Islet Transplant Recipient Shares Her Experiences with the Edmonton Protocol

The author in front of the Peace Tower on Parliament Hill in Ottawa, Canada, which was illuminated in blue in honor of World Diabetes Day. Photo: Mike Pinder

| Jul 11, 2009

April 2009 was an exciting month at the University of Alberta. It marked the tenth anniversary of an unprecedented approach to islet transplantation, recognized globally as the "Edmonton Protocol." Each year since that milestone has produced evidence of progress in the art of islet isolation and the science of the transplant process. I know this because I lived it. I am patient number thirty-three, one of the many who have witnessed the evolution of this continuing innovation.

It has been more than eight years since my journey toward my life-saving transplant began, and over two years since my third islet transplant.  I watched as islet transplantation at the University of Alberta emerged as the event of the decade in the science world, with the news of the insulin-independent status of five of the first seven patients. Since then, over 300 transplants have been performed. During the interim, I have observed small adjustments to the protocol that have led to dynamic advancements. These changes have affirmed the fact that time is a necessity in research.

I believe the progression of islet transplantation can be measured by the recognition that we received as patients. When the operating room doors breezed open during my initial transplant, an operating theater filled to capacity was there to greet me, along with three doctors and multiple nurses. The transplant was a two-hour procedure at that point. The capacity attendance at my second transplant included the media, who were there to collect footage for a documentary. By that time, however, the transplant had been reduced to a one-hour surgery. My third transplant was definitely anticlimactic! The opened doors to the hushed surgery room revealed just two nurses and a radiologist-and the procedure lasted only fifteen minutes! My introduction to islet transplantation came in the form of a fifteen second news sound bite in 2000. The principal investigator, Dr. James Shapiro, was inviting people to apply to the human trials. I became one of the many desperately ill people who registered to become part of the research being conducted at the University of Alberta, three thousand miles from my home.

I can't say that it was an easy decision. In fact, it was anything but. I had been beaten down by years of illness, despite premium care and an in-depth knowledge of the disease. Diabetes had affected my ability to think clearly, to reason, to believe that my state of health could change dramatically. Ingrained in my psyche from years earlier was the belief that in some way I was to blame for all that was happening to my body, and I did not question that the medical board responsible for candidate selection would assume the same thing. I viewed the application form as a "life-saver just out of reach."

Despite my careful attention to medication, food, and exercise, diabetes had been taking away my life a little at a time. The disease had thrust me into the depths of some of the most serious complications that an individual can face. I dealt with severe neuropathies (damage to nerve endings) of the stomach, chest, face, hands, and legs. I had endured over 23 eye surgeries, yet was days away from complete blindness. I lived daily knowing that I suffered from the single most deadly complication of diabetes, one that claims the lives of many people-hypoglycemic unawareness-a condition referred to as "dead in bed syndrome."  Diabetes had robbed me of my independence by making it difficult to navigate safely through my own environment. I lacked energy because of my inability to eat real food. Neuropathy had reduced the mobility of my hands despite multiple surgeries, and balance issues prevented me from walking any distance. I was always in excruciating pain. I wasn't living-I was barely existing.

I no longer considered myself a person with diabetes. I was a diabetic - the disease was all that I was.  Yet when my application to participate in the Edmonton Protocol was accepted, I hesitated to proceed with it.  I had little energy left to fight, and each step of the journey toward saving my life presented many roadblocks. I questioned my strength and doubted my ability.  There were many times when I didn't think I could go on. But I did, and I won.

I kept a journal to document my experience. The title I chose, "One Step Up From A Lab Rat," did not reflect on how we were treated as patients. Rather, it emphasized the slightly sinister sense of humor needed in order to deal with the desperate state I was in while navigating through unfamiliar territory.

As part of a human trial in a research protocol, one step up from a lab rat is unequivocally what you are. Human trials participants are a select group of people who engage in the research process after animal trials have been successfully completed and federal approval has been granted to proceed. At times, there are no clear answers when issues arise, and they can be just as puzzling to the research team as they are frightening to the patient. Participating is a leap of faith because no previous data are available upon which to base your decision, and there are no guarantees of success.

If only we had the ability to see into the future! Shortly after my first transplant, dynamic improvements began to happen. I experienced heartburn - not a great sensation, but an indication that my body was healing itself. With regeneration came the ability to digest food - food that most people take for granted, like bagels. Due to blood sugar stabilization, I witnessed an improvement in my vision - my lens cleared, the swelling around my optic nerve began to reduce, and the cysts disappeared. It was a medical miracle!

The latest protocol under which I was transplanted incorporated unique medications that required less islet mass. The outcome thus far has been an unbelievable two years and six months of living insulin-injection free! Life without diabetes may be considered a utopian dream for those who spend their life "micromanaging" this unpredictable disease, but perhaps it's not just an elusive dream anymore. The islet transplant has allowed me to experience life "diabetes-free." It is a gift of survival that I have been able to experience after twenty years of struggling with the disease.

It has been a long journey, but I now have a life that I never thought possible. In the early stages of any transplant, it is two steps forward and one step back. However, the relief of having stable blood sugars, of knowing that I won't be faced with another day of struggle and the looming fear of diabetes complications- well, that makes everything else tolerable. I cannot express the immense relief I feel when I test my blood and the reading is within normal range. I can't explain the liberating feeling of being free of insulin injections. I go for a walk as often as I can now, because I have energy to take me past the end of the driveway. I make plans to do things with people, because I know I won't be rebounding from a devastating low that has left me without energy and vision. My skin no longer aches when I am given a simple hug. There are so many new and wonderful benefits that I am experiencing every day. I smile because I feel a sense of peace, I feel relief, and I feel... human. My survival is a testament to the necessity of research and the need for people to become involved.

"One Step Up From a Lab Rat...A Diabetic's Personal Journey Through An Islet Cell Transplant" is a patient's perspective on a very personal, difficult road, infused with the excitement of being part of groundbreaking diabetes research. The e-book is available for download at www.shortcovers.com. The author welcomes your comments below this article and also at donna@facade.ca

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Categories: Blood Sugar, Books, Complications & Care, Diabetes, Diabetes, Food, Insulin, Islet & Pancreas Transplant, Personal Stories, Research, Type 1 Issues, Type 2 Issues


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Comments

Posted by Anonymous on 15 July 2009

Donna, your story is so encouraging. It gives hope to the thousands of diabetics out there and to the families who care for them. Your courage and your will to continue on in the depths of your health crisis is remarkable. I'm so thankful you are sharing your story. I know that anyone who is diabetic or has a family member who is diabetic will come away feeling that there is a light at the end of the tunnel. You've provided information about the transplant that not many people are aware of but also your personal journey gives others something they can identify with, other than just facts. Great job...Love Beth xo

Posted by Anonymous on 20 July 2009

A truly brave person and amazing story. This book is not just for diabetics!

Posted by Anonymous on 22 August 2009

I wish you the best of luck but have no idea why such a bright person as you would join a cult such as Tudiabetes

Posted by Anonymous on 14 September 2009

Donna,
I commend your courage to participate in the Edmonton Protocol and with your deteriorating health you were running out of options for other alternative approaches to treatment.

My only curiosity is how have you managed your Diabetes in the past to go through such lengths of complications?? What were your A1C's like???
Were you following your blood sugars and diet???
Were you taking your insulin 24/7??


The fact is if blood sugars are monitored carefully including watching your diet; and visiting your Endocrinologist, nerve damage and blindness and other Diabetes related complications should be minimal and/or non existent.

Unfortunately I am Type 1 for 19 years. No matter how busy my schedule is during the day I still check my blood sugar levels regularly. I also follow my insulin regimen religiously and follow my diet. Thus far I have no complications to speak of. However I am Anemic.

To be perfectly honest I am very confused and disturbed to hear your experience with living with Type 1 Diabetes.

As a Canadian I know the surgical procedure is free for Canadians for joining this Edmonton Protocol. However the cock tails of anti-rejection pills you have to take for life are not free.

I will NEVER subject myself in partaking the Edmonton Protocol. Why?? Because there are health risks involved. The 9 or more anti-rejection pills you have to take for the rest of your life will likely damage most of your organs and thus shortening your life span. This is FACT not fabrication.
To make matters worse the Diabetes comes back after a year or two.

I am curious if Dr. James Shapiro would offer this radical surgical procedure to any of his family members if they had Type 1 Diabetes.

I don't believe in stem cell research. To my dismay I found out that it creates benign tumours in mice.

So is anything else available in the near future that won't cause organ failure and/or tumours?? The answer is "YES".

Google "Living cell Technologies" this will be the correct path to a cure in Type 1 Diabetes in the very near future. I just wish they would open a facility in Canada. They do have a facility in Colorado USA.
Wherever they are I will go and get this done.

As for Donna I wish you the best of luck.

Posted by Kathy on 18 October 2009

I still remember reading about you Edmonton patients when you first had this done. I just knew that this was the right direction for the eventual cure. I had my islet cell transplant in Minneapolis last year and understand what you mean when you describe how liberated you feel. It is physically and psychologically so much easier. I feel so unbelievably lucky.

Posted by donna1 on 19 October 2009

Thanks everyone for their comments and opinions.
As it states in the article, I was a compliant patient. It is difficult to keep up with all research, but if you do a search on "double diabetes" you will understand what was happening to my body--the body develops an inability to metabolize insulin properly.
The Islet transplant may not be perfect as of yet, but I am grateful for researchers, such as Dr. James Shapiro, who stake their reputation on these on-going trials (now taking place in every major university around the world).
Had Dr Shapiro not accepted me to the trial, there is no doubt in anyone's mind, I would not be alive today. When offered those options: a chance at life or inevitable early death--I think the choice is clear. Every drug we ingest or inject has side-effects; everything synthetic that passes through our liver comes with repercussion.
I chose to be grateful to be alive today.

There was a step one in the development of insulin which keeps millions alive; I'm step one in islet transplantation.
If you are not supporting collaborative research, you're standing in the way of progress.

Donna

Posted by Anonymous on 20 October 2009

Dear Donna, I understand why you had to have this procedure, I am also a type 1. But personaly it would have to be as in your case a life or death situation for me have a transplant. Have heard of Doctor Denise Faustman's research? She has cured diabetic mice by giving them the tuberculosis vaccine. Please check out her research and www.Faustman.org. Her research is my hope.


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