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Myelodysplastic Syndrome (MDS): how to increase red blood cells?
Blood Cancers & Disorders | Last Active: Sep 1 6:47pm | Replies (101)Comment receiving replies
My husband was diagnosed with MDS not even 2 years ago and he passed away June 27. He had other issues than the MDS but he also had an extremely low level of red blood cells. He went in to get tested on that Tuesday and his level was 7. They couldn’t give him an appointment until Friday. He went into cardiac arrest during the transfusion and although he was revived 3 times, never woke up.
I’m pleading with anyone who has MDS to stay on top of your blood levels. Personally I partly blame his doctor for not following up on his condition. He went over 3 weeks without a transfusion and it was far too long.
God bless you all and best of luck
Kathy Thomas
Replies to "My husband was diagnosed with MDS not even 2 years ago and he passed away June..."
Kathy, I am so sorry. Yes knowing he was 7 on Tues and not receiving blood til
Friday his poor body couldn’t handle it all. Not acceptable but that doesn’t help you now. Yes we all need to be better advocates. Please take care of yourself.
As a person who has MDS (and many other things) I want to thank you for being a caring supporter of your husband through his condition. I know you were very important to him. We do need the people around us and my heart goes out to anyone who finds themselves alone with one of these conditions. Thank you.
Kathy I am so very sorry for your terrible loss. My husband was diagnosed with MDS in late November 2023. He was referred for a stem cell transplant at Mayo and began chemotherapy and transfusions with our local cancer center. We have had a wild ride with several hospitalizations, blood counts three times a week and many transfusions. At last a donor has been found and pretransplant testing scheduled. My heart goes out to you. This could easily happen to us. Be gentle with yourself in your grief.
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Oh my goodness, Kathy. I’m so profoundly sorry for your loss and I’m struggling with what to say! What a devastating loss and I’m as dumbfounded as you are that your husband wasn’t given blood the same day his doctor found out his hemoglobin reading was down to 7. Anything below 8 is considered dangerously low and 7 and anything < 7 is critically low, which can lead to heart failure.
I want to thank you for sharing your husband’s story, Kathy. It’s a tragic loss for you, your family and friends. My heart goes out to you because it feels as though there is unfinished business. Sometimes it can be helpful to write what you’d want to say to your husband’s doctor, to get it out of your head. You can decide if you send the letter or not but moving those thoughts out onto paper instead of ruminating in your head will help relieve some of the underlying emotions that need to be released.
It may be too soon for you, but we do have a Loss & Grief support group in Connect with other members who have lost their loved ones. It can help to not feel so alone. https://connect.mayoclinic.org/group/loss-grief/
Kathy, do you have family members nearby to whom you can turn to for support?