[PaulS]

Hi Hope - sorry you have to deal with all this. Ideally you should find a Center familiar with MDS and who does a lot of work with complicated transplants. Many centers will have free or inexpensive lodging facilities specifically for traveling transplant patients and their families during and after the transplant. They will also work with you financially and with your insurance company.

Insurance is important to check with -there are a lot of pre-transplant procedures and tests that probably need to be pre-approved. How your insurance deals with insurance is critical. I have a PPO with an small local network but access to a large national extended network too - I was shocked to discover that with a transplant the rules were all different - as there were to transplant center in the small network - i did not need to use the extended network but rather could go to any Center of Excellence in the Country and have everything paid for by the small network provider rather than being covered by the extended national network - even though all of the major centers were part of that network. I believe my costs and copays will be lower - try and figure out where you need to be and then work with them and your insurance to figure out how to make it happen.

you will have a lot of follow ups so finding someone close (Duke maybe?) but there are great facilities in NYC (Weil Cornell, Sloan Kettering) MD Anderson in Texas, the Moffitt Center n Tampa, Johans Hopkins are all places to consider.

The facility who does the transplant will want to do their own tests and the will be extensive and will need to involve specials in other fields relevant to you specific conditions - you will need to have a transplant team include recommendations from these other specialties and be followed by them during your transplant.

You may need to get all your other conditions managed before the transplant which may take time - which may give you time to get on an iron chelator and lower your blasts - which could be good. The conditions may also effect the type of transplant you can have (myloablative vs. non-myloablative). It will also take time to find a donor.

Please don't panic or despair, but please do find a great MDS trans plant center and doctor you feel comfortable with ASAP. Call them and explain your situation - they will talk over the phone or via email. If they don't then find someone who will. Communication is very important. Find a relationship you feel comfortable in. Do you have family or friends who can help you?

Best of luck - you will be OK -.

Paul