← Return to Low Platelets with Myelodysplastic Syndrome (MDS)

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@jrwilli1

Ok we’re so I start. My husband had been watched by a hematologist for at least 5 years for a low white count and this hematologist though the low count were just going to be his normal until wham white count dropped to 2.4 , platelets down to 63 and hemoglobin 12 so sought out the hematologist again and a bone marrow biopsy was done. Came back from his present hospital with diagnosis of non Hodgkin’s lymphoma and would just need to continue to watch. Well ok but the hematologist felt this diagnosis didn’t fit his symptoms and they had just received affliction with Mayo so he sent biopsy info and report back to have MDS-EB2 (Myelodysplastic syndrome with extra blast). So off to different hosp for specialty area. He was seen sept 12 for his first visit and in sept 15 started chemo(vyxeas??). He is now 38 days post start of chemo. Had to be hospitalized for infection (fevers) sept 24 to Oct 17 with no sources reported out. He is presently at home recovering and has yet been able to truly feel good. He aged like 15 years and walks with walker and barely able to dress self. From hospitalization he has extra fluid load and taking lasix and not getting any sleep with voiding just about every 1-2 hrs. At this point he isn’t even close to being a transplant candidate. I am just asking for anyone to respond to let us know this will all work out. His counts just started to come back up and skyrocking. He goes back to clinic to receive blood products and albumin and potassium frequently. Any advice.

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Replies to "Ok we’re so I start. My husband had been watched by a hematologist for at least..."

Hello @jrwilli1 and welcome to Mayo Clinic Connect. It sounds like your husband has been through quite a lot and his health and quality of life have declined significantly. It is great that you have joined Connect for support for him, and you!

You will notice that I have moved your post into an existing discussion on a similar topic which you can find here:
- Low Platelets with Myelodysplastic Syndrome (MDS): https://connect.mayoclinic.org/discussion/low-platelets/

What is your main concern at the moment so that I can best connect you with other members who share a similar experience?

They say he may not be a candidate for a bone marrow transplant because of the way his body reacted to this heavy chemo and how the infections took such a tole on him. Has anyone else experienced such a experience with the recovery from the chemo and then continued on later with transplant. This was a very athletic work out person 5-6 times a week and ate very well and now speech slurred, sloppers some and has to use walker. They say no to stroke since he had CT of head when delirious with fever. They say it’s all part of the process.

For the voiding at night, try condom catheters.