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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