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Old Wed Jun 4, 2014, 04:21 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
A very slow but very good recovery from SAA.

Hi all,

The purpose of this post is to provide encouragement to anyone with severe aplastic anemia, waiting for a response from the ATG/cyclopsorine treatment.

June 7th will be the 2-year anniversary of the date I *should* have responded to the ATG, i.e. 3 months after receiving the treatment. But on that date in 2012 I was still transfusion-dependent, with an ANC that would drop well below 500 without frequent neupogen shots. My iron overload was about 10x normal levels (ferritin ~3000) from all the transfusions, and I was on chelation 40 hours a week while sleeping, with much of my waking hours and most of my energy dedicated to frequent hospital visits.

I understood that statistically most responses to ATG occur within 3 months of treatment, so with every week I remained in that state the chances dwindled that I'd have a decent response. I'd sit in the clinic waiting room awaiting my tri-weekly blood tests, terrified at what they would (or would not) show. I was depressed, frightened, exhausted. I would read Marrowforms at that time, but never post. I figured my story wouldn't be encouraging to others.

Fast-forward to the day before yesterday, and for the first time my CBC indicates I'm no longer anemic - Hgb 14.4, and my platelets are normal at 154. I'm still usually moderately neutropenic, but even that goes away temporarily to fight off a passing bug, which to date my own immune system has always done without any additional meds. As I taper the cyclosporine, of course there is fear of relapse. But so far my counts have actually improved significantly during the taper.

I still experience some residual fatigue, but that is decreasing. In general I keep feeling better and better. I work full time again. Last week I ran a 10k race with my son. Last weekend after mowing the lawn I felt like a 4 mile run in the mountains. I felt pretty good, so that turned into 6 which turned into 8 miles. Really I am brimming with energy. Maybe this is just what *normal* people feel like, and I was anemic for so long I just forgot?

A strange gift of this awful ordeal is the visceral realization that it's wonderful beyond words to simply be alive and in normal health.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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