Denver Patient C: Part 4

The Intangibles of My Islet Transplant

I think everyone prefers to live with some level of control. But for those like me, control is a powerful drug—something beyond preference. When it’s threatened, my anxiety can be crippling, and I will fight like a dog to protect it. It seems as if the people who experience real inner peace are those who can hold on to control with a loose grip. But for those of us who crave it, that’s a big ask because the only way to beat the addiction is to control the desire. Either way you fail.

Sometimes, however, control is stripped away cold turkey. It’s a harsh way to get clean, but when it happens no amount of dogged fighting will change a thing.

As a quick review, Part 1 of this story, Hope as a Double-Edged Sword, explained how I got into the islet cell program. Part 2, Islet Transplantation in Theory, described what the transplant procedure looked like on paper. Part 3, Islet Transplantation in Reality, revealed how it really went down. Part 4? It’s a confession. The time has come for me to be honest about the unseen impact of my transplant experience—the mental, emotional, and spiritual battles.

Long before my transplant, I read somewhere that the average time a person waited for a donor heart or liver was two years. I don’t know if that’s even true, but when I was signing all those forms and deciding for myself which challenges I would face, it was a number that danced around in my head. I thought about it a lot. I asked myself how people survive that kind of wait, that level of anxiety, that complete lack of control over their circumstances while their lives hang in the balance. I knew I couldn’t do it. I took great comfort in the established protocol of my study: three pancreases, three surgeries, ideally three weeks apart. My story started out better than expected.

When I was placed on the national organ donor registry in December of 2004, my doctor told me to plan on things getting started in spring. “These things take time,” he said. “Yes, of course,” I replied. But in my head, I had decided, in all of my faulty wisdom, I wouldn’t have to wait that long, because waiting is not my strong suit.

Against all odds, we got a call nine days later. There was an organ available. A few hours later, another call. It was not viable. I was crushed and suddenly realized I was in dangerous waters, out of my depth. Only nine days in and feeling all control slipping through my fingers, I wondered if I could do this. But I pushed the doubt aside and kept walking. Unbelievably, my limited perseverance was rewarded, and five weeks later I received the first of my three transplants.

The surgery was a success with only minor complications. I spent the next week in the hospital for monitoring. All initial tests indicated that the graft was taking and producing insulin, though not enough to maintain normal blood sugar. But the protocol called for my next surgery to happen in approximately three weeks, after which my insulin production would increase and my need for supplemental insulin would decrease. Then three weeks later the process would be repeated with the hope that my body would then produce all the insulin I needed on its own.

In the days after my first transplant, I was glad for the mental rest. I wasn’t on pins and needles every time the phone rang. But I had my hands full acclimating to a new reality. There was no room for error in the rigid drug regimen of dosing every 12 hours. My life was ruled by the clock. I was driving more than an hour each way to the hospital every other day for testing. I felt an incredible weight of responsibility to do everything right. It wasn’t just me going through this, and I was determined not to be the weak link. Tensions were high as we all watched and waited to see if my body would reject the cells. But day by day, week by week, our nerves calmed as everything fell into place. By the beginning of the third week, I was ready to go again.

Unfortunately, 10 months would pass before the second viable pancreas was available. Then another 11 months before the third. In the end, I lived on the transplant waiting list for 23 months. Not one other patient in the entire trial globally fell this far outside of the protocol.

It’s difficult to convey what it’s like to live on a transplant list. It’s something you must experience to understand. I have a vague memory of what I imagined it would be like. At that time, the waiting—waiting with no control and no determinable time frame—seemed impossible. I wasn’t wrong. The waiting was horrible, and it occupied my every thought every hour of every day. Thankfully, it was just my sanity and not my life, at least not immediately, that was dependent upon getting that call. Even so, I was not well.

 The lifespan of my cells and the unexpected reversal of so much damage caused by decades of diabetes was extraordinarily atypical within the trial.

Between the first and the last transplant, I lived in a strange limbo with all the demands of diabetes coupled with all the challenges of immunosuppression. The physical strain was significant, particularly once the mouth ulcers and diarrhea set in. The exhaustion was debilitating, and with each passing week, my emotional resiliency became more compromised. At one point my husband and I sent our kids to be with their grandparents, telling them it was a grand plan for them spend the summer on Lake Michigan. In truth, I couldn’t take care of them. Before they left and after they came home, it was my precious friend and neighbor who quietly absorbed my children into her household and cared for them unasked from day to day. It is a debt I still do not take likely and will never be able to repay.

Beyond the physical challenges, the mental impact was something I was unprepared for. As the weeks stretched into months then years of waiting, I found myself playing ridiculous mind games. If this happens, (the this was arbitrary and changed with the wind) then I will get a call this week. I searched for prophetic messages in my dreams as if God would send me clues. As I fumbled about, grasping for imagined control, I was careful to work only with generalities. I never determined specific days when the call might come, thinking that if I named the exact day, it negated all possibility. I often felt like I was losing my grip, which only added insult to injury. Eventually, I traversed each day as some sort of specter just biding my time until it was all over.

Periodically I’d have to face the fact that was I waiting for someone to die. Actually, I was waiting for three people to die. Of course, everyone around me counseled not to think in those terms, but it was impossible not to. And my bitter truth was compounded when I’d catch myself watching the news, wondering if there had been some fatal accident on the highway that day. Then I’d have to negotiate the shame of hoping a call might come. The same dynamic would play out on holidays, particularly those like the fourth of July or Memorial Day when festivities typically involved generous amounts of alcohol. It’s a wretched judgement when you realize the depths you will fall to when faced with self-preservation. Others assured me I was not depraved, but I was constantly battling to make sense of my bizarre and unsettling existence.

This struggle for understanding extended its claws into other areas of my life. As time stretched on beyond all explanation, my faith began to crack alongside my body and my mind.

From my earliest memory, I have never doubted the existence of God. Even so, understanding what that means has never been an easy thing for me. I scrutinize it constantly. All the grappling that came before my season of waiting, however, was nothing compared to the wrestling match that ensued over those dark stretches of time.

Why, God, would you bring me this far only to forsake me? I often felt like a pawn in some cruel game. Heartbreak became anger became resentment. I ranted at God and screamed and begged and threatened and spit and stomped and wept. Then the sense abandonment became utter betrayal when, in the midst of my fight, my daughter was diagnosed with the very disease I was battling to conquer. It was too much. Yet, somehow, I found it impossible to turn my back on God. I suppose I realized there was nothing else to turn to. But I interrogated and accused him every single day. Thankfully, his shoulders are broad and his care is patient.

I’ve never sat well with the idea that God tests our faith—as if we need to prove we’re worth his time and attention. It simply doesn’t align with the omniscient and loving God I know. Yet so much of what happens in this life is beyond comprehension. As I get older I’m more peaceful about not understanding. I can only assume there is great substance and complexity in all that goes unseen behind the veil. Of course, that’s a much easier perspective to have in retrospect.

I will never be at complete peace with my daughter’s diabetes or the timing of it. But as for the 23 months of waiting . . . Once I received my last transplant, my liver produced all the insulin my body needed for six years. The lifespan of my cells and the unexpected reversal of so much damage caused by decades of diabetes was extraordinarily atypical within the trial. While there is no way to prove it, there was casual speculation within my medical team that the extended time between transplants may have been a factor. . . . Hmmm

There is another thing, a complicated event, that remains both heartbreaking and healing for me. A few years after my last transplant, I came face to face with the other side of organ donation as my brother lingered in shallow life after a tragic accident. For three days, my family camped out in the ICU until it was clear he would never come back. It was a comfort to us to know my brother would offer life to others after an inexplicable death. It didn’t justify the pain of losing him, but it did ease the meaninglessness of it. And it helped me reconcile the conflict I still carried for being one of those people who was offered life because someone else died.

“Why don’t you just quit?” It was a question that was occasionally asked on my worst days by both insiders and onlookers. Over the years, I’ve spent considerable time thinking about it. There’s no easy answer, but I have some ideas.

First, the effort I made just to get an interview for the trial was considerable and not easy to throw away. I was also keenly aware of the sacrifices and investments made by others for this research: personal, intellectual, emotional, financial. It couldn’t be ignored. And despite the preceding story, there were so many good days, both exciting and fascinating. I knew I was part of something very special, much bigger than myself, something that might someday benefit my own child. I was also surrounded on every side by the most amazing people, within the trial as well as my life. Sometimes I was carried by them. They sat with me when it seemed impossible to go on. They cried and held me when my daughter was diagnosed. They celebrated every victory with me, every step forward. How do you just walk away from that? But I think the biggest reason was something I wasn’t even consciously aware of at the time. It has required age and perspective to see.

As a young woman, any regrets I harbored were for things I had done or said or thought. As I get older and explore the backstretch of my life, all my regrets are born from challenges I wouldn’t face, words I didn’t say, and dreams I failed to pursue. Somehow, I think I knew that if I gave in to the pain, if I quit, it would offer immediate relief but later would be one of the greatest regrets of my life. This epic journey was undoubtedly the hardest thing I have ever done. But here I sit, all these years later, changed, improved, healthy. I am alive, and I am thriving.

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