Approaching 120 days post-transplant, I feel very, very good. No Lows. No Highs. A1C’s in the 5’s. It may not last forever, but it’s pretty sweet right now.
Where I Am Now
At this point in the clinical trial we have a pretty good idea of how my body is adjusting, and how well the transplanted islets are working. I’ve been very lucky. I’ve had few problems, and received relief from some serious issues. I’m not sure exactly what I expected, but I know I’m very grateful for where I currently am.
The biggest surprises have been how healthy I now feel, how fundamentally my life has changed, and how fast it all happened. At this particular moment, I can almost imagine what it would feel like to be a “cured” diabetic.
What Does “A Cure” Really Mean?
Diabetes doctors typically hate to use the “C” word, and almost never want to talk about it as a short term possibility. Most long-term diabetics never really think much about it either – we all laugh when we hear “probably five years”, because we’ve been hearing that specific phrase for the last fifty.
The City of Hope cautioned me strongly going into this clinical trial that while a cure for Type 1 diabetes was certainly the eventual goal, it was very far away, and certainly was not going to happen for me. I accepted that completely. I decided I just wanted to be a part of this experiment, albeit certainly with some short term selfish motivation, but primarily because I wanted to play an active part, no matter how small, in the long term search for a cure.
The Diabetic’s Perspective
What most doctors rarely understand is how diabetes is usually viewed by the diabetic. Doctors treat us every 3 months, but our personal lives focus every single hour of every day on our goal of alleviating and managing symptoms. To do this we carefully monitor our blood sugar with finger sticks, multiple times per day. We take insulin with every meal, trying to properly estimate the carbohydrates we are eating. We attach ourselves permanently to insulin pumps, or continuous glucose monitors, 24 hours a day, to try and predict and prevent problems.
And yet, even with all this attention, our bodies sometimes betray us, and we end up with a severe hypoglycemia (low blood sugar) or hyperglycemia (high blood sugar), and the potential of devastating results. Our parents, partners, children and friends worry about us, deal with our lows, and are subjected to our condition.
From a quite personal view, if someone can eliminate my symptoms, irrespective of how it is done, I can easily find myself feeling I am close to “cured” – at least temporarily – even though I know I am not.
How I Feel At This Moment
Prior to my transplant, I was having several severe hypoglycemic episodes every month, sometimes a couple of times a week. I never went to bed without wondering if I would be awakened by a Paramedic, or perhaps not wake at all. I never played a game of tennis without worrying about a low blood sugar on the court. I never went to a party, or a friend’s house, without worrying that someone might have to step in and take care of me at some point during the evening.
I had started to accept, in a quite fundamentally terrible way, that it was only a matter of time until a serious low blood sugar would end with bad permanent results, or perhaps kill me. My insulin requirements were also gradually going up – and I knew more external insulin automatically meant more likelihood of bad complications. I wasn’t in a great frame of mind.
I had also frankly given up on the idea of ever getting seriously involved again, or re-married – how could I possibly ask someone else to deal with situations that I could barely tolerate myself?
Suddenly, since January 1, the day of my transplant, I’m now in a different place. I’ve not had one hypoglycemic episode, and, as the months have progressed, I’m looking at things much more brightly.
I was quite skeptical at first, thinking surely this wouldn’t continue. Every time I checked my blood sugar, I was prepared for the worst. But, to my continuing surprise, my blood sugars are now almost always normal. I go to bed at night with a 110 and wake up with a 113. I eat breakfast, and two hours later it is 105. I work all day, have meals, and play a couple of hours of tennis in the late afternoon. 110 before tennis, 100 after. My highest blood sugars are never more that 140, whereas before they would be 300, 400, or sometime higher. My lowest are now never close to serious, and I literally never feel the fear of a low anymore, no matter what I am doing, or where I am.
I continue to take insulin, about 20 units a day, down dramatically from before the transplant, and I still require a pump. I am, however, relieved of the major thing that was destroying my sense of well-being, and I’m beginning to lose the constant, unrelenting fear of the next low.
So, no matter what happens from this day forward, I feel I’m at least temporarily free – read “cured”, in my mind – from the “worst” of diabetes.
Now that this is beginning to sink in, I’m experiencing a profound, overwhelming feeling of change in my day-to-day life, and I’m starting to think about a future I thought I might never have. I just feel better than I ever could have imagined when this started.
So What’s the Next Step?
So next the question becomes: where do we go from here? Stay as I am, and don’t push the envelope? Have another transplant now, and try to get insulin free? Wait for a while, and see what happens, then make the decision later if my implanted islets start to fail?
There are risks with each approach. Waiting for failure doesn’t appear to be a great option – if my islets begin to fail, it’s likely new ones would fail also. Staying with the present isn’t an easy choice either – I got into this knowing the risks, to see how far I could go, and to find out what they might learn as I went there. They also told me that a second transplant was more likely to work if done closer to the first.
The Decision – A Second Transplant
So everything seems to point to a second transplant now.
There are definite risks – the second may be rejected, and thus cause the first to also be rejected – destroying all the implanted islets and putting me back to where I started – low blood sugars and all. This recently happened with another patient, and they’re not exactly sure why. While not pleasant to contemplate, I finally got beyond this – there weren’t any guarantees going into this anyway, so that really hasn’t changed.
So after weighing the alternatives, and with a great desire to continue moving forward, I’ve made the decision to have a second transplant. I’ll go back on the recipient list after a few more tests, and it will happen whenever a matching donor pancreas becomes available. It could be quickly, or it could be weeks or months.
Do I Think This is Going to Last?
My good results won’t last forever. This is not a cure – it’s just one small step in the long process to get to a cure.
My transplant may last a few months, a year, maybe two, five, ten, or, who knows, even longer. The immunity from low blood sugars will last as long as any islets are functioning. No one can really predict, however, how long any of this will last, and of course that’s what this trial is all about. They’re trying different methods to see how long they can make it last. But, no matter how long it lasts, it’s been an absolutely thrilling ride, and I once again know the feeling of being “almost normal”. The talks I have with people every day who are part of other trials, or with people with Type-1 diabetes today, have been blessings beyond my ability to describe.
So even if it ends for me tomorrow, I’m a much better person today for having been part of it.
Doctors, Nurses, and Donors have made this all possible
I believe that clinical trials – this one and others – will eventually mean a lifetime of normal living for anyone developing diabetes.
The doctors and medical professionals involved in these clinical trials around the country are dedicating their lives to looking for a cure. There’s not a single person on my team who isn’t focused on this cause, and just working with them has been inspirational.
The pancreas donors deserve our highest thanks and prayers – without the donation of their organs, after they die, none of this would be possible. There’s a special place in heaven for these people, as they live on in our bodies because of their gift. I’ll soon have two inside me, and not a day will goes by for the rest of my life without me thinking about them.