Saturday, March 28, 2015

Good Morning! Spring has come and gone and we're back to winter! The weather the first part of the week was glorious, in the upper 70s. It was warm enough for capris and flip flops. This morning it is 32 and only supposed to get into the low 40s with some rain. But I think this is the last of the cold, at least I hope so.

We got good news and bad news from the hematologist this week. The good news is...Bill does not have leukemia or any other blood disorder. He said one of tests that was done can find a single leukemic cell out of 100,000 and it didn't show any. The bad news is...we still don't know what is the cause of the young white blood cells showing up. As Dr. Smith explained to us, there are several stages of cell growth and the youngest cells are always found in bone marrow. The most mature cells are the ones found in the blood to fight infection. All of the others should stay in the bone marrow, but some of the intermediate cells are showing up in the blood. He, Dr. Smith, thinks that an infection somewhere, or inflammation of some kind, is the cause of this and is now referring him to an infectious disease dr. He said that some of the meds Bill is on will fight most infections, but some of the meds make him susceptible to other infections. There are very few ID drs. in our area and he suggested seeing one at Mayo, since we are going to be there in May anyway. He is also going to keep checking Bill's blood monthly until we find a cause.

So, I spent some time on the phone with Kim, one of the transplant nurses who was covering for Stephanie, trying to get an appointment set up while we are there. I talked to Kevin, a really nice guy who works in scheduling, and right now we are on standby for a "hold" appointment on May 5th, which is one of the days we already have appointments. This appointment slot won't open until the end of April and hopefully we will get it. Otherwise it will be the end of May before he can be seen and we would have to go back. One of the reasons we are trying to get it worked in is because of the golf tournament. We can't extend our hotel room, and probably can't get a room anywhere else. We had talked about going to Bill's sister's in Clearwater if the wait was going to be just a few days, but, we're keeping everything crossed that can be crossed that we will get worked in.

I thought of something the other night that may seem rather strange. Since the transplant I have not listened to Bill's heart. I haven't put my head on his chest or back, not because I was afraid to, just didn't think about it. I don't even know if I've put my hand on his chest to feel it. Does this sound odd to you? Everyone reads stories of people wanting to hear and feel the new heart beat, but I don't seem to have that need. To me he's still the same Bill, or at least the same except for the stroke changes. I remember reading an older post (really older post, one of the first ones after he was listed in Memphis) about how I felt about the transplant, and I compared it to replacing a car part. There was none of the emotions of awe or gratitude or humility of knowing that someone had to die for him to get the heart. And, apparently, that still holds. It doesn't mean I'm not grateful to our donor, because I am. I just don't have the "mushy" gratitude. It's still like a car, he needed a part replaced, it got replaced, and now he runs better! Call me weird or callous, that's just the way I feel. Or maybe I don't want to let myself feel those emotions because I'm scared of them. Hmmm, something to ponder.

Well, that's it for this week. It's time for meds, our neighbor should be here shortly for coffee and some Buddy Dog time, then off to Walmart. We're having a carry-in dinner after church tomorrow and I need to buy the things for my dish. Have a good week everyone!

4 comments:

  1. Glad he doesn't have leukemia, but sorry y'all still have a lot of hoops to jump through.

    Have a beautiful weekend, what's left of it!

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  2. Oh, meant to ask, have you ever heard of an ION test, by Genova? Curious if that might be beneficial.

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  3. No, haven't heard of the ION test. I'll check it out and see.

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  4. Just thought maybe, since he is on so many transplant medications, this might show where certain deficiencies are, that replacing might help. Also, if they did a serum magnesium test, that won't show what is available in the cells, where it needs to be, it only shows what is in the blood. https://www.gdx.net/product/ion-profile-nutrititional-test-blood

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