Susan Rember was eight years old when she was diagnosed with type 1 diabetes in 1957. At the time, diabetics used glass syringes, tested their urine for sugar levels and were told they could never live a normal life. But Rember was mostly free from major complications for 50 years, until she suffered a heart attack in 2005. She had a quintuple by-pass, but when three of the grafted vessels immediately failed, the Denver-based artist began exploring the possibility of an islet transplant. In 2007, she got new islets through a clinical study conducted by the UCSF Pancreas and Islet Transplant Program. As of 2013, her transplanted islets were going strong.
How well controlled was your diabetes before the transplant?
I've always been very self-motivated as far as taking care of myself. I checked my sugars probably six times a day and was always thinking about them, 24-7. I had an insulin pump for 11 years. Until the heart attack, I didn't seem to have any complications; my kidneys were fairly stable. I'd been diabetic for so long that it was difficult, impossible to control my sugar levels. My body didn't produce any insulin so my sugars were very low or very high. I was mentally and emotionally exhausted from trying to save my own life.
Did you have hypoglycemic episodes?
Yes, some terrible ones. Sometimes I'd wake up and find myself sitting on the kitchen floor eating a bowl of cereal with about a cup of sugar on it. I wasn't even aware I'd gotten up and gone into the kitchen.
Was your heart attack a result of your diabetes?
Yes. Physically, I'm a typical type 1 diabetic: I'm not overweight. I exercise and work out regularly. So I didn't really understand why I was feeling chest pain and fatigue. When I finally went to get it checked, I was told I had already had a heart attack. In fact, I was pretty critical at that time and was rushed into the surgery for a bypass. After that I was excited to find out about islet transplantation.
Did your doctor suggest it to you?
My endocrinologist never mentioned it and my primary care doctor at the time said I was putting way too much into it, that there was no cure for diabetes. But I knew that this was the right thing for me. I heard from somebody in my family about a clinic in Minnesota that was doing transplants, but they turned me down. Then I learned that UCSF was doing a clinical study on islet transplants, so I called. Joan McElroy [a nurse coordinator at UCSF's transplant service] was absolutely wonderful. She sent me the necessary papers and after I sent them back, I came out and did all the testing and was approved for a transplant. Then I had to wait a year for a donor.
Was it hard to wait?
Yeah that was very hard. But I think the delay was partly because the transplant doctors were fine-tuning their ability to isolate and preserve the islet cells from donor pancreases. Finally they called me and I flew out the same day. It was crazy. I accidentally left my driver's license at home in another purse. My mother-in-law talked the people at the airport into letting me on the flight. I just had to get on that flight. When I got to San Francisco, I got into a shuttle van and told the driver, "I need to get to the hospital at UCSF. They're waiting on a transplant there." So he dropped me off first. It was really cool. The other passengers all said, "Take her first." The surgery was done on Sept. 17, 2007.
What was the procedure itself like?
They gave me a mild sedative [and transplant surgeon Dr. Andrew Posselt inserted an IV containing the donor islet cells through my abdomen into the liver.] They had done several x-rays so they knew exactly where in the liver the cells needed to go.] You could watch the cells coming down; they glittered like gold. I think they're mixed with a little bit of metal so the doctors can keep track of them. It was just a miracle to see those cells coming into me.
Did you continue to need insulin after the transplant?
There were a couple of days that I was being given one unit, but even that was too much. I had been taking probably 30 units a day on average. Within a couple of days I was insulin-free.
What was that like?
It was really scary at first. And, for the first time in my life I experienced hunger pains. Before I never would get hungry. I would have low sugars that made me crave food, but it wasn't the same.
How long were you in the hospital?
I spent about five days in the hospital and then continued to stay in the city for another two weeks, so they could follow me. Then for follow-up, they wanted me back in a month, and then every three months for about two years. I was part of a clinical trial that was funded by the Juvenile Diabetes Research Foundation.
How has the transplant changed your life?
I have energy for all kinds of things I would never have been able to do before. I remodeled an 1887 house — it took me seven months and I had probably 30 different people I hired for the project. I couldn't have done that before. I bike a lot. Last summer I did half of the Coeur d'Alene trail across [the panhandle] of Idaho. Now I don't have to worry about my sugars; I can eat whatever I want. That's really incredible.
Are your blood sugars stable?
Yes my last hemoglobin A1C was 5.5. I found early on that my sugars do better if I eat a little bit of sugar, something to get the islets to work. Whereas If I eat a low carb meal like beans, then my sugars stay a little higher and afterwards I’ll have a piece of fruit for dessert. But basically I just eat anything I want to eat. Though I've found I don't really like fruits and vegetables as much — and they were a mainstay of my diet. I still eat them.
Why don't you like them?
I don't know. Maybe it has something to do with my donor.
Have there been any complications?
I've done really well. I really haven't had any problems.
How are you tolerating the immunosuppressant drugs you have to take?
Occasionally I get diarrhea. But I have a medication that will control it. The drugs can also cause sores in the mouth, but I take lysine to control that. Fortunately, my husband's insurance pays for all the drugs, since it's over $1,500 a month.
As someone who's more than five years out with no complications, you are a real success story.
I am. And every day I am grateful for the transplant and so grateful to my donor. They don't know if the islets are reproducing in the liver or reproducing in the pancreas. But I hope they last forever.
Interviewed by Susan Freinkel.
Photo courtesy of Susie Rember.