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Living with MDS (Myelodyplastic Syndromes)
Blood Cancers & Disorders | Last Active: Aug 30 4:21pm | Replies (229)Comment receiving replies
I am a 76 year old male who is now living with Myelodysplastic syndrome, ringed sidero blasts, multilineage dysplasia (MDS-RS-MLD). Lot's of words...
Although at this point, I am classified as “low risk, but the consequences are that I am anemic as well as immunocompromised.
Currently, I am monitored through monthly blood tests by an excellent hands-on hematologist.
Yet, having been very healthy and quite active all of my life, I am finding this to be quite difficult to live with , and to “wait”. Am told that best treatment is stem cell transplant, but due to my age and beeing immunocompromised, risk of infection makes transpant unfeasable.
Same with blood transfusion, i.e. too risky.
If no infection, I can last for a number of years. But over the last year, I have had three events where infections occured, and required antibiotics.
Thus all is well for me, if I can escape serious infections.
Need to take naps, which I find embarassing. 🙂
I realize that all of us seem to be living with subtle differences within the MDS family, but would there be any suggestions as to what I might be able to do to possibly modify the current situation?
I am ready to go on living with how I stand, but am getting preassure from family to get a second opinion.
Replies to "I am a 76 year old male who is now living with Myelodysplastic syndrome, ringed sidero..."
My husband who just today hit 83, was diagnosed with the same MDS-RS-MLD as you in 2022. He was very active playing golf three times a week, fishing, dancing and walking with no problems. Due to being so tired just walking from the car that's sitting in the garage into the kitchen, he no longer does anything! He goes once a month to check his levels with a closer eye on hemoglobin. If his blood pressure isn't normal, he doesn't get the procrit that's helped bring his hemoglobin up to 9. Any lower, that's when transfusions start. Three years and I'm still researching MDS or related symptoms. He had to learn so much more because he wss totally in the dark about the acronyms used on his blood results. Has anyone recognized being depressed during the "wait"? Have you noticed progression? Did you have petechiae ? I feel lost on understanding MDS as I did three years ago!
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Thank You for saying it’s embarrassing to need to take naps. I can relate, I need them also but have been ignoring my body. I feel lazy and bad because my husband is at work doing roofing and I work from home and I am 49.
I know it will be good to do so and probably help me from being grumpy.
I have found myself with many emotions since finding out and am experiencing more hard days than easy. I want to not only be grateful and kind but really feel JOYFUL 🙏🏻