Bay Area native Kim Mendes has lived most of her life with Type 1 diabetes and the disease has taken a heavy toll on her body, causing a host of medical problems including peripheral neuropathy, heart disease, kidney disease and a compromised immune system. She got an islet transplant in 2010 and has been insulin free ever since.
How long have you had diabetes?
This is my 40th year as a Type 1 diabetic. I was seven years old when I was diagnosed. I had fallen into a diabetic coma and insulin brought me out. From that moment on I was completely insulin dependent. Back in 1973 the technology for managing diabetes was not at all what it is today. I was one of the very first people from that hospital to receive disposable needles when I went home.
What kinds of side effects did you suffer because of your diabetes?
My feet started to go numb and I developed high blood pressure when I was a teenager. Around the time I was 30, my kidneys began showing some signs of damage and the specialist basically said 'We're going to just watch your kidneys decline until you need a transplant.' That was a very distressful thing to hear (By 2008, Kim was scheduled to have a kidney transplant, using a kidney from a live donor). As part of the work-up for the transplant, I had to have a heart catheterization test; it shows how well the blood runs through your veins and arteries. Unfortunately, it showed I was 90 percent blocked in two arteries and 60 percent blocked in another. That was the first we knew of any heart disease — it was shocking to my doctors since I am thin and active as a dancer. They told me I needed an emergency triple bypass, which I had two days later. And then two months later I was eligible to undergo the kidney transplant.
When did you start thinking about having an islet transplant?
When I was being worked up for the kidney transplant surgery, we discussed several options. One was to forego a living donor kidney transplant and go on the waitlist for a simultaneous kidney-pancreas transplant. Another was to have the living donor kidney transplant and then go for a pancreas later on or apply to the islet transplant program. By then, I had been through a couple of major surgeries and I did not want to undergo another. Even though islet transplants don't have quite as high a success rate as pancreas transplants in getting someone off of insulin, the success rate is still quite high. And it's a less invasive procedure. I really needed something gentler for me at that time. Also I wanted to be a part of the development of this transplant technology. I wanted to do more than just receive a cure for myself — I wanted to do something bigger to help others. Something in my heart really felt like I'm supposed to do this.
Was it hard to get accepted for a transplant?
I had to apply to [the UCSF research] program and meet their very stringent requirements. But Dr. Peter Stock, Dr. Andrew Posselt and their team told me I was a probably an ideal candidate. I got my medical work-up done very quickly. I was listed on the transplant waitlist for two or three weeks and then I received a call that a suitable pancreas (where islets could be extracted from) was available to me.
In the past researchers didn't want people in the studies whose health was too complicated or who had had kidney transplants. But now the research is opening up to include diabetics who have problems besides hypoglycemia unawareness. That's a very good thing. It's good to allow us into the studies. We've been all the way down the road with diabetes — we're the end stage people so we are very motivated and we don't have much to lose.
Was hypoglycemia unawareness an issue for you?
Yes and the way it looked for me was that in the middle of the night when my blood sugar was dropping I would not wake up until it was so low that it was an emergency. Normally you sense certain symptoms — your heart starts racing, you sweat, you feel an alarm in your head. But I stopped sweating. I couldn't feel the alarm in my head and my heart was only racing a little. I wouldn't wake up until my sugar was at 30 or 40. That's a pretty high-risk situation.
What was the transplant itself like?
I went into the hospital on a Tuesday and I received the islets on a Thursday. The two days before the transplant were for starting a five-day course of Thymoglobulin which is basically an immune suppressant.The procedure itself was very short — probably 20 minutes, maybe 30 minutes, if you count them giving you a little anesthesia. You stay awake and you get to watch the islets fall down the IV tube and go into your body. The room was full of very excited people — lots of docs and researchers with big smiles on their faces. It was a very inspiring place to be. I spent a few more days in the hospital. Once they get you off IV insulin and onto injected insulin you get to go home. But you're very closely monitored and in contact with the doctors as you’re trailing off your insulin. Thirty days into it I took my last insulin shot.
How did that feel?
That was really something to get used to. In the first three to four weeks I was off insulin, I'd have to tell myself, 'You just ate something Kim, but you don't have to take a shot.' Sometimes I would startle and think, 'Oh my goodness I forgot to take a shot! When did I take the last shot?' That trigger in your mind does not go away very fast. But it's gone now. I haven't taken an insulin shot since December of 2010.
How has it changed your life?
The biggest thing is I can turn off the alarm clock in my head that told me every hour, every two hours, even every half an hour that I needed to check where my metabolism is and see if it was time to test or time to take a shot. That clock is 90 percent turned off now and that feels like a tremendous weight has been lifted off of me. Now I'm able to fall asleep without having an anxiety attack that I might get hypoglycemic. I'm a dancer with the Shahrzad Dance Company and when I was on insulin I would have to test my blood sugar at least three times in the hour before I went on stage to make sure it was correct at the moment I stepped on stage. It didn't always work. Now I'm like the other dancers. I eat a few hours before the show, stretch, put my makeup on and prepare. And then I get out there and dance. My energy is much better and so is my ability to focus on what I'm doing, rather than focusing on my diabetes. That's really huge to my quality of life. I would do the islet transplant again in a minute.
You might have to, right?
Any transplant is not forever. A pancreas lasts, I think, on average maybe 10 years. The last I heard, the best case scenario for islet transplant recipients who came off insulin completely is five years and running. So far, my data resembles those whose islets have lasted the longest. So I'm very optimistic that I have a future with these islets and that I won't need more for a long time.
Interviewed by freelance writer Susan Freinkel.
Photo courtesy of Kim Mendes.