I first heard about islet cell transplants to treat type 1 diabetes in 2000 when Dr. James Shapiro and his colleagues at the University of Alberta presented a breakthrough report describing what became known as the Edmonton protocol. They described seven consecutive participants in their research program who went without insulin injections for at least four months following one, two, or three islet infusions. The Edmonton protocol differed from the previous attempts at islet transplant in a number of ways: the islet cells were extracted from the donor pancreas with a new enzyme mixture that did not injure them; more than one procedure was performed on each patient using two or three different donors; and the Edmonton protocol used a new combination of immunosuppressive drugs. I remember remarking to friends that “this might really be it!” I followed the results of these patients for years, never dreaming that I, a person who had been living with type 1 diabetes for 25 years, would become an islet cell recipient myself.
I was diagnosed with diabetes at the age of 24. It was a complete shock. I didn’t know anyone who had diabetes. The only knowledge that I had of the disease was what I had learned in my training as a medical technologist. That knowledge was useful in understanding lab tests, but I had nothing to help me cope with the lifestyle adjustments that were necessary. My diabetes care was difficult. I tried to improve it with new technologies as they became available. An insulin pump, a continuous glucose monitor, and the drug Symlin all helped somewhat. I was very serious about both my diet and exercise. But none of these could control my blood sugars. I couldn’t to achieve any consistency or predictability.
After 25 years of battling diabetes, I began to worry that my body would lose the fight sooner rather than later. I was showing some retinopathy and was suffering more and more from hypoglycemia unawareness. My problems with diabetes were creeping deeper into my life and even into my job, which required a high level of concentration. Emotionally, I was transitioning from feeling frustrated to being completely discouraged, even hopeless.
In the summer of 2007, I happened to read a story about a clinical trial involving islet cell transplants at the University of Minnesota. Recalling the Edmonton protocol, I immediately filled out the online application. A few days later, I received a call from the study recruiter at the University of Minnesota who asked several questions to determine if I suffered from hypoglycemia unawareness. At first, I wasn’t even sure what she was referring to. It had been so long since I had felt the shaking and sweating that used to accompany my low blood sugars levels, I had all but forgotten that part of the disease. Next, I received forms to distribute to all of my doctors. These were to assess my general health and to demonstrate that my diabetes was severe enough to warrant the risks of the procedure, but that I was still healthy enough to handle the possible challenges. My endocrinologist was asked to state that I was doing all that I could to manage my diabetes, but achieving little success. A C-peptide test of zero, confirmed that I had no beta cell function.
After reading the inclusion and exclusion criteria , I felt confident that I was a good candidate for the study, but decided to increase my chances by applying to three other transplant centers as well. They all had similar research protocols and requirements. In the end, they all wanted me. After reading all that I could find on each center, I decided to enroll in the trial at University of Minnesota (now the Schulze Diabetes Institute), led by Dr. Bernhard Hering.
My mother and I drove from Ohio to Minneapolis in December through a blizzard for my screening test. Thinking back, it was a crazy thing to do. But I was determined and sure that I needed to do it. The screening tests went well and I was put on the transplant list. I felt very relieved to have met all of the qualifications to participate in this study and was so excited about the opportunity.
Six months later, I got a phone call. A pancreas was available for me. Right away my husband, Gary, and I left for Minnesota. During the drive I thought about the risks of immunosuppression and the possible complications I would face. Despite this, I still felt confident I was doing the right thing. I was more excited than afraid. We were almost to Chicago when I got another call. The transplant team hadn’t been able to harvest enough islets from the donor pancreas for my transplant.
On the long and quiet drive home, it occurred to me that all I felt was disappointment. There were no feelings of relief at all.
I got the call on July 19, 2008. This time, the transplant team was able to obtain the required amount of islets from the donor pancreas. Two days later I underwent a minor procedure to insert the donor islets into my portal vein. From there, the islets were carried to my liver. The procedure took about 90 minutes and disappointingly, I slept through all of it. I woke when I heard someone say that it was over. I began to thank everyone in the room.
Transplanted islets begin to function immediately, but supplemental insulin injections are given at first to allow the islets to acclimate and grow strong. As the islets increase in strength, insulin is gradually reduced until – ideally- it is no longer necessary. In my case, this required two months. The study protocol allows for up to three islet transplants if necessary, but probably due in part to my small stature, I needed only one transplant to become insulin free.
It was exhilarating to watch my insulin requirements and my worries decrease. I felt a freedom that I had forgotten existed. My energy level was (and still is) higher than it had been in years. It became a challenge to see how far I could push my limits and it seemed endless. My lifelong enjoyment of physical activities like golf, biking, walking and kayaking were no longer interrupted or hindered by sudden events of low blood sugar. I didn’t have to leave my workstation because I could no longer trust myself to report results accurately. My whole body felt strong and efficient. After living in terror of hypoglycemia for 25 years, I quit carrying snacks with me. I really didn’t need to worry about going too low. I could even skip a snack or delay a meal. I no longer had to get up at night to test or eat. Not having to eat when I don’t want to remains one of the things that I appreciate the most about my new islets.
The downside to this was the immunosuppression. Despite the fact that my new islets were working perfectly, and I was feeling so well, because of the side effects of the immunosuppressant drugs, I wasn’t at all problem-free. One drug caused stomach discomfort for almost a year. I’ve been through a few infections, mouth sores, colonitis, and am currently watching my kidney function tests closely. I take about 30 pills every day.
Just after the two year anniversary of my insulin independence, my blood sugars began drifting upwards and I needed to start taking some insulin. I was disappointed, to say the least, and I was extremely worried that I would continue to need more and more insulin until I was back to my pre-transplant levels. Now, when I think back to my “old self,” it’s painful to realize that that person is really me. This “new life” is the reality I want. I don’t care about the needles and strict diet. It’s the freedom and feelings of wellness that I can’t stand the thought of losing again. I’m glad to say that my worst fears have not realized. I’ve been very stable this last year. I take about 11 units of insulin a day and maintain good control. It has even been somewhat rewarding to find that I can successfully manage my blood sugars with insulin. That never seemed to be the case before.
Since my transplant, I’ve become much more motivated to reach out to other diabetics. I live in a very small town and until I attempted to form a group for a JDRF Promise meeting I didn’t even realize that I don’t know any adults living with type 1 diabetes. I write a blog that has chronicled my transplant experience from its beginning, and this has enabled me to interact with other diabetics and their families. I have become active in fundraising for JDRF and as a government relations advocate. I’m also attempting to learn how to train dogs as diabetes alert dogs. These outlets have been very rewarding and have opened new doors. I’ve had the opportunity to connect with other islet cell recipients on a designated Facebook page. This group of people has become very important to me. There are so few of us and it is comforting to be able to share our amazing experiences with those people who can truly understand.
I feel that having lived with diabetes for so long and then having the chance to live without it, has given me a unique perspective. It has also evoked some strong feelings about this disease and the roles that people are forced to play within its confines. When I meet children with diabetes and their parents, sometimes I feel as if I have somehow cheated fate and escaped from my still struggling group. Sometimes, I find it difficult to read the blogs written by type 1s who are dealing with the daily challenges that I remember so well. I want so badly for the rest of my group to join me here.
I understand that this is not considered to be the cure. But, it sure feels like it is to me. I am also aware that the immunosuppression can have both short and long term consequences. Luckily, the short term ones, in my case, have been treatable and temporary and the long term ones are not all that different from those that I was worried about before with my fluctuating blood sugars. Most importantly, throughout all of this, I feel good and healthy. I also have the sense of helping the diabetes community in moving this research forward. Participating in a clinical trial is truly giving of oneself. I’m proud of myself for this. It feels like the ultimate win/win situation. No matter how my story ends, I will never question my decision to have tried.
My participation in the trial concluded in July 2011 when I reached three years post-transplant. I’d had 15 scheduled clinic visits to Minneapolis and I enjoyed each one. The doctors and nurses who cared for me were professional and compassionate. I realized at some point that they are a very optimistic group of people. They sincerely expect success from this study and for me. I find this to be heartwarming and motivating.
Recently I learned that the main islet cell transplant clinical trial, the CIT, has transplanted the final patient to conclude this study. In a year, all of the data will have been collected from each of the patients. The data from each of the transplant centers will then be analyzed and submitted to the FDA for approval. Dr. Hering announced this at a Diabetes Symposium held in Minneapolis in September. His hope is that in 2013, islet cell transplants will be available as a treatment option for all diabetics. My hope is that this news will spread hope through our diabetes community, will inspire fundraising for the possibilities that will evolve from this research, and that my trial, and others like it, will one day be viewed as having been an important step in the quest for a diabetes cure.
This is a really cool post. I think most of us know that islet cell transplants are not for everyone; the side effects (as Kathy points out) are serious. It’s one of those treatments for which you have to weigh the pros and cons carefully. That said, I wish this was a treatment option for more people with type 1. Even if I couldn’t achieve true insulin independence, it would be nice to have some natural insulin production. Even producing a little insulin would help balance out the highs and lows, which can be debilitating.
I am such a fan of Kathy and all that she does. I’ve had the pleasure of visiting with her a few times, and she is everything you would imagine her to be. We are all very blessed to have her in our lives, either personally or through her participating in this research.
Thank you Kathy!
this was interesting to read…. i too started my struggle with type 1 at age 24. 12 years later, my control is considered good by my doctors, but i usually want it to be better. and the frustrations really do put a damper on many aspects of my otherwise happy life. I can’t imagine feeling “normal” again…. i hope that day comes for us. thanks for sharing your story.
Kathy, The more I find out about you the more inspired I am. I should receive my 2nd transplant soon at UIC. The 1st one did work a little so I’m am extremely hopeful about the 2nd. Keep telling your story!
modern medicine is a joke.
30 pills a day and routine infections! awesome, where do i sign up?
the root cause of this trouble is that nobody is putting serious money on a cure. only treatment is profitable. go over to ted.com and watch Thomas Pogge’s talk
Kathy– this is an amazing story. From the bottom of my heart, thank you for being so willing to participate in a clinical trial like this. You and the others like you are a crucial part of the fight for a cure, and progress would be impossible without you. I sincerely thank you for the sacrifices you have made.
This article is so informative and very well written. All who read this will admire you for what you have gone through,accomplished for diabetes research, and the trail you have blazed for those in the future. Very good article..and very good picture :-) Lora
Kathy you are inspirational! Gary has kept me up to date on the progress, but I did not feel the magnitude of your process until reading your story. I know you will continue to be a mentor to others.