Thursday, June 1, 2017

There is really no reason to write other than I’m getting impatient and antsy and stir-crazy.  This is one outlet that I use to calm me.  No one has to read this blog or post.  This post will probably bore you.

I need to go upstairs, wash up, get dressed and think about when to go for a walk.  I took my pre-walk Tramadol ½ hour ago.  I updated my list of questions for Dr. Tsai and decided to write these random thoughts floating around in my mind.

Ups and downs.  Good days and bad days.  Full of energy or too fatigued to do anything. Feel good one minute, then feel like crap the next minute.  Much of the time there is no rhyme or reason for all this.  I get some blood one day.  It usually makes me feel better the next day.  Other times, I feel worse the next day.  One day I can walk .6 miles (in 2 separate trips) with little trouble.  Other times I struggle to walk .3 miles with many stops to rest and let my aching muscles relax or to catch my breath.  I refuse to cut any single walk back down to .2 miles.

I’m waiting to find out what comes next.  I didn’t see Dr. Tsai on Tuesday (5/30), but will on Friday (6/2).  I am writing this on 6/1.  Dr. Tsai scheduled an echocardiogram for the Tuesday that just passed.  Why?  I don’t know   I found out about it when scheduling called and said I have to come in for the test.  Getting the test could mean that things are moving along and they just want to compare the results against previous tests.  Or, it could mean they see something in the lab tests or my struggles to walk or breathe that warranted this echo.   When you’ve had cardiac issues in the past, you don’t like medical people ordering heart tests.  Cardio signed off on the transplant before.  Let’s hope they are still okay with it.  I will find out Friday.

The appointment time was in the middle of my scheduled time in High Dose.   I go to High Dose, get my labs drawn and dressing changed.  The lab results come back and I could use some blood.  Instead of ordering up the blood right away, they have to wait until I come back from the echocardiogram, which of course is in another building.  Because of the time of day, I only get one unit where I might have otherwise got two units of blood.  No real big deal.  but now I will probably need blood on Friday.

Yesterday, after dinner, I sat down at the computer to check my mail.  Suddenly, my nosed poured blood.  I hope it will come out of the shirt I was wearing.  No warning at all.  Not even a sniffle.  It stopped, with minor pressure, in about a minute.  I didn’t go for the evening walk I was contemplating.

I’m also not too thrilled with how some things are done.  Yesterday, Wednesday, Cyndi called the pharmacy to get my next dose of Granix scheduled and delivered.  She was told that the dosage was being reevaluated and to wait until I see Dr. Tsai.  It’s a minor thing but it would have been nice to find this out from Dr. Tsai’s office instead of the pharmacy.  I’m hoping that they will be cutting back on the dosing since it has been working so well.  This is about the only thing that has been working well, even though I am having a harder time finding a bruise-free area to inject myself.

Well, I’m now dressed and Cyndi and I went on the walk.  I was miserable and almost felt like giving up on it, but I didn’t, thanks in a large part to Cyndi’s encouragement.   My back muscles kept tightening up today, faster than normal and they took longer to loosen up when I rested.  I got the .3 miles in.  When we got home Cyndi, put some Ben-Gay onto my aching muscles.   I’ll try for a walk this evening, but maybe the .2-mile route.

It’s time for lunch.  This is it for this post.  If it was too boring, I warned you at the beginning.  Now, I’m bored writing it, with adding any more words to this mostly unnecessary post.

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