April 13

Well, MN gave me a date of April 13. 10 weeks away. It's pretty disheartening. I know, I know, it IS a date. But I've been home on disability for 10 weeks now and I just can't imagine doing it twice over. So, we're waiting to see what Tucson says they can do. They might even be able to give me a Feb date. It's just more wait and see...

I'm really struggling with what to do now. I listed out the pros and cons for each center, not that they're all weighted equally, of course.

MN Pros
- lots of experience; they've been doing this procedure since the 1970s so they know what tubes to put in to control nausea, pain, nutrition, etc and how and when to start pushing you to walk, eat, or rest
- Dr. Dunn is meticulous and has an incredible eye for detail
- world class lab where islets are harvested
- hospitalization will likely be better (they know how to take care of sick people)
- pain control; I've heard people say they had NO pain after surgery in MN. AZ tells us to expect the worst pain in my entire life for the first 2 days. (Of course there's no promise of either of those happening with me at either place)
- UMN is willing to try to fix the nerve damage along my scar from my splenectomy; UMC wants me to come back for another surgery after the TP-IAT

MN Cons
- 10 week wait time
- my support network is in AZ
- my babies are in AZ
- logistics of traveling, finding a hotel/apartment, and who will stay with me when
- travel costs
- follow-up care; yes, I would plan to go there for 3 month, 6 month, and 12 month follow-ups, but who do I see if I have complications?

AZ Pros
- Rilo and Gruessner seem very experienced. Each place claims to have more experience than the other, so I don't know, but they're clearly passionate about their work.
- Earlier surgery date?
- my support network is here
- easier follow-up care for routine and emergency issues
- no hotel or travel costs

AZ Cons
- new facility; there may be glitches they haven't worked out yet
- drs have less experience doing TP-IATs (at least in this facility)
- not willing to mess with my splenic scar
- quality of care; I have not had any good experiences at UMC. With the TP-IAT I would be on the transplant floor with nurses familiar with patients' pain after this procedure, so the care might be better, but who knows...
- responsiveness; it's hard to get anything done or even a call back, and wait times for appts can be close to a year (at least with my last GI). If I DO hae any complications, will I be able to get an appt?

So, as you can see, it's a tough call. If Dr. Sutherland was still at UMN, I think the decision would be easier. Now that he's gone, I can't say that one team has more experience than another. There's a big difference in how MN treats medical patients vs AZ, though I've not had any experience on the transplant floor. Louise from MN assured us that Tucson is a good facility and we will be well taken care of there, if that's where we choose to go. I'm so torn right now. I would REALLY love to hear your thoughts and advice on this. I know everyone will support whatever I choose to do, and I am so grateful for everything you have done already. There are no wrong answers here and I would love to hear what you would do and why. Please help me make this life-changing decision!