Guest Post: Islet Transplant Story by Jason Turner
I am a islet transplant patient, 5+ years insulin independent, and coming up on 28 yearswith diabetes – diagnosed March 3, 1983. I was selected for the transplant program in Edmonton Alberta, which is the center that has the most experience in the world in islet transplantation (over 130 patients as of Fall 2010). You can read more about my islets and my life by clicking the link. I am a strong advocate for research in general, and islet transplantation in particular. I have done many presentations for JDRF here in Atlantic Canada, and I sit on my local walk committee.
When my endocrinologist suggested to me that I may be a good candidate for an islet transplant, at first I did not really know what to think. I believe that I just sort of agreed with him and left. I think that is about the point where I realized how serious things were. I was aware of the transplant – living in Edmonton especially – but I never before felt I was that sick – and here my doctor was telling me – yes you are that sick.
So I applied to the program – expecting the entire way to be turned down. I did not want to get my hopes up too high, only to not qualify for some reason, or find out that I was sick, but there were others who were more sick who needed it more then I did.
So the first step is filling out an application form found at islet.ca. This is a 29 page questionnaire and 4 weeks of blood sugars – paying special attention to your lows and what not.
After that – you send it in and wait.
Then someone from the program called me, and set up some lab req’s – to get some basic numbers. After that – I was called in, and asked to come in for an assessment. That was the first time that I got to meet the programs doctor, and meet some of the people involved there. I remember being asked what I would want out of a transplant – and I responded all that I really wanted was stable sugars – and not to have numbers like on a yo-yo.
Well that must have been a good answer, as that afternoon I was invited for the full assessment – more hoops to jump through!
The full assessment was 2 weeks of testing of various things. More blood – 23 tubes in one sitting I recall! Bone density scans – Stomach Emptying study – eating cold radioactive eggs – yummy (at least they allowed ketchup) – Glucose tolerance test – arginine infusion test(testing c-peptides) – coronary angiograms – loads of fun! about 37 different ones altogether!
After that it was a waiting game again. I think I waited 6 or so months or something along those lines. At the time, lots of people were applying to the program, so it took a while to get through it all. Eventually though, I was contacted and asked to come back in to talk again. This time I got to see Dr. Shapiro – the big man on campus in the world of Islet Transplantation. At this time it was all laid bare. The pros. The cons. And it was all my decision.
The way I decided was to write out all the crappy things I was dealing with at the time. And then I took the 3 or 4 worst possible side effects of the meds – and wrote them on the other half of the paper. I looked and stared at that piece of paper for a time, until I decided that a) anything was better then what I was living at the time, and b) if it doesn’t work – I am simply back to where I started – nothing ventured nothing gained. So I called my nurse coordinator, and told her to sign me up. I think I had to go into the office again, and we went over all the details again, making sure my chart was up-to-date, and all my contact information was correct. This would have been in September 2004. They told me that it could be up to 2 years until I was transplanted – as my blood type is O+ – I was in the largest ‘pool’ of people waiting for a transplant – but that ‘pool’ also got the largest number of pancreases coming in for isolation.
The waiting list for a transplant is not necessarily a strict list I was to discover. When cells become available – they evaluated a few factors – such as where the patient lived, body weight – as they use Islet Equivalent / kg (IE/kg) as a deciding factor. The team doing the isolation generates a list of people the cells should be most effective for, and then someone makes the final call, and a transplant doctor or nurse calls you.
I ended up being called on July 12, 2005 – and the my life and my islets have been a whirlwind ever since!
You can follow Jason on Twitter @Jason_Turner
To read more about Jason’s journey before and after his Islet Transplant click here.