DENVER PATIENT C: Part 1

Hope as a Doubled-Edged Sword

If someone were to ask me to tell them an interesting fact about myself, I’d probably answer with something like, “Well, I am written up in a small collection of medical journals. In the world of islet cell transplants I am known as Denver Patient C.”

It’s a bit of an interesting story, really. Some aspects are more of a torrid tale. Others the recounting of an epic journey. And all of it quite miraculous. Those medical journals are all collecting dust somewhere now. It baffles me when I think that entire adventure started nearly 24 years ago and stretched out over 13 fascinating, often challenging, years of my life. It definitely was not for the faint of heart, but it changed everything for me and for my family.

When I was diagnosed with type 1 diabetes in 1974 my parents were told we were 10 years from a cure. We were given the same timeline two years later when I became insulin dependent. And when those 10 years passed, the projections had not changed. The cure for type 1 diabetes seemed to loom perpetually 10 years in the future. At some point within all those years I made a conscious decision to stop listening. It wasn’t cynicism. It was survival. Somehow, I knew that by fixing my sight on nothing but that elusive theoretical cure I would live life in a constant state of disappointment. Or I wouldn’t actually live life at all, always waiting to venture forth until after I was cured. So, I paid no attention to the periodic breakthroughs or proposed new paths. Instead, I simply settled in. I always figured if something important, something real, ever happened someone would let me know.

In July 2000 I had been living with diabetes for more than 25 years. To me, it was the devil I knew. I didn’t like it, but I knew what to expect of it. I could barely remember my life before it, and I never even dreamed about a life without it. It simply was part of me. Even though I was reconciled to it, the toll the disease was taking on my body was becoming more apparent, and Chad and I were both quietly aware that I might not see our children fully grown. We didn’t dwell on it, but we did occasionally talk about it, if only in the abstract.

Then one day with the news on in the background of the morning chaos, Chad’s attention was captured by a story on a breakthrough new treatment being trialed for type 1 diabetes called The Edmonton Protocol. It was completely new and highly speculative, but for some reason, when Chad told me what he had seen I grabbed on to the idea and would not let go. Suddenly I had invited hope into my life, and I immediately knew it would complicate things.

The Edmonton Protocol involves the harvesting of insulin-producing islet cells from the pancreas of a cadaver and implanting them into the liver of a type 1 diabetic. There they take over insulin production while being protected with immune-suppression therapy.

To be honest, I can’t recall a single thing about my next steps. I have absolutely no idea how I tracked down any information on the trial. The internet was still in its childhood, so I couldn’t simply google it. But somehow I found out something and got my hands on an application. Here is what I wrote in my journal on July 7, 2000, the day I mailed it off.

It is done. I have allowed hope to enter in. It may kill me. That is my biggest fear. Not that I won’t get into the study. Not that the islet transplant is a farce. Not that it won’t be done in time. No. These are all fears, but not the biggest.

I have successfully kept hope at bay for more than 25 years and suddenly I must sleep with her, eat with her, breathe and blink with her. Does she not know I have other things to do? I have a job to do, dishes to wash, clothes to fold, children to love. I have a life. I have responsibilities. My biggest fear is that she will get in the way of it all. She will take over my thoughts and eat up my time. It wouldn’t be so bad if I thought our relationship was based on truth. But I don’t know that it is. The foundation on which she is perched is all speculation. It is all fancy. It is a dream.

Now that I’ve entertained hope, I have allowed myself to peek at a life in which I might someday be well. And this makes the fact that I am not all the more intolerable. My hands feel normal less and less. I can’t bend my arms without them falling asleep. Maybe the next surgery will correct that. My feet are often cold and tingling. I don’t know what that means. I don’t want to know. The neurologist mentioned that nerve problems could be the precursor kidney problems. I have three burst ocular capillaries. When will the next blow? When will my sight be threatened?

I’ve never thought about this stage. I’ve never let myself. Now, it’s all I think about. How could this happen? But I cannot cry. I cannot mourn. I can’t let down. That will be the death of me. I have spent more than 25 years keeping hope at bay, coming to terms with the beast who is as much a part of me as my heart and my lungs. Why did I let hope in? I hate her, yet she is my only hope.

I have a perfect memory of writing those words, and I was not too far off. My endocrinologist told me to prepare for a long wait. “Research moves slow,” he warned. “I know,” I told him. But I did not. I don’t know if it was naivety or stubbornness or a simple refusal to be realistic, but I told myself that by the end of the year something would happen. Needless to say, Christmas came and went. So did the next.

During that time, I got the occasional form letter from the research foundation. Very little of the information was valuable to me personally. At some point I received a letter telling me I was not the right candidate for the early trial. Later I got another informing me that the study was being expanded to the Barbara Davis Center in Denver. Hoping for tangible information, I contacted them, but staff was turning over and phone calls went unreturned. Finally, I spoke to someone, but she had little to offer. Yes, they were beginning work, but no one knew when the program would actually begin.

Meanwhile, my health was deteriorating. I had less and less energy and more and more surgeries on my hands. (I had ten surgeries in total on my hands and wrists over five years to correct tendon damage as a result of the disease.) My immune system seemed overworked and ineffective. But time passed with no information and no way of getting any. In March of 2002, I got a call from the Barbara Davis Center. They had been informed by the National Registry that I was interested in participating in the study. They were hoping to begin in six months. So, I sent back the mountains of paperwork and prepared to wait. Six months came and went. Then another and another. Crickets.

My worst fears were being lived out. I had let hope in and allowed myself to entertain the thought of being well. Now it seemed like some sort of cruel game. At some point, I trained myself to loosen my grip on the idea. I had to or I’d go mad. Eventually, I didn’t think about it every day. Then I thought about it only occasionally. Then it was like recalling a dream. Sometimes I wondered if I’d imagined the whole thing. When that dream began darkening my entire existence, I had let go altogether. But even then, and against all common sense, there was always a still and small voice, my quiet hope, telling me it would happen. Never when, simply that it would.

Then in October of 2004, more than 4 years after I had set my sights, I made an innocent call to my endocrinologist, and he told me The Barbara Davis Center was looking for patients. I began a two-week all-out assault. I called and I called and I called again. Every day. I would talk to someone. Eventually I got past the receptionist. They had no record of me, no paperwork or name on a list. Somehow all of that had disappeared. But I convinced them to set up an initial appointment, though they warned that the screening process was very selective and research moves slow. “Yes,” I said. “I do know that.”

The original appointment was made with the coordinator of the program to do some initial bloodwork and fill out even more paperwork. Chad and my mom went with me. But as the appointment progressed, more and more people were added to our schedule. They asked questions. We asked questions. At some point, someone asked why I wanted to do this. “I want to feel better,” I said. “I want to see my children grow up.” Apparently, this was the right answer. It suddenly seemed they were as excited to meet me as I them.

It turned out I had the perfect health scenario—the right mix of side effects and intact organs. The day ended with a face-to-face with the chief surgeon. It was the only time he had seen a patient so early in the screening process. After showing us the operating room and the research wing of the hospital, he told me he saw no problem with my inclusion in the program. I burst into tears. I was seen and accepted faster than any other patient in the program, the third of only four. Hope had not failed me nor deceived me.

On December 26, 2004, my name was added to the national registry of patients waiting for a pancreas. My epic journey had finally reached mile marker one. I didn’t know how many miles lay in front of me, and that may have been a good thing. But at least now I was actually walking. And, again, waiting.

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