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Sunday, May 26, 2013

A Long Week at Mayo Clinic

Hi,

Just had an exhausting week at the 'the spa'.  Appointments from 7AM to 5 or 6PM most days.  Dinner the first meal of the day!  Went for two main reasons; 2nd anniversary heart transplant check-up and Amyloidosis check-up.  Heard some great words like, great renal function (the docs all love my kidneys), hemodynamics are fantastic, normal cardiac output, no further bone loss.

Have a couple of issues though.

Amyloidosis: the blood test marker for this FLC (free light chain) went up instead of down.  I have been on a low dose of chemo for this since November.  I will stay on the same chemo for now.  After a few more FLC tests, we will know if this is a trend.  If it is, we will need a new treatment strategy.

Heart Transplant: I have had more than a dozen heart biopsies in the last 2 years.  Most of the time I had 'zero rejection'.  Twice I had a 1R rejection which they don't even need to do anything about.  This time I had a 2R rejection.  There is a step higher that is a much more serious situation.  But 2R needs some treatment.  They put me on a 3 day 'blast of prednisone' (no sleep at all last night).  They are also increasing my daily anti-rejections meds.  And I have to go back in June for another heart biopsy. 

BP spikes:  The docs are trying to see why I have BP spikes.  For 24 hours I had to wear a heart monitor (no big deal) and a BP monitor (evil, evil machine).  It took my BP every 10 minutes during the day and every 20 minutes at night (that gives you a great 19 minutes to sleep at a time).

As a treat Amy and I went to the Mall of America in Minneapolis on Friday, a well needed day of shopping therapy.  MN has no sales tax on clothing and Amy has the bags to prove it.  I bought socks.

So another set of changes but I have the best docs working on me. 
Thanks for checking in on me,
Margaret

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