[Gloria J]

‘Good things come to she who waits’ It’s been 3 months now since my last transfusion of PRBC, and 17 months since ATG treatment for SAA. At my one-year check up, I was told I could be re-treated, or ‘wait and see’. I voted for the latter, and am very happy now that I did. My Hgb is in the 9s, platelets have been between 20 and 35 since Dec 08, and my CBC (finally!) no longer says neutropenic. This, from the lady who walked into the ER in June 2007 with counts ’that do not support life’ (WBC 2.0, Hgb 2.9, Plt 8)

My story in a nutshell – a coincidental bout with Lyme disease (June 07) brought a dx of ‘aplastic crisis’ which did not resolve. Prednisone (July 07) gave me 20 pounds, much misery, and no improvement. Rituxan (Aug07) had no side effects, but no better results. A long winter, with decreasing counts, and many txs. Off to NIH for evaluation for SAA.

April 2008 – Successful ATG treatment with the Best Medical Team Anywhere along with CSA, back home after 17 days (including 5 extra days for IV fluids to counter hemolysis from platelet tx reaction – another story for another day).

Oct 08 – 6 month checkup with my new best friends at NIH – averaging 24 days between PRBC tx, platelets in the teens, ANC bouncing between .8 and 1.3 – okay, but don’t break out the champagne yet.

Apr 09 – 12 month checkup with the angels at NIH – averaging 8 weeks between PRBC tx, platelets in the 20s and 30s, WBC finally staying over 2 – considered a ‘success’ for the clinical trial, but what to do now?? Dr. Neal Young tells me ‘Don’t let this disease run your life’ – I take those words to heart, and decide to let the summer go by before deciding on ATG re-treatment.

Sep 3 09 – 3 months since last tx, platelets in 30s, ANC between 1.4 and 2.3 – all numbers I can live with, and I do.

I write this because I have found bits of me in all of your stories here for the last two years, and want you all to know that you touch my heart, and encourage me, and you need to believe that life does get better.