Denver Patient C: Part 3

Islet Transplantation in Reality

There are just a few things I know without question, such as, life and time are the best of all teachers, and they work fairly well together. One of their most poignant lessons for me is to be careful about making definitive statements about what I will or will not do, where I will or will not go, what I can or cannot withstand. These two sage instructors have taught me that we are all capable of just about anything given the right set of circumstances, good and bad.

As a quick review, Part 1 of this wild adventure, Hope as a Double-Edged Sword, told 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 is all about reality.

When I left off, I had just signed my name to various HIPAA consent forms. I had also, rather ridiculously, decided which of the numerous challenges outlined in those forms I would allow myself to experience. So, I prepped myself for three pancreases, three surgeries, ideally three weeks apart. This is where we pick up.

In broad terms, the reality of my islet cell transplant is that it worked just as the theory had hypothesized. Over the course of three surgeries, I received the islets I needed from three pancreases to kick start my body’s insulin production from my liver. The surgeries were only moderately invasive, so the recovery from that perspective was not terrible. Each required a hospital stay, but even those were increasingly short, the first being seven days, the last, four.

I was told from the beginning that if the procedure worked, it probably wouldn’t be permanent. Just as theorized, it wasn’t, but for six years I lived with no insulin pump, no injections, and remarkably normal blood sugar. My A1C, a measurement of average blood sugar levels over three months, was never quite low enough to be categorized as “non-diabetic”, but it was low enough to let my liver run the show without endangering it or my general health.

Over those six years, stable blood sugar allowed my body to rest and get strong, more resilient. Amazingly, in that time, nearly every side effect of the diabetes that had threatened my life healed completely. Many that no one ever anticipated, including nerve damage around my heart, a concerning future for my kidneys, and burst capillaries in my eyes that are the harbingers of diabetes-induced blindness.

Today, more than 16 years after my last transplant, I’m back on an insulin pump, but my daily insulin needs are dramatically lower than before the trial. Some days, sometimes strings of days, I don’t need any insulin at all for food, a mystery no one can explain. My husband is certain there are some lingering cells slumbering about in my liver that periodically open their eyes and make some noise. The doctors say ‘no way’ but can offer no explanation. It’s baffling.

As incredible as it all was and is, it wasn’t all upside. As I explained in my last post, the list of potential side effects from the anti-rejection drugs was long and unpleasant. I can’t remember the full list, but there are two burned in my memory because they made life challenging for a number of years. As you might guess, both were on the list of side effects I couldn’t tolerate, therefore, they wouldn’t happen. (Feel free to chuckle. I do every time I think about it. I also roll my eyes. At myself.)

The first was diarrhea. For the sake of decorum, we needn’t get into any details there, but basically my digestive track was all but wiped out. It didn’t happen all at once, but over the course of about six months, damage was being done. Then a foolish accident ripped my big toenail off and opened the door for a serious foot infection that my compromised immune system couldn’t control. Increasing doses of strong antibiotics pushed my body over the edge. For the next seven and half years, nearly everything I ate went right through me. Some of that damage was permanent. While much improved, I still have to treat my digestive track with kid gloves. Yet, as unpleasant as that was, it wasn’t the worst.

While studying that list of potential unpleasantness, I remember quite clearly seeing Mouth Ulcers. I also remember just as clearly thinking, Well, I certainly can’t, thus won’t, deal with that. I was wrong. Sometimes I still feel, like phantom pain, the sensation of an ulcer germinating under the soft flesh of my mouth, whispering of its imminent arrival. It still makes me close my eyes.

Most of us have had a painful canker sore. These ulcers were not those sores. For six years, until the offending drug was finally replaced with something kinder, my mouth was filled with burning holes, as many as ten at a time—some a few millimeters across, others nearly the size of a dime. Inside my cheeks and lips, on and under my tongue, on my gums, often lasting a month then a few days reprieve, a week if I was lucky, before the next lot appeared. I carried viscous lidocaine, a thick liquid pain killer, with me at all times, constantly dabbing it in my mouth when I needed to talk or try to eat, cringing at the sting.

 I was told from the beginning that if the procedure worked, it probably wouldn’t be permanent. Just as theorized, it wasn’t, but for six years I lived with no insulin pump, no injections, and remarkably normal blood sugar.

The sores ate away at my mouth, but even more viciously at my sanity. I hate to sound dramatic. I mean, I really hate it, but I don’t know how to describe it any other way. My family bore the brunt of my short fuse, anger exploding at the mildest provocation. And my regular tears, which I tried to hide but didn’t always succeed. Meanwhile, it was nearly impossible to eat, and what I managed to get in, passed right through me. Needless to say, I was exhausted all the time.

Those were the two biggies from a physical standpoint, but there were others—some unpleasant, others bizarre, many inexplicable. As background, I, along with my daughter and my mother, have an odd body chemistry. When any of us is given a new medication for anything, we don’t even glance at the common side effects. We go right to the, “In .003% of patients…” Those are the ones we will have nearly every time.

As a small sampling:

Within a year of my first transplant, I developed cataracts in both eyes that required surgery immediately. No one saw that coming, and the doctors couldn’t find reports of it in any other patient in the program. While there is no way to directly tie it to the research going on in my body, it isn’t typical for a 38-year-old woman to develop cataracts over the course of 12 months in both eyes. Prior to this, my vision had been perfect aside from the burst capillaries of diabetic retinopathy. But that doesn’t impact vision until it’s advanced.

Also, without explanation, my senses of taste, touch, and smell went into overdrive. Let me assure you, heightened senses are no super power. They are awful. I quickly learned that most smells in the world are bad, our food is host to many awful-tasting chemicals undetectable to the average tongue, and every child who has ever begged to have tags cut from their clothing is justified.

Thankfully, my nose and tongue corrected themselves as soon as I was off the drugs. But I still have mild sensory issues. Elastic of any kind against my skin remains a big no-no, and most of my jewelry is collecting dust. It’s only through a lot of mental exercise that I can still wear my wedding ring, and even at that, not every day nor all day.

Of course, I always had to be careful about getting sick. Even so, I’ve never been particularly prone to illness and that continued in relative terms. During the eight years I had a suppressed immune system I was never hospitalized for illness or infection. The only illnesses I struggled with significantly were respiratory. I didn’t have them more severely than before, but when I did, they could linger for months. There were other issues as well, but I can’t remember many details, so clearly, they were tolerable. None of this was fun, but neither was it a surprise.

I did my best to bear up quietly. “You chose this,” I’d tell myself. “You have no right to complain.” Despite my best intentions, I often failed. My children were seven and nine when this all began, and they needed me. Unfortunately, I was not always the mother I wanted to be. They are grown now, and I thank God they don’t remember this. Or, at least, they tell me they don’t.

I mentioned in an earlier post that there were many unexpected gifts that came out of this experience—things that didn’t necessarily negate the difficulties but certainly made them easier. The best of these was the privilege of knowing the people at the Barbara Davis Center who were going through this whole ordeal with me, albeit on the other side of the examining table.

At the start of the Denver trial, there were only four patients, and within 18 months, I was the only one left standing. So, for more than six years, the team was small—four permanent players other than me—endocrinologist, transplant surgeon, program coordinator, and head research assistant, plus a few rotating interns. Early on, I saw these people at least three days a week. It didn’t take long for us to become a family fighting for a common cause, each deeply invested in the outcome. Nearly twenty years later, one of them remains a significant person in my and my husband’s life, having transitioned from trusted doctor to trusted friend along with his wife. It was the combination of my actual family and these amazing people who got me through the uphill struggles of this journey, the hardest of which will be the topic of my next tale.

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