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AA Aplastic anemia

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  #1  
Old Wed Dec 14, 2011, 02:05 PM
Dre's Wife Dre's Wife is offline
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Join Date: Dec 2011
Location: High Point, North Carolina
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Husband needs spirits boosted!!

Hello everyone,

My husband was diagnosed with AA on September 26, 2011. He has been fighting one infection after another since then and remains in the hospital. Due to the infections, the doctors cannot do a BMT right away. However, they have started the initial testing for an unrelated donor that was found on the registry. This has been a super long process so far and my husband needs a serious spirit booster. Does anyone have any suggestions?

Thanks!!
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Erica, husband Andre age 34 was diagnosed with AA in September 2011; treated with ATG and cyclosporine; currently awaiting BMT
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  #2  
Old Wed Dec 14, 2011, 03:02 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
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There is a lot of support at the AAMDS organization. Here is some information from them to get you started.

http://www.aamds.org/patients
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #3  
Old Wed Dec 14, 2011, 08:40 PM
Neil Cuadra Neil Cuadra is offline
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Location: Los Angeles, California
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Erica and Andre,

If you're looking for silver linings in a dark cloud, start with the fact that you found a matched donor in the registry. That wasn't something you or the doctors could control, so consider yourselves lucky.

Also please know that many people have traveled the path you find yourself on, and you've found one of the places where you can talk to them and their families. Feel free to ask questions, tell us what's going on, or complain about all the frustrations patients and their families have to go through.

Being in your 30s is an advantage over patients who are too old to consider a transplant. My wife had a successful transplant when she was in her 40s. Kids do well with transplants but are often too young to understand what's going on or to participate in decision-making with their doctors. You can do both.

Doctors know a lot about controlling infections, and we'll keep our fingers crossed that you can finally get past them and reach a stable point where all treatment options are available. You've got a team with a lot of medical science behind you, and AA treatment is better and more successful today than at any time in the past. I'm sure you want to get past this disease and get on with your lives, but since you're stuck with this detour for now I hope you'll stay positive, consider what you have going for you, and look forward to success.
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Old Wed Dec 14, 2011, 11:42 PM
Ellen McDonough Ellen McDonough is offline
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Join Date: Sep 2011
Location: United States,Denver,Colorado
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Hang in there

I agree-You are lucky to have found a donor!I am age almost 52 years and was diagnosed at age 49.Because of my age I had the horse IST and Cyclo. Just have to take it one day at a time.There are ups and downs all along this path and although you can try to take control and advocate and educate yourself ultimately it is up to the universe and how the chips land.
I just attended the ASH conference and lots to be hopeful for as to research progress.
I often wonder in amazement at all the brilliant doctors and researchers out in the world --working so hard to find us SAA patients new treatments and betterment of life.I walked around the convention center in San Diego with 20,000 hematologists and scientists. -thinking what motivates these people to do such great work ??So ~~keep up the hope and faith~~stay positive.
Ellen age 51--SAA -partial remission.
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Ellen McDonough--Denver,Colorado

[57 year old,diagnosed with Severe Aplastic Anemia 4/2009.
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