So, how am I doing, you ask? Well, it's a whole lotta ups and downs. If I look at the whole picture, I don't think the ERCP did me any good. There were a couple days last week where I felt relatively good, but that only happens when I lie in bed all day. If I get up to do anything (like go to the Dr's office), then I'm down for the next day or two. The horrible nausea is the worst, and it's a constant juggling act. Eating gives me pain and nausea, but an empty stomach feels almost worse. So I have to try to keep a little bit in me. I usually try to time eating for right after I've taken my nausea medicine. I'm going to call my Dr's office in the morning to see if they'll call in some phenergan suppositories. Not glamorous, I know, but at least I won't be throwing up the medicine that way. Food smells always make me so nauseous, so Lew has to close the bedroom door and open the door to the outside whenever he cooks anything. I'm so done with feeling like this! I actually had a dream last night that I went to a regular Dr's appt and they told me that they had an opening right then for the TP-IAT, so they wheeled me back to the OR. You know it's bad when you're actually eagerly awaiting a transplant surgery!
As far as progress, there's not a whole lot, but there is some. Renee from UMC said she will call me on Monday to discuss the whole process of testing and insurance approvals. Please pray that my approval comes through quickly, and it's for the whole thing. Some insurance providers will pay for the pancreatectomy but not for the islet transplant. It really makes no sense to me, as without the transplant you have a 100% chance of becoming diabetic, which is VERY expensive to the insurance companies. Not sure what their logic is there...I guess some of them view it as "experimental". Anyway, I need to have an EGD, which is an upper endoscopy. No cutting, and I hear it's a breeze. There they will look at my stomach and other organs to make sure there's not something going on there. I need another MRI, using Dr. Rilo's new algorithms to view the pancreas and liver to make sure the liver is healthy enough to house the islets. And I'm sure there will be lots and lots of blood tests. I did finish up with the 5 day glucose monitoring. The gadget on my side measured my blood glucose every 5 minutes, so now I have to send it back and the Dr will download the data. I also had to take my blood sugars 4x a day. Those should ideally be somewhere between 80-120. I had one low of 56 and one high if 122, but otherwise everything was pretty stable which is a good indication that my islets are working well. I had asked about tube feeds at my last appt to try to avoid the pain that comes with eating. Dr. Rilo didn't want to do TPN (total parenteral nutrition, which goes in via IV) because it can damage the liver. They could possibly insert a tube that they put in past your duodenum so that your pancreas isn't stimulated, but Dr. Rilo said he would rather just accelerate the surgery. I just hope that he can - soon! I also need to meet with Dr. Gruessner in one of his Wed clinics, but I'm not sure if it will be this coming Wed. He is the chief of surgery and will be the one actually removing my pancreas. Dr. Rilo will then take it to the lab to harvest the islets. This is a 4-5 hour process, so in the meantime, Dr. Gruessner will be doing my gastric bypass :-) and then just hang out doing a tap dance or something until my islets are ready. Maybe I should buy him that game Operation to keep him busy! So, hopefully I'll know something more tomorrow, but it's probably not likely. I haven't felt very good today - praying for a better tomorrow. Since my ERCP, I have the same left sided pressure like someone is blowing up a balloon inside of me. But now I also have right sided pain like someone stabbed me through the ribcage with a serrated knife and is sawing away at my insides. Fun. I never had that before, so I don't know why it has popped up now. I think Dr. C cut my biliary duct deeper than anyone has before, so maybe that's it.
Well, that's enough whining for one day. I promise to keep everyone posted as soon as I know anything different. Thanks for hangin in there with me!
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