Thursday, June 1, 2017

Clinic Update - 6/1/17

Today's clinic visit included the usual labs, chest x-ray and spirometry. I also had a CT scan and Ventilation Perfusion scans.

On a positive note, my lung function was statistically the same as last week.  This is the first time that it hasn't fallen in consecutive visits.  Now, it was only a week between PFT's, and I have been working on conditioning this week, but no notable loss is great news.  I'll take it.

The x-rays looked good.  The results of the scans were not in yet, but I could see changes in my VQ scans.  Surprised the tech that I could knowledgeably talk about what was showing on the screen.  I've spent a lot of time looking at my past VQ scans recently.

When I sat down with the Team, we performed a trend analysis on several data set and found some interesting information.  We looked at immune system function, white blood cell count, medication dose history, PFT results,  tacrolimus levels in my blood, time switching from brand name to generic meds and other lab results.  Other than PFT's and other indications of rejection, the individual labs and tests were all in a standard and very acceptable range.  But when we overlapped the charts, we found that at the same time as my problems started, trends in immune system activity and medication levels were also moving.  My tacrolimus (Prograf) levels are in the correct range for individuals two years post transplant, but, obviously too low for me.  Same thing with my immune system.  It is high normal for someone at my stage post transplant, but too active for me.  So we are increasing my Cellcept and Prograf daily doses.

More meds = more side effects = more work on my part to counter the side effects.

I think I remember this line from Old Yeller, but others attribute it to John Wayne:

"A man's got it to do what a man's got it to do."

I should have the results from the scans on Monday or Tuesday, then back to clinic in two weeks.  Hopefully we'll see some improvement in lung function.

On a side note.  A couple of the docs on my Team went to the ATS annual meetings recently.  It's fun to see them re-energized.  They have one heck of a workload and I'm really impressed with their empathy and knowledge of us individual patients.

Edit to add PFT results for the past year. Everybody likes pictures :)


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