“I am writing to inform you that you have been listed as ACTIVE on the UNOS waitlist as of today, June 10, 2016 at 1:45 pm. We will notify you as soon as we learn of a donor pancreas becoming available.” ….. City of Hope
As I read the words in this email, my eyes blur a little. I’ve been thinking about this so much over the past two months, and now suddenly, like the electric shock you sometimes get when you touch someone, it makes me jolt back from my computer screen.
I immediately start thinking about what’s going to happen next – I now start waiting for the call that will come at any time, on any day, with the news that someone’s life has ended and their pancreas is now available for me. These awful conflicting emotions never end for me. I feel joy about moving forward, but an incredible sadness for the donor I will never know, and deep gratitude for the gift they are about to give me.
So I now begin thinking back about the recent six months, and the remarkable changes I’ve experienced since my first transplant in January.
Before The Transplant
Type-1 Diabetes exacts a big toll on every diabetic’s life. In the four years before my transplant, after 35 years with Type-1, my life had been begun to degrade, and every month seemed to bring an increasing set of issues. The insulin resistance I was developing meant my body had begun requiring increased amounts of injected insulin. I was having more frequent problems controlling my blood sugar levels, particularly the lows, to which I had also become unaware. Twice in December, at 4AM in the morning, I found myself on my bedroom floor, once with blood all over my face, and the floor, apparently from hitting the headboard while thrashing. In both cases I had no idea where I was, or how I got there, or even who I was. I was both depressed and failing.
After The Transplant
In contrast, since January, I have had not one low or high, blood sugar episode.
- I go to bed with a normal 103, and wake up in the morning with a 105.
- I rarely go below 100 or above 135.
- I play tennis 3-4 times a week, with no blood sugar issues.
- I drive and work long hours and never worry about a low.
- I feel just great – healthy, happy, and free of diabetic anxiety.
Earlier this month I found myself actually feeling, for a moment, like I didn’t have diabetes.
The only real negatives are that I still require a small amount of insulin, delivered by my insulin pump, every day, and I take a lot of anti-rejection and support drugs.
Why do I still need insulin?
They really have no idea how many islets survived the transplant into my liver. They also have no way of measuring how many eventually made it and remain productive. So when I was injected with a full complement of islets from my original donor pancreas, a large quantity did not survive.
They know as many as 50% may die during the procedure itself, and another 50% of those remaining may die in the first month as the islets attempt to “graft” – e.g. find a permanent home in my liver. So, it’s a big unknown how many end up really working. It’s the proportion that survive, and my body weight, that determine how hard the surviving islets have to work, and how much external insulin I continue to require, if any.
Thus these are the major questions they are trying to answer with this particular Clinical Trial, and that affect how this is going to work in the future:
- What is the overall combination of drugs required to help more islets survive?
- Does a large infusion of T-Cell reducing drugs administered at the time of the transplant help this survival rate?
- When, and for how long, and in what quantities and proportions, should the anti-rejection drugs be administered to try and improve the islet survival rate.
- Can we minimize the potential negative long-term effects of all these drugs by carefully regulating the dosages?
- Cam we elongate the effective time span of the transplanted islets to potentially last a lifetime?
Where I Am Now
So I personally have ended up with enough islets surviving my first transplant to:
- Produce enough glucagon to eliminate my low blood sugars.
- Produce enough insulin to reduce my external insulin requirements down to about 15-18 units, down from over 65 units a day.
As a result, I can also manage blood sugar levels much better – lower external insulin makes it easier – and I don’t have to worry about lows.
So yes, I am taking a lot of drugs, and yes, there have been some small side affects, and yes, there are certainly some long-term difficulties I may encounter. But oh how sweet this incredible experience of normal blood sugars has been, as well as being able to go to bed at night without worrying about not waking up in the morning.
So Why A Second Transplant?
A second transplant can introduce some potential complications, including producing an overall rejection of the first and second transplanted islets, putting me back to where I was before the first transplant.
So why do it? There are really two answers.
The first is purely personal, a bit selfish, and very simple – I now have had a taste of what life can be like again. I want to see if it’s possible to get insulin free. I want it to last as long as it can.
The second is a bit more complicated, but infinitely more important.
During the past few months I have had many conversations with people whose lives have been affected by Type-1 Diabetes. I spoke with a mother who lost her young son, a Type-1 since age 6, when it finally became too much for his body. I had a conversation with a woman who told me about not being able to afford meals when her insurance was lost, and she and her husband had to sometimes give up food for insulin. She later lost him.
I’ve also spoken to other transplant recipients, and heard their unique stories of coping, triumphing, and sometimes failing. At the same time, I’ve had numerous conversations with people who are coping well with their Type-1 diabetes, but without exception they tell how it has introduced difficult and significant problems into their lives and families These are, of course, lifelong issues.
While they all worry about the future, there is not an ounce of “feeling sorry for themselves” in any of these people. They just do what they have to do, when they have to do it, every day, to cope with their condition. But there is a common thread of hope in everyone. We all want to see a cure in our lifetimes, and we all want no one else, particularly children, to ever have to deal with this condition or it’s complications.
So, the point is: we need a cure, and we need it now. The sooner that we figure out what gets us there, the sooner that we eliminate future bad stories. In my quite personal view, this City of Hope Islet Transplant Clinical Trial, along with many other similar trials, offer definitive and real hope for a cure. I just want to be a part of this process, and I want to see exactly what we can achieve.
So, for me, it’s full speed ahead, and let’s see where it takes us.