kept me from doing sports, to avoid hypoglycemia. Understandably, I was not very thrilled to share that I was diabetic, for fear I'd be treated differently, or prevented from the activities everybody else had access to. So diabetes became something I tried to keep to myself. But it was impossible; everybody around me knew. I am so happy things are more open now, and people in general have a better understanding.
We moved to Puerto Rico, and adolescence came, with its pulsating hormones making diabetes harder to control. Lows and highs were common, and the frustration of trying to stay in the normal glucose range I tried to offset with excelling as a student and a friend, seeking the company of people with whom I did not need to preamble as a diabetic. So that was my perception.
Back in Mexico, I went to college, did my graduate degree and work, with more ups than downs with respect to diabetes. I followed the changes in dietary and insulin treatment proposed by many endocrinologists, from the typical diabetic diet to eating normally, to adjusting my insulin, to treating complex carbohydrates as a "privileged" food; from urine sugar tests to several blood tests, to just two blood tests; from one daily insulin injection to one of NPH adjusted by R insulin, or just R with meals.
For several years, every time I injected myself, part of the insulin (who knows how much?) went out of my skin. Later on I was told that I had developed antibodies to the beef and pork from which those insulins derived.
I have in the back of my mind a faint impression of preparing for a test, and hearing in the news about pancreas transplantation __ while the University of Minnesota's aerial profile showed up on the TV, and a reporter emphasized the shortcomings of such a big surgery and a life on immunosuppression. I recalled thinking: "I am not there yet, and they are not yet there, either." Little I knew that some years after, I would need the University Hospital, need the publicized procedure, and I would call Minnesota home.
Less than nine years later, I found myself flying to New York, to meet my mother, and to have a bilateral vitrectomy. Things did not go as expected; I lost depth perception and a great deal of visual acuity. With time and eye exercises, I have gained some back, but some is lost.
At age 27 I was back with my very supportive parents in Puerto Rico, after quitting a wonderful, fulfilling job, my apartment, my friends and the boyfriend I thought I would marry someday. I spent long hours trying to see better, trying to read, making a word of fragmented letters. My parents and family helped me, and my ability to read was regained. I lost some vision but I still work on my standard computer and enjoy reading and traveling .
Five years after my vision problems, my kidneys failed. I found myself on dialysis, desperately trying to control my blood sugar. Useless were the several graphs and tables depicting food consumed, insulin taken and blood sugars; the endocrinologist just shook her head and told me again, "I do not know what to do with you." Not that I had not heard that before, but now I was on dialysis and my idea of having some worthwhile future was vanishing despite my best efforts, despite my best will. Not knowing that in spite of timely strict control some people are more susceptible than others to develop diabetic complications, I felt guilty and ashamed, not comprehending how other diabetics, who behave less carefully, walk through life practically unscathed.
Then a transplant surgeon who had trained at the University of Minnesota told me I should think about having a pancreas and kidney transplant. He gave me about 15 or 20 names of transplant centers throughout the nation. I wrote to every one of them, read all the information received and decided Minnesota was the best option.
In May 1995, my parents and I came to the University of Minnesota to see (at that time) Dr. David Sutherland (today I lovingly call him Dave; he will not like it another way, but that is now). On August first, the same year, my mother and I were in the preparation room just about to have surgery. She, lovely and beautiful as she is, offered to me not just one of her kidneys, but also half a pancreas. In that moment I reiterate how much she loves all of us, and that she has been my closest partner in diabetes, and in all the complications I had. Today, she is in perfect health, and strong and beautiful as ever.
All the organs worked right away, but I got a disease of the kidney induced by one of the drugs, and my stay in the hospital was protracted. I think Dr. Sutherland got tired of having the same feature in the ward, and asked me to write a computer program for internal organ allocation. After that, which I finished out of the hospital, several other projects followed, for the Diabetes Institute for Immunology and Transplantation, which he directs at the University of Minnesota. Among those projects, and many other ones we have today, we got married (to each other).
Finally that kidney failed, due to the harshness of the drug_induced disease and other factors. I spent some time on dialysis, as because of my high percentage of antibodies (due to a failed transplant and transfusions) I could not get a kidney from the National Waiting List.
Then my aunt (my mother's sister), with her endless generosity and care for her family, gave me one of her kidneys. During the ordeal the half_pancreas my mother donated to me has survived and kept me off insulin.
As you can see by now, I have a lot of people to thank; some I have mentioned, others still remain in my pen (read keyboard) and heart, nevertheless, the idea that we people need to support and get support from each other has been a determinant one in my life. Things have changed in the Fairview_University Transplant Center; they are getting better, the people are very knowledgeable but overall just good people.
Sometimes when peoples' health has deteriorated, for whatever reason, they get sad and depressed, because they feel they cannot get out of the quagmire. They feel like they're in a labyrinth. I have learned there is always a way to get out of that feeling. The participatory part, by the patient, is really important, to look for other options and ask yourself if a particular step is for you.
There is a lot of information available, to help you. We, who suffer such a complex condition, should try to obtain it. Just going to one doctor, or one center, is not enough. Get second opinions. Use the Internet. We need to educate ourselves. By the way, our transplant center has a website for those interested in pancreas or islet transplantation: (www.diabetesinstitute.org). It is an extremely good website, very valuable.
I have a pancreas transplant, actually half a pancreas, from a living donor. Not many people have half. The pancreas actually has two functions. One is to help the intestine with digestion; the other function is insulin production. The beta cells, in the islets of Langerhans scattered throughout the pancreas, are the ones responsible for insulin production. The islets, interspersed in the pancreas, accounts for 2% of its total weight.
In the 1960s and '70s, surgeons worked on transplanting just the islets, but also realized, at the time, that a complete pancreas transplant presented less obstacles, and they focused on making it work. Islet transplantation was a less invasive procedure for the patient; but a lot of problems in separating the islets from the rest of the pancreas needed to be solved. In addition, the immunosuppression regime, the series of drugs available to keep the body from rejecting the transplant, were too harsh for the survival of the new islets by themselves; in fact, they were, and some (still used today), are diabetogenic.
Nevertheless people kept working with the islets. A few, like Dr. David Sutherland, worked on both pancreas and islet transplantation. In the early '90s, the islet transplant outcomes at Minnesota were quite successful in some cases, but some of the promising immunosuppressive drugs used were later withdrawn from the market or, like dioxyspergualin, licensed by the FDA.
From the mid_90s to now, Dr. David Sutherland and Dr. Bernard Hering, at the University of Minnesota, worked on the clinical side of islet transplantation. Which drugs should be used? In what amounts? Is it possible to attain tolerance, so drugs are not needed? They studied ways to inject islets into the portal vein or other sites. They have tried to use pork islets (xenotransplantation) to make up for the shortage of human islet cells. Successful use of animal islet cells could open transplantation as an option to almost every individual afflicted who wants to trade in diabetes for immunosuppression.
As of right now, there are de facto restrictions on islet cell transplantation.
One is insurance coverage; another is that the FDA is very cautious, especially
with biological products. However, for diabetics whose kidneys have failed,
Medicare is preparing to pay for an islet as it now does for a pancreas transplant.
Some insurances cover pancreas transplant alone in diabetics whose kidneys are
functioning. I have no doubt that very soon after clinical trials show islet
transplants to be efficacious and safe, the insurance situation will change.
We have a present. We really do have a future.