Quote:
Originally Posted by Margaret W
Welcome, Charles. I'm sorry to hear of your diagnosis and wish you well as you pursue treatment.
Margaret
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Margaret,
That is quite and inspirational story you have! I've been dealing with the whole situation pretty well. My biggest frustration is with the level of activity that I can be involved in. I've taken pride of the level of fitness in my life and everything I have done has been revolved around it. Going from being a marine, training in mixed martial arts, and building houses for a living, to reducing my activity to going to school and having wine and painting nights and going on walks is a big jump and can be very frustrating. People around don't understand why I'm stopping 5-10 times on the 3 flights of stairs up to my classes on campus.
I feel that I am very informed for the short time of involvement and research that I have put forward into education my self on the situation. The things that I am having a hard time finding information on are what the treatments are like. Luckily I believe the VA is taking responsibility for my illness and should be helping heavily in the finances of treatment. What was getting ATG like? I'm assuming since yours was so long ago that you did not have a course of cyclosporine along with it.
Per the information I've gathered from many sources I am thinking that a transplant would be the best option. I'm basing this on my age and how great my condition of health is besides the diagnosis. If they decide it is time for a treatment and the diagnosis is still speculative, I also think this would be the best option since even if their diagnosis is wrong (possibly missing the bad stem cells in bone marrow biopsy and aspiration when looking for MDS) because it is also a cure option for other possible marrow and blood diseases and could prevent them from becoming more severe if this is the case and I went with ATG. What is the process of a marrow transplant? All I have been able to gather is that is radiation treatment in the days leading up to it in a dose depending on the doctor, to kill the existing marrow, then the replacement stem cells through an infusion like process. It would be nice to get some first hand in depth input as to process and experience of both treatments. Also what impact does donating marrow have on someone? I can't imagine asking a younger sibling if it will have lasting effects on them.
To be clear, I have complete confidence in my doctor. None of what I am saying should be taken as a lack of effort to inform me on their part. My Dr. is incredibly invested in his patients and I could not be more happy with how things are being handled and the effort given. I am trying to be educated before I get to treatment because it does not seem too far off and if it comes down to me making a decision then I would like some first hand accounts to consider in my choosing.
To everyone who reads or writes here, thank you immensely for your time. Every piece of information on this site is a huge contribution and could not be more greatly appreciated.