DVT/Blood clots with MDS????

[wilmasdaughter]

Looking for anyone else who has dealt with DVT/blood clots with MDS.

Hello everyone. My 89 year old mother has been doing fairly well for the past 4-5 months - no hospitalizations, "stable" blood levels, staying active. This past weekend I noticed some really bad bulging veins on the back of her right knee - she said they were very painful (several lumps about 2-4 cm long, dark blue in color, about 1 cm raised up). I called her primary care doctor, and we are going in today. I am concerned that it is DVT, because she's already had multiple PEs in the past. If it is a blood clot, what can be done for someone with MDS at her age? Obviously she can't take coumadin anymore. What other options are there? When she was first diagnosed with MDS, the hematologist took her off coumadin and said she would be at even higher risk now for blood clots, but that there wasn't another option at the time.

Will she have to be hospitalized to monitor this? Or are we going to be able to have her recuperate at home?

I mentioned something about whether or not I should contact her hematologist (who has become more of her primary care doc than her 'real' primary care doc!), and the primary care nurse said "Oh they don't deal with that sort of thing." Wait a minute -- isn't hematology the study of blood? I am confused by her statement (same nurse who told my mom to take an aspirin every day -- and when her hematologist found out, he went through the roof!).

My mother has very low RBC, WBC and platelets -- all below normal.

Thanks for your input!

[DanL]

Definitely get the hematologist involved, and possibly a vascular specialist. I don't know that there is an easy solution, but if she does have blood clots forming, then she may be able to have blood filters placed inside of her major arteries to break up the clots and keep them from going to the lungs, brain, and heart. They are added outpatient and only take a few minutes to put in place.

[wilmasdaughter]

A doppler ultrasound on my mother's knee determined that it's not a blood clot, thank God! However, she's still in a lot of pain. To those who are "new" to this collection of illnesses, be prepared for lots of people who stare blankly at you when you mention MDS. I went through my mother's primary care doctor for this knee pain, and in the future, I will just go directly to the Hematologist/Oncologist. It's a totally different level of care!

I read somewhere on this forum about people who were having issues with their veins once diagnosed with MDS, so its likely that is what this is -- a casualty of the illness.