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Old Sat Jun 7, 2014, 07:29 AM
writer writer is offline
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Join Date: Jun 2014
Location: Jacksonville, Florida
Posts: 2
I want a bone marrow transplant!

Although I was newly diagnosed this year (I'm 53), I've lived all my life with "my" variety of MDS.

Doctors kept ignoring my symptoms and lab results or calling them something else. I've been told I'm just plain lazy (as a child) or that I'm depressed (teenage and beyond) because I never had any energy.

I kept wanting to know what was wrong with me but no doctor ever saw it as anything worth going after. One doctor did do a b12/Folate study to poke at my elevated MCV result. But, when it came back normal he just took an "oh well" position. Then, I volunteered for a clinical trial at Mayo Clinic for an overactive bladder.

I had a pre procedure CBC. When the urologist saw the result he dropped everything and called the Heme/Onc doctor himself to ask him to get me in "today as a courtesy to him". He handed me over to the Heme/Onc department THAT DAY and I was having a bone marrow drawn by the end of the week.

However, my Heme/Onc doctor (different one) is hesitant to even discuss or suggest we do a bone marrow transplant because I have lived so long with it ... but I'm going to push him as hard as I can for it.

First, I don't want to continue to live like this with no energy. The only cell line impacted in my MDS is the red cell line - which is very uncommon. I have great immunity but now my chronic anemia has become transfusion deendent. I've always wanted to jog or run! I have a hard time getting up and down now - I consider I'm only 53 now and can only imagine what it will be like when I'm older.

Second, my anemia is macrocytic. This has resulted in tinnitus - which I've had all my life. When I started with the transfusions the tinnitus became softer - which I attribute to the smaller RBC's going through my ear vessels. As the transfused cells die off the tinnitus once again increases. It's maddening to have it soften then come back in spades!

Macrocytic anemia is also know for causing dementia like symptoms as you get older. I'd rather take my 50/50 chance of a cure vs. death than take the same chance of ending up like that.

Beyond transfusion or a BM transplant there isn't anything out there for me.
My erythropoetin is off the scale high and my iron levels are just below "overload" levels - getting higher with each transfusion. None of the drugs available work on what I'm missing.

So that is me - I'm sure the 50/50 chance of survival beyond 3 years doesn't appeal to everyone but I'd rather be dead than know what I'm going into from here without it.
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