God is GOOD!

And that’s putting it lightly. Mike saw a new doctor last week. A neurologist. Last month he had been prescribed some morphine for 1-2 days a week when his pain was too much. It continually builds, then he’d just sleep for three days to get over it. With the morphine, he could take it and forgo the 3 day sleep. But it was morphine. And we know that isn’t ideal.

New Doctor gave him some tramadol to try. It’s not a controlled substance and it’s not addictive. And it worked pretty dang well. Praise the Lord!

New Doctor (I didn’t go and don’t know his name) also prescribed COQ10 and Alpha Lipoic Acid, both supplements. COQ10 was $16 for 20 days worth at Target. I hit up Walgreens and they had a little over 2 months for $42. So about $20 a month. But wait! They had a buy one, get one deal going on, making it $10 a month! (And making the ALA $5.50 a month.) See? God rocks. Pretty cool.

Both of these supplements are being researched and sound amazing! When we get new breakthroughs like this it’s happy…but I also start getting ticked. Why didn’t doctors think of this before? Goodness knows we’ve been to plenty. No point flipping out about it though, it is over and done with.

That’s my exciting news. Just had to share.

chronic sickness

As summer rolls around, Mike is feeling worse. It’s a real bummer. I never really knew that chronically ill people have seasons. But they do and he does. The first 4 years of our marriage, Mike was in the hospital for some part of July (the entire month the last time). (more…)

Mayo Day 3 (& 4 preview)

Here’s another pre-written post. Mike’s back getting a test done and apparently this part of the clinic has no wireless. Sad!

Yesterday we got to Mayo with just one appointment on our schedule (neurologist), then we were supposed stop back by the GI’s desk to see what he had scheduled for us. When we got to the neurologist, the reprinted our schedule and it had more stuff on it.

The neurologist rocked! We don’t even feel like it’s worth it to go back to McFarland anymore. Everyone here has looked at him once and had multiple ideas of tests to try, or meds to try. We saw Dr. Singer, a German guy who was so helpful. He did a very thorough evaluation of Mike’s hands and feet. (We were sent to him for the neuropathy – nerve damage in his feet that makes it so painful for him to walk.) He checked reflexes and how well he could feel stuff (hot, cold, pointy, dull, etc.). As he left for Mike to change he said, “Well, I think we can help you.” After seeing him for like half an hour. So far everyone has seemed like they don’t know what they’re doing and eventually give up on him.

We ended up leaving with 2 or 3 tests to check our how bad his neuropathy is and how well the nerves actually work. Dr. Singer said Mike’s neuropathy isn’t as bad as previous doctors had thought. This doesn’t mean he’s not in as much pain. He explained it like a tv. If the cable is kinked even a little bit, it can make the screen super static-y. It the cable is just unplugged, you have no tv and you’re fine. So if we apply that, if Mike’s nerves are “kinked” even just a bit, he can still be in tons of pain. But if they were totally blocked, he’s be numb (I’m guessing on the second part!). That was a good thing, though. So he already completed his lovely 24 hour urine sample in which he got to carry a jug around with him everywhere. He also had labs drawn right after that appointment.

Then we headed to see Dr. Kudva (endocrinologist/diabetic dr) again. This was added on since the day before when we left. We waited forever and a day, and go figure he walks in after 45 minutes when I finally decide to pull out my lunchable and start chowing. He didn’t do or say much, other than he wanted to do continuous glucose monitoring the rest of the time we’re here. Also, he is very nervous about the tube site and it getting infected if Mike were to have a transplant, especially because of the anti-rejection drugs. He made it seem like it may be a deterrant to him. We told him Mike would be willing to get rid of it in order to get the transplant. It just makes sense, thinking long term. He said he doesn’t want to take it away if Mike needs it. According to him (which I haven’t heard from any other dr. and need to research a bit) gastroparesis (the stomach nerve damage that gives Mike troubles) lessens over time. He said if Mike doesn’t get approved for the pancreas because of the tube, the thing to do would be wait until it lessens enough to take it out, then try again. Stink! We didn’t like that answer.

Dr. Kudva then sent us next door to a nurse (I think) to ge the continuous glucose monitoring set up. This was the only part so far where I have liked Ames better. She had no clue what she was doing and it took forever and multiple tries to sync it! (Barb in diabetic education is so much better.) It’s a small site on his stomach, kind of like an insulin pump site. It’s about the size of a quarter, but thicker. It checks his glucose level every 5 minutes. They’re trying to see how fast his sugars go up and down and what they’re like overnight when he’s not testing. He still has to prick his finger a bunch and chart it to compare. The site in his stomach goes into tissue, which isn’t as accurate as blood. Dr. Kudva said it had a 15% error either way and it lags behind the blood readings a bit.

After that we stopped by GI like we were supposed to do after our first appointment, but never had time to. We didn’t really even need to though. They had added tests and they were already on our newest schedule. We seem to get a new printout at each appointment.

We decided to try to get in early for a test. We have stuff scheduled today and tomorrow, then next friday (Oct. 2). We really don’t want to have to come back. We waited around there for about an hour and a half, but they couldn’t fit us in. Se we went back “home” and rested a bit.

Mandi and her boys drove over (they’re just under 2 hours away) which was awesome! Mike had been getting down yesterday, so I think it was good to have some little boy distraction. And they’re so cute. We hung out with them all evening, then they had to go. Sad! (Thanks for the gum you left, Mandi! It’s delish and I’m chewing it now. Hope you didn’t mean to take it with you. Hehe!)

Today we got up and drove around the ramp forever, slowly going up to 8 (the top) and back down to find a spot. We were a bit late. We dropped off our lovely jug of sample on the way to Mike’s test and now he’s back and I’m killing time. He’s back getting sensory testing done. I’m assuming on his legs. Oh! Dr. Singer also gave him a script for some cream for his feet. It’s pain killers and numbing meds mixed together that he rubs on his feet twice a day. If it works, he can get off the morphine. It also has no side effects! It’s just silly to be on pain killers when it’s such a small part of his body he’s trying to help with them. Plus, they can make stomach issues worse with nausea and such. He was also talking about a drug we haven’t tried. (Remron I think. Just for you, Mother) It’s technically an antidepressand, but really helps with nausea and has a side effect of weight gain, which wouldn’t be bad. (P.S. Mike’s gained about 15 lbs in the not quite 2 months since he got out of the hospital.)

So after this test he’s in, I think we’ll try to wait and get into the Oct. 2 test early again. Then later this afternoon he has a colon test. Won’t go into detail on that one. After that he meets with Dr. Szarka (GI) again. Tomorrow he has another leg test in the morning, then an appointment with Dr. Kudva in the late afternoon. If we don’t get in early for that test today, we’ll probably hang out most of tomorrow trying to get in.

In other news, the couple we’re staying with is having a neighborhood party at their house tonight. Also, there’s a new CSI on. That’s about all I have. My Mike is in a better mood today, after realizing if he doesn’t get the transplant, it’s in God’s hands and we need to pray for his will. I like the better mood and the right heart. And the Mike. And now I’m going to post this (internet magically appeared) and mess around online.

One more thing. My son makes me sad. He’s having too much fun to talk to me on the phone for more than 30 seconds. I suppose it’s a good thing he likes being with his Nana and Grandma, but it makes me sad! Day before yesterday our conversation went a bit like this:

C: Did you go to the library?
K: No! I not at the library.

And that’s about all. Apparently the had just left the library and he was with Grandma watching them make pizzas at Papa Murphy’s. More entertaining than Mom.

The day before?

C: Hi Ki!
K: This Mommy?
C: Yeah, this is Mommy.
K: I playing. Bye!

Little skunk. Oh well. I don’t have to worry about him at all. That’s nice. We have awesome moms!

Mayo Update

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…

Mayo

I have a new laptop cord! The laptop has been out of commission for a while now, due to a broken power cord. It’s really limited my blogging. (The desktop is generally occupied.)

A lot has happened since I last posted. We are currently at Mayo in Rochester for a pancreas transplant consult and GI visit. FINALLY! Mike’s back getting blood drawn, our first stop of the day. Then we meet with the transplant dr and are done for the day. Tomorrow we meet with the GI dr at 1:30 and, as of now, that’s all we have. It’s kind of disappointing to me to come so far and not have all the tests.

Mike’s back, more later.