I was diagnosed with type 1 diabetes for the first time around the age of 12. That was 23 years ago when treatment options and information were limited and not as advanced as they are today. Needless to say, I did my best and lived a mostly normal, uncomplicated life. In my late 20’s, the complications began. Once they started they multiplied and I went downhill rapidly. I went blind in both eyes at separate times and underwent multiple surgeries and treatments that restored my eyesight completely. Renal failure was next, with peritoneal dialysis being my main treatment. For the sake of time, I won’t talk about all the bumps and bruises along the way, but there were many. After 2 years of being on the list for a kidney/pancreas transplant, I got my call.
5 days after the transplant, I left the hospital ready to live this new life and never look back. After 20+ years with diabetes I now no longer had it. I could eat anything I wanted, whenever I wanted! No more fear of a low blood sugar when I took off on a ride, or a hike, or other activity, no more depression and mood changes from the constant blood sugar swings. It was amazing, and I felt indestructible. The past 3 years were without doubt the most amazing years of my life. I was finally able to travel out of the country numerous times. I started racing road bikes again and moved to the beach. I didn’t have a care in the world. No hospitals, no rejection episodes, no side effects from the immunos.
Last month I had my reality check and was brought back down to earth. My transplanted pancreas did not get rejected, but the same autoimmune disease that made me diabetic the first time did it again. Now I am type 1 for the second the time.
It was always a fear and was always something that I knew would happen again, I only hoped I would have had more time. The big question is what to do next? The answer is really quite simple. Come up the with the survival plan for round 2. The transplanted kidney is functioning perfectly … for now. That will not last though. Even though the diabetes went away for 3 years, the complications and damage from the past did not; it was merely put on pause. Now every minute I spend with my sugar levels in the danger zone is putting me closer to the end again. I have been trying to get in touch with organizations doing research on any number of “cures” for diabetes. I always said that if things worked out this way for me that I would try to be more proactive in helping everyone to get closer to the fix. I want to be a guinea pig, test the artificial pancreas on me, new islet cell transplant methods, nano technology, whatever is out there. I just have not come across anyone who wants to get in touch with me I guess.
So I have my plan in place now, unless something new and exciting arises. I’ve done this before and I know how it goes. I will be getting a pump or at least a CGM, preferably the CGM because I live a life with no routine and having that instant blood sugar level info is all I need to control it; I’ll take 20 shots a day if I have to. I’m currently researching where my next transplant center will be. I would like one that does not follow the mainstreams position with the over medication of immunos, preferably one that is working on doing bone marrow transplants with the organs to eliminate the need for the suppressants. I am covering my bases insurance-wise. Most don’t realize that some companies advertised on television have some great payouts and plans for these situations, and are well worth every penny. This time I will leave the transplant with over $20K in my bank account. I know that I will again use the peritoneal dialysis because it is very natural, not a lot of drugs or meds required, it effective and increases the likelihood of a successful transplant. I will have a road map in place in the next couple of months, I will take detours when needed, but it’ll pretty much get me where I am going.
The personal and emotional side to it has always been the tough part. It’s going to be rough. I already am experiencing the ups and downs of the diabetes rollercoaster. Some days my mind is strong and I can’t be beat while other days I am ready to just toss in the towel and let myself die. I understand why I am thinking this way, but it still is tough to keep it all under wraps. I have begun to go into my type of survival mode, it’s tough on my friends and family because I push everyone away. I deal better on my own, I like to suffer alone.
All in all it will be better this time around. I have decided I will fight it again and I will beat it again. I’m good at surviving, this is my life and it’s always been this way. I don’t care how many times I have become a type 1 diabetic in this life, the day is coming when there will be a sufficient fix on it and I think I will be there in line for that.