AA dx 2009, now need BMT

[Optimistic]

Short story I'm 29 dx with AA in 2009, was treated in 09 with horse AtG & cyclosporine weaned off in 6 mns was good for about 1yr then relapsed treated with rabbit ATG n cyclosporine was good for 2 yrs got pregnant ant relapsed late in my pregnant in 2013. So for the past yr the docs were hoping it was pregnancy related n treated me with prednisone & cyclosporine. Since Mar. My counts started falling again this time besides hemoglobin , plalets too. My WBC are always good, I've been ruled out for any other dieases, with many labs & biopsies. Now I'm getting HLA typed for a bone marrow
Transplant, I always new one day I might need it but now it's more real & I'm scared. I'm worried I won't find a donor cause I'm mixed race, no sibilings, & I'm very worried about complications. Does everyone get graft vs host?im worried about complications going into it and coming out. any AA survivors with BMT or anyone advice needed ok May just some reassurance

[Neil Cuadra]

Optimistic,

Your username is your best weapon. In the face of the unknown it really helps to be an optimist.

It's certainly unfortunate that your AA keeps returning. But here's what I see on the bright side: Despite the eventual reoccurrences, your AA has responded to treatment. Progression has been slow so conservative treatments have been possible. A repeat of the horse ATG remains a choice. You're young, which is an advantage with any treatment approach. There has been amazing progress with partial-match transplants since my wife had her transplant, so having mixed ethnicity is no longer a prohibitive factor, as it once was. I assume that you made it through your pregnancy and delivery despite your low blood counts, and that deserves congratulations.

Many transplant patients get GVHD, but it's often mild, can fade over time, and medications can help. Many post-transpant patients go back to they normal lives despite some residual chronic GVHD, and some don't have symptoms of it at all.

If they find a donor for you and can arrange a transplant to cure your aplastic anemia once and for all, your biggest practical concern might be arranging the necessary help from your family members and for your family members. Dad will likely have his hands full caring for both you and a baby without some assistance from family, close friends, or even hired help. It's too soon to work out the details, but it's worth keeping your entire family informed and aware that their help may be needed.

Please let us know what happens with your donor search and your ongoing treatment.

[vickij]

I will be Praying for you & for you to find a donor. I am 61 and had transplant June 2013 for MDS. I am doing good and my hmg was 14 last month. I was happy when it was 10. Just stay optimistic that you will get through this.

[Relentless Against SAA]

I feel your pain. For a year we did not have a 10/10 match for our son. Scarry to say the least. If you are unable to find a 10/10 match, I strongly urge you to call NIH in Bethesda MD. Dr Rick Childs is having wonderful success with Haplo/cord transplants. Statically, this procedure is proving to be the safest form of transplant if one does not have a 10/10 match. This procedure is in Clinical Trail, if accepted into the trial, NIH can greatly help with travel and lodging cost. The wonderful care at NIH is free. ( I have been very pleased with the care and I know that I am a nightmare for any medical staff. I question everything.) You can view Dr Rick Child and Dr David Margolis on Youtube discussing the success with the Haplo/Cord transplant. I urge you to at least call them before making any decision. Our previous transplant doc never mentioned this opportunity at NIH. It terrifies me to think what would have happened. His plan was to use a B mismatch. We have since been told that would very likely to have caused horrible chronic GVHD or death.
Please let me know if you have any questions.
May the Lord bless you and all with bone marrow failure.

[Optimistic]

I appreciate all the encouraging words & blessings. If the docs are unable
To find a good enough match in live donor bank they are going look into the stem cell bank which I think is the same as halpo / cord thanks for the detailed info relentless AA I'm going to do lotz more research. Vicki wow thanks, and congrats on ur transplant how are you doing did you get GVHD? Neil thanks also for all the helpful info how long has ur wife had her bone marrow transplant I love hearing success stories it makes me that more optimistic