Bean!

Green Bean sitting on my finger.

Updates on my trip to Chicago and transplanty type stuff coming soon...

For Your Viewing Pleasure

Yay Febreeze. not.

Thanks to the joys or Sirolimus, I have an overly acute sense of smell now. Thats all fine for smelling things like roses and freshly bathed babies, not so much for Smells Like Cat but Uses Febreeze Lady at work. gag

FYI boys and girls, Febreeze doesn't work and last I checked, it doesn't say anywhere on the label "Why shower when you can Febreeze?".

Not eating lunch because I can't get away from the smell is great for my blood sugar though. I was in target range all day....

I go to Chicago next week for follow up. Sadly, I'm looking forward to it. I get a day away from work, and my esteemed co-workers and being on the train for 10-12hrs in a 36hr period, I have license to relax and just do nothing. I can't wait.

They'll be checking my drug levels and A1c. I have suspicions that my A1c will be higher then I'd like. I also need to discuss treatment options for the hideous mouth ulcers I get. They've gotten tiring. It's time be more aggressive about them even if it means the possibility of changing immunosupression medications.

I'm also looking forward to hearing whats going on research wise. I don't always hear anything new but it's interesting when I do. For obvious reasons I don't hear about individuals in the study but I tend to get the scoop on general trends and if I ask, about upcoming projects. I'm a dork. I actually read the entire report put out by the Collaborative Islet Transplant Registry (more then once even!), and Dr. Transplant and TCNE are pretty patient about answering questions I have about it. I've learned more about islet transplant then I ever thought I would when I first started this silly quest.

Soo hold your breath and wait! I'm sure I'll have something to say about it all late next week. ;)

Confused?

Over at Nothing Is Sound, C-M writes about losing and finding a flash drive.

All I'm saying is, that's pretty much how I feel about my mind at the moment. Work is stressful and crayzee has done set in.

Transplant and Immediately Thereafter

May 2006, I had an islet transplant. In previous entries I've written about how I found the islet study I'm in and the pre-transplant protocol and testing. I left off with me being wheeled down to radiology excited and scared witless at the same time.

I was excited because it was something I really wanted, but I was scared because, well, they forewarned me of all of the nasty icky things that can go awry during the procedure and afterwards. And I was wary of the unknown.

In a sad twisted little way diabetes was my friend. I was diagnosed when I was nine. I had had diabetes for 26 years when the transplant happened and while I didn't want the disease, it was familiar. I grew up with it. I understood it. It was what I knew, but I had also watched my mother die slowly from the complications of diabetes and I didn't want to do the same.

I may still, who knows, but at least I know I tried.

Anyway, the procedure was done in radiology under guided ultrasound. They didn't give general anesthesia so I remember bits and pieces of the procedure, but not much. I know someone was checking my blood sugar every few minutes and I remember being aware of my hand being held at one point and being aware of people talking around me. And it hurt. Not the entire procedure, but a few times, I think when the cannula was going in and being removed, I felt it. It was the same when I had the liver biopsy. thump ugh ow! At one point someone asked if I were awake and I said yes. The next thing I remember is being back in my room on the transplant floor.

A few hours later I was given lovely green jello and I started puking. Mmmm. I still can't think of lime flavored anything with out gagging. And thus started my two months of constant nausea and puking anytime I encountered food, the smell of food or anything that had any sort of odor at all. Dr. Transplant called me P.O.N - puker of the nation. thank you Byetta.

The next few days are a blur. In the 24 hrs after I had the transplant my abdomen started hurting and I had some difficulty breathing because I had a hematoma on my liver. The hematoma pressed on my diaphragm and stomach making it difficult to breath and making my nausea more pronounced. I was given morphine for pain which made me even more nauseous and what I remember thinking most is "what the hell did I do to myself? I think I made a mistake!".

The first 48hrs were miserable. They switched my pain medication to Fentanyl, which worked well enough and didn't cause nausea. I became anemic from the hematoma and was given a blood transfusion and eventually I asked to be taken off the Byetta for a few days so I could get the heck out of the hospital and go home. I was in the hospital 8 days. The usual hospital stay after and islet transplant is 24-48 hours.

When I left the hospital, I went to an extended stay hotel for the next two weeks so I could return to the clinic for follow up three times a week, three weeks after my transplant I was home. I returned to Chicago once a week for the next two months.

Immediately following the transplant my borrowed islets were functioning. I went from averaging 35 units of insulin a day with erratic blood sugars to 8 units of Lantus a day with perfect blood sugars for the most part. Over the next two months I was weaned off of Lantus and since July 14, 2006 I've been insulin free.

My blood sugars aren't perfect. I have days that I go over 200 mg/dl at two hours post prandial but my fasting blood sugars are great. According to metabolic testing I've had done since the transplant I would not be considered diabetic. I do however have some impaired glucose tolerance and I tend to go low after eating large amounts of simple carbs but my A1c's are good. My blood sugar is much better controlled with diet/exercise then it ever was on insulin and I haven't had an unrecognized or difficult to treat low since the transplant.

And that was my goal. Better control, get rid of the hypoglycemic unawareness, avoid complications Mission accomplished so far. We'll see what happens in the future. They can't promise anything. I may very well need a second or third transplant in the future and if I do, I'll do it. After that, I may end up back on insulin. I may not. Who knows, we'll just have to wait and see.

In my next installment I'll write about my endless trips to Chicago, my fabulous fall on my face and how they accidentally discovered I had cancer. yay!

I'm working on it. I promise.

My next installment in islet transplants will arrive soon. I promise. I'm having some difficulty with defuddling my brain and remembering exactly how things played out. I spent a week on a lot of drugs and a few months puking and in pain, soo you see how I might have some writers block going on when writing about those weeks.

It'll be here soon.

Maybe this week even.

Meanwhile here's my all time favorite Youtube vid (originally from www.rathergood.com) to rot your brain.



*sigh* I'm a dork, I laugh every time I see it.

Check out rathergood.com while you're at it.