Hi - I'm sorry you are struggling with MDS - but do not despair - there is hope.
I wasa diagnosed about four years ago - The first year or two there was no need for treatment, but my Hgb slowly declined. At around Hgb of 10 I noticed it was getting difficult walking up hill. We tried Aranesp but that didn't seem to work. Next we tried Vidaza - a frontline drug for fighting MDS that works for maybe 40-50% of the time - for a period of time. That didn't for me either - but I would think you would try that next. My Hgb and platelets were both falling - Hgb got down the 7's and eventually to 5 something. At that level I felt terrible, had very little energy, had trouble just walking. I became dependent on blood transfusions and became a "professional patient," At that point blasts in my marrow started rising and we decided upon a transplant - Going into the transplant they discovered I had serious coronary artery disease - and serious pulmonary hypertension - associated with a build up of fluids from so many transfusions. I needed a stent for the coronary artery disease - the pulmonary hypertension cleared up after I stopped needed transfusions. I'm nearly eight months post transplant now - I've been skiing, can charge uphills and generally feel great - I'm looking forward to my son's graduation next week.
It's great that you're doctor is caring and you respect each other - but you might want to also consult with an expert in MDS and a transplant specialist. As Bailie mentioned - your age should not preclude you from a transplant alone - and even serious co-morbidities such as heart disease can be accommodated. It can be hard to think clearly with Hgh around 7 - so transfusions may be called for so you have the energy to process information and get to the right doctors - I hated the idea of transfusions, but they did help me function. If you are a candidate for a transplant you don't want to wait too long - and the fewer transfusions you have the better. Why did you doctor say you were not a transplant candidate?
Here is a link to a list of MDS centers of excellence.
http://www.mds-foundation.org/mds-ce...of-excellence/ I don't see one in Alabama - are you able to travel? There are some excellent centers for both MDS and transplant in Florida and Georgia - and there are also great places New York, Maryland Texas etc. Maybe you local hematologist knows someone - maybe you have family or friends near a center - I see they do transplants in Birmingham but I haven't heard anything about them - and if you can travel I'd try and get to a center with lots of experience with both MDS and transplants - especially challenging ones. A transplant can be difficult, but holds out hope for a cure.
If you are going to start a drug like Vidaza, you also wouldn't want to wait until your counts get too low, as that drug often lowers counts, especially platelets, before it helps. Factors influencing your treatment include the type of MDS you have, the percentage of blasts in your marrow - and mutations you may have. A local hematologist will not necessarily have experience with many MDS patients and may not be aware of clinical trials that may be worthwhile, nor be aware of advances in stem cell transplant.
I needed a lot of support, faith and prayer - as well as some great doctors - to get through this far. Try and stay positive and focussed on finding the best treatment plan for you.
Good luck and best wishes,
Paul