Husband with MDS

[Kathy Van Meter]

My name is Kathy and I am married to Dennis. He was dx’d with MDS 20+ years ago and is now 67. His current numbers are wbc 2.0, plts 53 and hgb 12. He has had bi-lateral hip replacements in 2004 (did great) and knee replacement last June (again, no problem). He needed transfusions with hips but not with knee (one shot of Procrit). Heme-onc told us in 1994 that without a BMT he would probably be dead in 3 years, but guess a higher power had a different idea. We don’t focus on the numbers, more into how well he functions with them. He works fulltime and our youngest kids are 16 and 19 (5 others older) and 8 grandchildren. He does have some fatigue but seldom gets sick, even around all these little ones. I guess he is the real “watch and wait.” Just wondering if anyone has lived life this way with MDS. Dennis maintains he’s just an “outlier” and what few cells he has are “kick-***. We are both followed by a heme-onc at Mayo Scottsdale as I have an MPN and am on shots of interferon (pegasys). What were the odds of us having reverse blood disorders? Together we make a whole person. Would love to hear from others who are living with this disease. Peace……………Kathy

[celebrations]

Hi Kathy,
20 years are a long time, congratulations for your and your husband’s spirit of mind…I think you are lucky and you behave in the right way. Do not focus too much on the numbers and be in the watch&wait. I wish you many more lucky years together.
My name is Bergit, 56, I am from Germany, and I have been suffering form MDS more than 7 years. I have tried several therapies, but nothing had really helped me. I am transfusion-dependent and unfortunately due to my fatigue I had to stop working two years ago..all the best, Bergit

[fotis]

Hi

My mother is living with this for 6-7 years now. I start to believe that some people are founding about MDS really early just by luck, before it has really evolved. For example my mother found out after she was sick with really low white count, but afterwards all these years everything is above minimal levels. And she has multi line dysplasia.

If i remember correctly, search for posts by "Neil". He had MDS for 17 years, and lived pretty much normally, very helpful with everyone on this forum. And the irony, he died from something unrelated to MDS at around 70 years old.

[celebrations]

Hi Fotis,
I see in your profile that your mother was diagnosed in the same year as myself. You are right assuming that there are some cases of long-time-survivors, normally with low-risk MDS. And it is true that they are just lucky and do not do anything special to deserve or achieve this luck…Unfortunately those are only single cases.
Most of us have to face disease progression over the years. No use to deny it. All the best for your mom.

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