Chicago Marathon 2012

Chicago Marathon 2012
You Can Still Run For A Cause!

Sunday, March 16, 2008

Pre Pre-Transplant

In response to requests for more detailed information about the whole islet transplant experinece I decided to write in installments so I don't bore myself , and anyone that might happen upon my blog, to tears.

Ih, I should have been doing this all along, but alas I never figured on anyone outside of, well, myself and a few of my dorky diabetic friends being interested, so I failed to keep written accounts of the months leading up to and the two years after my transplant and here I am trying to remember it as it all played out. Wish me luck on accuracy and all that jazz. I'll do my best.

Names have been changed to protect the innocent.

I'm not going to sugar coat it. This is what happened as best I remember it. If you're interested in islet transplantation keep in mind that if we don't see the ugly side of life we can't appreciate the not so ugly right? It wasn't easy. It was expensive. I experienced pain and a whole lot of barfing and in the end it was still worth it.

Anyway enough rambling, here goes...

About a year and a half before I had my transplant I was doing what I do best and that was researching random interests on the inter tube webby thingummy. At that time my current obsession was the Edmonton Protocol and islet transplants. I was interested specifically in how the heck they managed to isolate the beta cells of the pancreas with out destroying them. Anywho, I came across this website that is sadly now defunt (btw diabetesportal people please please come back! I miss your wealth of information). Said website had a list of centers in the US that had islet transplant studies underway and a registry to fill out if you wanted one of them to contact you. yeah yeah, i'm a sucker for online forms and other such cheep marketing ploys so I filled it out thinking I might get emails and I might be able to ask questions about the whole protocol thing. boy did I get email!

Among emails from other peoples regarding transplants, UIC's Transplant Co0rdinator/Nurse Extraordinaire (hence forth know as TCNE) emailed me and wanted to know if I was still interested in islet transplant sudy. I was only I didnt think I would really qualify because I have situs inversus of the abdomen or more accurately situs ambiguous with poly splenia syndrome. Basically, my momma birthed a mutant with backwardly innards and too many spleens. I was certain they wouldn't be able to do the procedure but wanted their information anyway tyvm. Well, TCNE emailed me back and said situs backwardus was no big deal and did I want to move forward please call. So I did and the conversation went something like this:

TCNE: what type of diabetes do you have?
ME: um type 1?
TCNE: how long?
ME(counting on fingers):25yrs
TCNE:how much you weigh?
TCNE: how much insulin you take?
ME:um, varies, around 35units a day
TCNE: do you have lows and how often?
ME: (thinking, aren't lows normal?)yeah, 3-5x a week.
TCNE: good (me thinking 'good??') do you have symptoms?
ME:not really, sometimes, but not usually
TCNE:how do you know you're low?
ME:I test my blood sugar?
TCNE:ever need help when you're low, go to the er or use glucagon?
TCNE: good(again me????)

so it went on like that for a few minutes with her being more eloquent then I just gave her credit for and me being generally confused by her "goods", which I now understand meant I, at that point hadn't been excluded from the study.

She then said I looked like I might be a good candidate and could she send me more information and some forms to fill out. (information??? forms!!) Yes, thank you!

So I got my information and form and procrastinated in getting them filled out for a couple of months until TCNE finally called and asked if I were still interested. Sometime around June 2005 I faxed the forms back and got a call saying I looked like a good candidate except that I had a history of pancreatitis and would I see one of the doctors in Chicago in order to get clearance for the procedure. Hrm, okay. So I did, he said no problem go ahead and eventually we made an appointment to meet Dr Endo with the islet study to talk about it more in person. That happened in September 2005.

come back tomorrow or the next day and I'll tell you all the riveting story of blood work and tests and the slide show I got to watch! woo fun! meanwhile I have laundry and a small green bird begging for attention so I'll have to get to the rest of the story later...


jill. said...

Thank you for posting about this. It's very interesting to read about the whole process from the patient perspective. I actually work for the company that maintains CITR (the islet transplant registry), but I work on infectious disease protocols. I have always been interested in the specifics. Looking forward to the next installment :)

Anonymous said...

I am anxious to hear more...both about your transplant experience and your littlegreen bird.

..M.. said...

Hey cool! Glad you're sharing this with us :) I shall be waiting impatiently for the rest!