It’s been a couple days since I updated. We don’t have internet where we’re staying, so we have to get by while we’re at Mayo. And that waiting time has mostly been spent watching shows.
Monday we began at the lab, which you know if you read the last post. After that we headed up to Dr. Kudva, an Endocrinologist (diabetic doctor) in the transplant unit. He talked with us a while about Mike’s medical stuff and said, “Oh, I see,” waaaay too many times. He was concerned with Mike’s feeding tube and possible infection after a transplant because of the immuno-suppressants he’d be on. He said he’d talk to a surgeon about it. Other than that, he seemed pretty on board with the transplant. Yay!
After that we talked with the transplant coordinator nurse. (My computer is irritating me. It keeps jumping me up a paragraph so I’m ping in the middle of old stuff I wrote, then I have to move it. Over and over.) She went through a power point of the transplant process, risks and benefits, post transplant medicines, etc. It was very helpful, but Mike and I both almost fell asleep! The waiting time for a pancreas is only 6 months to 2 years, which I thought was not bad! And it’s not a numbered list. It’s more like the lottery. When a pancreas becomes available, they do a national search for a perfect match. If there is none, it goes to the person in the region that’s the closest match.
After the transplant he’ll have to be in the hospital for a week, then near the hospital 4-6 weeks. With most people, the first week out of the hospital he’d go in every morning for labs, then again later in the day to see the doctor. The second week he’d start going M, W, F if he was going ok.
There’s a transplant house that sounds pretty nice 4 blocks from the clinic. It has community kitchens and entertainment rooms with pool tables, tv’s, etc. Their brochure says they charge a small fee. The only stinky thing is no visitors under 17 years are allowed because everyone there is on immuno-suppressants. So Ki couldn’t visit. Also, he’d have to have someone there with him all the time (as part of the house rules). We’re going to tour it this afternoon. It’s required before you can stay there.
Dr. Kudva was very surprised Mike had never had an EMG to test his neuropathy. He set up an appointment for us to meet with a neurologist about the neuropathy. At that point, we were done for the day (a bit before noon), had an afternoon appointment Tues., and a morning appt Weds. We decided to see if we could get in to the Weds. appt that afternoon, so we went over and waited (much to Mike’s chagrin) for 4 hours. And left cold, tired, and hungry with the exact same appointment time.
Tuesday, we slept in. We had a 1:30 appointment with Dr. Szarka, a gastrointestinal doctor. Mike was very impressed with him. He knew a lot and mentioned procedures and treatments no one in Ames had. He said they can place the J tube endoscopically, which Ames can’t. They have to do full out surgery. Also, he talked about a treatment that can help the stomach and colon muscles work together better to get stuff moving through, if that’s an issue. We waited a long time for an appointment time for a small bowel follow through including the colon, which he hadn’t had before. When we got the time, they told him to go off all meds, including his pain meds. We questioned going off morphine cold turkey, so she went to ask. At that point our schedule was a new 4pm appointment, neurologist Wednesday, nothing Thursday, first part of the small bowel test Friday, and second part Saturday. She came back and said Dr. Szarka had canceled the test and looked like he was thinking over what he wanted to do. We were supposed to go back Wednesday after the neuro appt.
We weren’t really sure what the 4pm appointment was for. Something GI related Dr. Szarka had set up, so we went over and waited half an hour. It turned out to be the PEG (his tube site) nurse. He’s been having pain for about a week and lots of bleeding for a few days, and Dr. Szarka had talked about getting it cauterized. So she looked at it and cauterized it. Ouch! I’ve had my nose done before (nose bleeds) and it kills. She gave us a couple extra silver nitrate sticks to use in 7 days, and a script for a cream he can use twice a day for two weeks instead if he wants. He’s also supposed to keep it dry. Apparently if it stays moist, skin can grow rapidly and cause the problem he was having. Good to know, since I don’t think anyone had mentioned that before. She said he was taking very good care of it though, so that was good!
We finally headed back “home” to relax. We’ve been watching some live tv, which is really weird after 3 years of not having it. (We usually just watch stuff online.) We got to watch he 2 hour House season premier on Monday and CSI: Miami (no my favorite…we really don’t like Horatio!). Then last night we watched a brand new Hell’s Kitchen and a couple new shows we hadn’t seen before. It wasn’t really as exciting as waiting for your show to pop up online, though. We just happened to find them, since we don’t really know when stuff is played live.
Anyway, today we have a neurologist appointment at 7:45, then we’re supposed to go back Dr. Szarka to see what he’s decided to do. As of now, we’re done after that, but I’m sure tere will be more tests added. When we’re done with everything, we have to go back to Dr. Kudva so he can see whatall the other dudes figured out. It’s nice to have doctors who don’t seem puzzled by Mike. They actually have ideas of what to do.
So. Now that it’s officially time for me to wake up, I guess I’ll go shower. I wrote this this morning at 5 something because I couldn’t sleep (in general, and because of the insanely loud snoring in the next room). Also, we don’t have internet here, so I’m pre-writing, then I’ll post it while we wait. That way Mike’s not dead from boredom by the time I’m done.
In general, you can see mini updates on my facebook while we’re at Mayo. It’s not a ton of info, but it tells when we’re waiting and when I’m bored…