Aplastic What?

imagesEosinophilic Fasciitis is often followed by various blood disorders, such as Leukemia, Lymphoma or Aplastic Anemia.  In my case, my blood tests showed that I was losing cells in all three major parts of my blood:  white cells, red cells, and platelets.  After my second bone marrow biopsy, I was diagnosed with Severe Aplastic Anemia, which is another very rare condition, occurring in 1 or 2 people per million.  My doctors at the time tried to raise my counts by using different drugs:  Solumedrol (3 days of IV form of super concentrated Prednisone), IVIG (5 days of Intravenous Immune Globulin), Neupogen (injections that stimulate white blood cell production) and high doses of Prednisone and Cyclosporine.  While we were waiting for the counts to rise, I received several transfusions each week of red blood cells and platelets to keep me alive.  After realizing that this was not the best path to deal with my Aplastic Anemia, we started seeing specialists at City of Hope.  There, I was hospitalized while being transfused with ATG (4 days of IV Anti-thymocyte Globulin – a form of chemo derived from horse antibodies).   I picked up a fungal infection in my lung, which is very dangerous with high doses of immune suppressants and virtually no white blood cells to fight it, so I stayed for 43 days.  I did not respond to the ATG, so my team of doctors decided I needed a bone marrow transplant, the last resort.  About a month later, I was re-admitted to the COH Helford Hospital, and was given high doses of chemo for 4 days, which was intended to wipe out my diseased bone marrow and my immune system in preparation for a friendly welcome to the new marrow.  My brother was a perfect match, and on December 14, 2012, I received a quart of his bone marrow during my transplant.  We started seeing improvements in my counts about 3 weeks post transplant, and they have continued to rise.  I was released after 45 days, when my docs were confident that my counts were on an upward path and all my IV meds were being tolerated in pill form.  After a fourth bone marrow biopsy, it was determined that I am presently 99.75% my brother on a cellular level, which is allowing me to make my own white cells, red cells and platelets.  My doc said I could go on a crime spree and pin it on him 🙂  I still have a long road of recovery ahead of me, but it appears my Aplastic Anemia is getting slayed 🙂

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11 thoughts on “Aplastic What?

  1. Congrats on a successful bmt! My son had his in 1994 for acute lymphocytic leukemia. Thankfully his fraternal twin was a match for him. Thanks for following my blog – I will follow you as well to watch you celebrate your life:)

  2. I am in awe of your journey and your amazing articulate way of helping others who also suffer from illness related to or not related to what you have been diagnosed with. Your attitude is that of miraculous. I am a better person by just reading your struggles…you make me a better person today! Thank you!

    – Love always LOVE

    Haynes Abney-RajBhandary

  3. Diagnosed with SAA in March 2015, ATG with no results, BMT last December! Still recovering! Fingers crossed for the both of us and all the fighters out there!

    • Go Juliet! – Wishing you all the best in your recovery! Hoping you’re not dealing with too many issues!!! Sounds like a very similar path to mine… My BMT was also in December, but in 2012. ATG did nothing for me either. It gets better 🙂

  4. My sister was just diagnosed with AA. She started with EF, though undiagnosed for several months, and finally got admitted to the hospital for low platelets. It’s been an odyssey — 8 weeks later she’s still in the hospital, now with AA. ATG isn’t working. I’m glad to see someone who went down the same path and started to get better! Docs haven’t mentioned chemo and marrow transfusion as a last ditch effort…I wonder why? Thanks for sharing your story.

    • Rita – Thanks for commenting. Your sister is the first person I’ve heard of the had EF, then AA. It is rare to have one, but VERY rare to have both. My docs had me try ATG as well, and when it was clear that wasn’t going to improve my counts, they set up a bone marrow transplant. I was terrified, thanks to all the bad publicity that procedure gets, but it’s really not that bad. More time in the hospital, loss of hair (due to the chemo), low immune system and a feeling of being worn out, but so do-able! I wish her the very best! Let me know if she wants to communicate! Joselyn

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