Monday, December 3, 2012

The Waiting Game

Pancreatitis can be a tricky thing. For some people the pain is constant, leaving them unable to work or go to school. I've heard of people spending months in the hospital, or basically feeling like they are constantly going back and forth between home and the hospital. For other people though, it can come and go. I'm fortunate enough that it can be years in between pancreatitis flares serious enough that they require more than me taking care of them at home. We had a system where I'd go and get my pancreas checked out by ERCP (Endoscopic Retrograde Cholangiopancreatography - Kind of like a colonoscopy but going down your throat so no horrific prep) about every 3-4 months. My doctor would clear out any new stones that happened during that time, put in a new stent to help keep my pancreas open, and I'd wake up from the procedure with a happy pancreas for about 3 months. Once we figured out that I was allergic to the contrast in the procedure we were all even happier.

Alas however, all good things must come to an end, and this summer marked the end of me being able to get away with minimally invasive pancreatitis management. I ended up in the hospital twice for my pancreas (Once involving a psych evaluation, but I'll save that story for another time), and the words "I think we have reached the end of what we can achieve endoscopically" were uttered and conversations about surgery were had. We determined that there would be a referal to the surgeon, and that in the meantime we'd continue on as we had, with ERCPs every few months.

Then, there was the disastrous surgeon appointment. After waiting 2 or 3 months to get in to see the surgeon, within 5 minutes the resident informs me that the chances of this procedure (A Puestow) being successful for people like me are about 50%. On top of that only 50% of people who initially experience any relief experience relief beyond 6 months. On top of that the healing time for most people is 8-10 weeks, and there is plenty of reason to suspect that for me it would be longer. So, not exactly strong selling points. I left with a strong sense of not having any clue why any of my doctors would think that it was a good idea to put me through this. I had countered with just pulling the whole damn thing out of my body instead (While you need insulin and enzymes to survive, they can be provided synthetically) but I was firmly told that that wasn't an option for me because I am already diabetic (If you have pancreatitis for too long it can damage the nerves surrounding the pancreas so it won't stop the pain and makes the instant diabetes ridiculously hard to control). If you aren't diabetic there is a procedure that they will sometimes do instead called a Total Pancreactomy with Auto-Islet cell transplant. I however, don't qualify. Leaving the surgeon's office feeling very strongly like he could keep his surgery he invited me to go have an MRI, and we'd come back and talk some more. We could take our time.

As always, irony was not on my side. By the end of the week I was back in the always familiar hospital bed. Over the next two months I spent altogether about 30 days in the hospital. Some perks were that the MRI was done inpatient (Try trying to find a nurse to help you get out a snug piercing during morning shift change), I had more ERCPs than I could ever want, and pain meds were adjusted to something resembling an effective dose. Cons were ending up back in the hospital with a white cell count of 26 for viral pharyngitis (A sore throat), bad pain management, being in the hospital and feeling like crap.

The best news was though, that one day my doctor sat on my bed at like 7 am before a therapeutic endoscopy conference and explained to me why I should have surgery. I explained that it seemed like a lot of risk and a lot to go to for a 50% chance at it helping anything. He explained that how someone responds to ERCP is a really good indication of how you will respond to the surgery, and since I do really well after the ERCP, and I just need them really often and lately it hasn't been the most successful on its own, that makes me a really good candidate.

So, now I've been waiting to see the surgeon again. I see him again tomorrow morning with a slightly different decision than telling him where he can put his scapel. It wasn't the easiest decision, but I think it is the right one for me right now. I want to go to school, I want to be able to work. I know I will still be sick and this won't cure everything, but it is a shot at being sick less, or having it be less severe. Right now I don't know if I can go back to school in January. I already lost one semester to being in the hospital. So much depends on staying out of the hospital and when I might have the surgery. I've spent a lot of  time being worried about when this is going to happen, and how long things are going to be on pause for. Now tonight I feel like I'm just ready to know. I feel like I now what time of year would be good for m to have surgery, and we'll see what happens tomorrow. No matter how it goes at least the waiting game is over.

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