Nearly a year to the day that my Endocrinologist asked me "has anyone talked to you about a pancreas and kidney transplant?" I got a letter from the Veterans Affairs Hospital in Durham, NC. Normally those letters are either about an upcoming appointment or a letter from a doctor. They are never urgent or earth-shattering. That is what I thought when I saw some mail from the VA. This one was.
"Dear Mr. Goffe,
"I have been informed that you are interested in pursuing pancreas/combined kidney/pancreas transplant through the VA Health Care System. The Durham VA Medical Center Nephrology Section will be responsible for your evaluations and submission of your transplant referral packet to the National VA Transplant Board. Currently the only VA Transplant Center performing pancreas or K/P transplants is in Iowa City, IA.
"Once we have completed all of the required testing and reviewed the results, we will submit your packet to the VA Transplant Center you have chosen for review. Final decision as to if you are a suitable kidney transplant recipient will be up to the transplant team at the VATC.
"The evaluation and referral process to receive a kidney or pancreas transplant through the VA system is very involved and time sensitive. If you would like to discuss this option further, please contact me within one month to set-up an appointment which will fit into your schedule. I have also included some general information regarding kidney transplant through the VA FOR your review..."
My first reaction was "holy crap - this is for real!" A few days earlier at an appointment with my Nephrologist (a kidney specialist treating me for Stage 3B kidney failure) the topic came up, as it had at previous appointments. This time the referral for me to see the Transplant Coordinator went through.
My second thought was that they wouldn't have to wait a month for me to schedule an appointment - 7:30 Monday morning I'd be giving them a ring.
My third reaction was a jumble of thoughts.
- Memories of what it was like not having Type 1 Diabetes came back.
- Nah - it'll never happen.
- They wouldn't do me - my kidneys are not trashed enough.
- But two lows (hypoglemic events) had damn near killed me in the last two weeks. (I passed out and woke up hours later surrounded by empty juice boxes and a rescue kit I couldn't figure out how to use because my mind was gone. A week later another resulted in an ambulance ride to the hospital with a core body temperature so low I had to be treated for hypothermia. In North Carolina. In August.)
- I'd have to overcome some pretty steep odds. In America, over 1,500,000 people have Type 1 Diabetes. Of those, just 1,683 are on the list to get a pancreas and kidney. Even fewer - 903 - are waiting to get a pancreas alone. That is 1 in 891 (0.11%) and 1 in 1,661 (0.06%) respectively.
- But maybe - just maybe - combining my failing kidneys with my uncontrollable diabetes (more about that in coming days) might warrant the procedure.
- Would all of my other complications work for me in having this done, or would they work against me?
- If this does happen, my joy will be tempered with the certain knowledge that somebody else had to die.
- This is so unusual - both generally and for somebody with T1D that it is worth wring about.
That is what I'll be doing - telling what is happening and my thoughts/reactions.
Will this actually happen? I have no idea.
Do I want this to happen? Absolutely, 100% yes.
Will I be disappointed if it doesn't? Of course, but you don't always get what you want.
What is next? Coming up I'll describe how I got to this point, and my first meeting with the Transplant Coordinator.