Here is an excerpt from an email I wrote to a friend. I want all of my friends and family to know how I am feeling about the transplant, so I am sharing this with you now.
Bad news. The nerve blocks have stopped working. The doctors expected this to happen at some point. These blocks were one of the main tools to control my pain. A little bit of good news: one possible option is a total pancreatectomy with autologous islet cell transplantation. This is the procedure I have blogged about. They would take out my pancreas, my spleen, part of my small intestine and part of my stomach. Then they harvest islet cells from my pancreas and inject them through the portal vein into the liver. They do all this with one big incision from the base of sternum to my navel or longer.
At first, I was really excited at the possibility of this procedure; it means the possibility of a better life! But then after we met with the transplant team I became more hesitant because the surgery is not a sure thing. There is a 30% chance I will still have pain after the surgery (besides the expected surgical pain) and there is a 30% chance of having brittle diabetes afterward. (60% chance of having diabetes, but only a 30% chance that it will be brittle diabetes.) So essentially, I could go through the whole transplant process and it could be unsuccessful in controlling the pain and furthermore I could have type I diabetes besides. Scary thought. I don't want to make the decision based on fear, though.
I've outlined some information about the transplant:
Best case scenario
the possibility of a life with no pain
few, if any pancreas-related hospital stays in the future
the ability to eat with little or no pain
Worst case scenario
I could still have pain: phantom pain, ghost pain or neuropathic pain
I could have "brittle" diabetes - type I diabetes resistant to control
Somewhere in between scenario
the possibility of a life with manageable pain
the possibility of type I diabetes
gastroparesis - my gut could be paralyzed or at least slow for up to a year, which could require tubes until it resolves
the possibility of death, infection or clots
Preparation for the transplant
Endoscopic procedure to test the degree of exocrine insufficiency, scheduled for the 24th of May
Outpatient surgery to place a feeding tube going from my tummy to the jejunum, then tube feeding (steak-in-a-can) for a couple months to let the pancreas settle down
Endocrinology tests to determine if I have good enough islet cells to be transplanted
So there you have it. I still don't know what I am going to do. In the meantime, I am slowly trying to regain my strength which was wiped out during my two weeks in the hospital. I have improved enough to shower on my own (celebrate the small things!). I even have gotten out of the house a few times!
No matter what happens in the coming months, I have a long road ahead of me and I am continually grateful for the love and support I receive from my friends and family. I couldn't do this without you!