Here's my new pancreas! And this one is happy - probably because it's already outside my body! :-)

Hello everyone - sorry it's been so long since my last update. Everything moves so slowly with this disease. I think it was Fri, Jan 6 when I went in to have my stent pulled. But when Dr. C went to pull it, it was already gone. Now, we assumed that means that it passed on its own, down through my intestines and out. But, we don't REALLY know for sure because nobody has seen it with their own eyes. Last Tuesday, I ended up in the ER because my pain had gotten so much worse, and it was different from my "normal" pancreas pain, and I was running a low fever. Lew was on travel, so I had my mom come down for a few days and she got to be the lucky one to take me. I think it was 3 hours for them to get me back there and get an IV started. It felt like forever, though the nurse told us the average wait time was 6-8 hours just to get past triage. Just ridiculous. So, they wanted to take another xray to see if the stent was lodged in there somewhere and that's what was causing so much pain. They finally managed to start an IV (never easy for me) and gave me a sadly weak dose of pain meds. They gave me a pill for nausea, which I had at home anyway. I mentioned to the Dr on call that I just wanted to get some fluids in me and see if the meds helped. She says, "Oh, I didn't order any fluids for you, but I guess I can. Do you want IV fluids?" Seriously? What Dr would start an IV on someone who's been vomiting, but doesn't order IV fluids?! I really don't know how people are still alive with this shoddy medicine! Anyway, long story short - they didn't see the stent so sent me home that night. I think we got home around 1:30 am.

The next day, I was so so sick. Sicker than I've ever been, I think. I think it may have been just a bug, but it knocked me down hard. Thank god my mom was there to watch the kids and to make some homemade ginger tea to help with the nausea and vomiting. I was so sick that I had to keep a trash can next to the bed because I could barely lift my head. Since then, I've been much better. I'm still extremely nauseous but am doing better with the pain. I have a patch that slowly releases medication for 3 days - my Dr increased the dosage on that and I think it's gone a long way toward controlling my pain without a whole lot of breakthrough pain meds, so that's a very good thing! It's still a LOT of narcotics...hopefully that goes away once I have the TP!

I have an appt with a pain management Dr on Feb 8. They're not planning to change anything I'm currently on, but will manage everything so there's one single Dr who looks at it all. Dr. Rilo said that it takes about a year to get off all the pain meds. I guess it's a combo of post-op pain and "phantom pains" that takes so long. Scary. OK, back to upcoming appts - I also have an MRI scheduled for next Sat 1/28 - that's part of my pre-op testing required for UMC. Then Lew and I leave on Sun for MN. I am scheduled for an EUS on Monday 1/30. They are also doing Pancreatic Function Tests (PFTs) at the same time. This is where they stimulate my pancreas with secretin and then take fluid and tissue samples over a period of about 2 hours. I'm guessing I'll be pretty miserable at the end of that day. Then on Tues they're doing blood work and Boost Testing, where they have me drink a Boost (like an Ensure shake) and then draw my blood every 15 min to look at how my blood glucose reacts. This will indicate how good my islets are functioning right now. I'm also meeting with the Transplant Social Worker and the Transplant Surgeon that day. On Wed 2/1 I have an MRI, then meet with Dr. Freeman, who is the GI/General Surgeon. He's the guy who saved my life in 2008, so he's near and dear to my heart!

That's all I know for now. I think UMC is trying to get me in for some tests next week, but I don't know if they'll be able to. I still need an upper endoscopy and some blood tests here in Tucson, plus meet the Transplant Surgeon, his PA and the social worker. Lots of people to meet and tests to do! I'm really hoping I can get this surgery done and over with by March, but am not getting my hopes up. Actually, the beginning of March would be good because we have a ski trip to Telluride scheduled at the end of Feb. Obviously, I will not be doing any skiing this season :-( but I hope that the rest of the family can still go. It's SUCH a fun trip and I don't want to ruin it for the rest of the fam. I am kinda bummed that I won't get to ski this year. Last year I was starting to get a bit better and taking jumps and steeper slopes, just tearing down the hill as fast as I can. I got a cool new helmet with headphones integrated in, so I could jam to my tunes feeling the crisp, cool air on my face. Oh well, there's always next year!

One last thing - I'm not sure if any of my coworkers read this blog, but I wanted to thank you all for the really nice cards that you sent me. They mean so much to see all those kind words from everyone. I was feeling a bit down before I left work - like I wasn't really making the impact I'd hoped to in my job. And now that I'm gone, everybody else's lives just go on as usual. To see all of the people who signed the cards and wrote such kind words, it really just means so much to me. Maybe I did make a difference to some people, yk? It's just hard on the old ego when you're sick and really have no value to anyone. But I know I'll get back to normal soon enough, and just long for the days when I could lay in bed all day and not have to work, lol! :-)