[Tracy Rhine]

I don’t know much about transplants. For my only option for one is through MD Anderson and they are not particularly in a rush to help me I don’t have insurance and MDA is more interested in providing care to foreigners.
Even though Iam 45 and as far as I know had no heart problems but my chest has been hurting me for past two days and I read MDS can cause heart problems due to lack of blood and lack of oxygenized blood entering the heart.
But I don’t know about grandchildren but I’d assume they are the same as children and not considered a good candidate. Siblings are the best candidates but at 77 I doubt there are many around. There’s a national registry that would be your best option if he is a candidate. But if he has other on going issues. I can not even get a port placed because my ANC , WBC, and platelets are so low so if I have had, am having or about to have a heart attack surgery is not an option for me.

[Tracy Rhine]

I developed thrush Nystatin is considered a mouth wash. That is what they treated mine with it is not like a traditional mouth wash and different doctors give different directions. I was told by one to swish it around gargle it spit it out. Another told me to swish it around swallow. I got better results by swallowing. Thrush is a yeast nfection shouldn’t affect the appetite or swallowing ability. I had a secondary tonsillitis and swollen lymphoids that caused my problems.

[Tracy Rhine]

I am 45 was diagnosed with MDS 18 months ago though my symptoms and conditions started in spring of 2011. By the time I was diagnosed I was already high risk.
The only reason they tested me despite being aware of droppages in my CBC s since 2012 was because I had another condition or else I would still be walking around unknowingly that I had cancer.
My blood values are much lower than most posts I have read on various MDS web pages. And other than shortness of breath loss of energy and extreme fatigue I have no problems so if all these older people are having painful episodes there is probably a under lying other condition.
No matter how many transfusions of RBCs and platelets I receive my platelets every week are below 5. My hemoglobin is 7 my WBC is 1.4 my ANC is 0.03. Every week every blood drawl doesn’t change they can give me 50,000. Platelets and two to three units of RBCs. Always the same.
I was already below what I have seen as being called MDS final stage on one web page by the time I was diagnosed. And I got it more than 20 years before the average MDS patient. They treated me with Vidaza it was a wash didn’t get an improvement didn’t progress. I have decided to only get transfused when I feel it necessary really no one is promised tomorrow anyhow. So really to those over 65 just be thankful you didn’t get MDS at 45. I can’t work due to fatigue and all the limitations placed on me by my hematologist and the fact I spend three days a week at doctor’s office and two to four days a month admitted in the hospital.And social security won’t give me a damn penny. At least older people can get SSI.

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