[MichelleD]

Hi,

I also have all three. I was dx with SAA 6 yrs ago and have undergone Horse ATG twice. I am on Cyclosporin for life. In May 2009 I found out that the AA had morphed into MDS and I had also developed a PNH clone (47%). There are many different types of MDS, so I don't know what your biopsy has shown. Mine shows the chromosomes in my stem cells have mutated in 17 of the 20 samples. They aren't the usual mutations, but none are good. We immediately started the donor search. It can be a very long process and costly. My insurance doesn't cover the cost of the search, other than the donor that we use. It cost's $3700 a test for each of the people that we have to detail test b/c mine were all found on the international registry (no hits in the US). This also takes alot more time. We have just found a 10/10 match (6 months later). However I have been told by doctors from all over the country that at 41, I only have 50/50 odds of surviving the actual transplant. We are waiting until I go out of remission again and then will head directly into transplant.

Only you and your family can make the right choice for you. Listen to what and why your doctor is telling you to do certain things and get a second or third opinion if you want. I have had many because of moving during my sickness and they had all agreed on the course of treatment for me. That has made the decision making easier. I would also check things out on the NIH's website. They have many studies going on and they are the best in the world on this subject. Dr. Young is the best around.

Each patient is different and when you have all three, they are never the same. We all react differently and have different things coming out of remission at different times. I hope it all works out for you. It's been a long road and I'm not looking forward to explaining the transplant to my 10 & 11 yr old. They say is could be in a few months or 10 yrs. They just don't know.

Michelle