Myelodysplasia Complications

My red blood count went from 8.9 to 7.4 before the epoetin shots plus two iron infusions turned it around; it gradually climbed back to 9.4.
Earlier this year I had a scan for something else that showed a random assortment of enlargements, an aneurism, a possible bowel issue, all of which went uncommented upon except for bowel thing. A colonoscopy showed no problem there.
What I’m saying is that when we are looked at in depth, lots of weirdnesses show up which we’d probably be well off to ignore ….or at least, that’s what the doctors do.

Good morning @jelilien. Myelodysplastic syndromes (MDS) are a group of disorders caused by blood cells that are poorly formed or don’t work properly do to something amiss in the bone marrow where all the blood products are produced.
In your dad’s case it’s his red blood cells which are not reaching full or healthy capacity causing anemia. When that happens, there is a serious lack of oxygen being supplied to his body/heart/lungs which can cause the extreme fatigue he’s experiencing. It can also force the heart to pump harder causing that muscle to enlarge. He also has a partially collapsed lung which is adding to the heart working overtime.
He’s being treated with epoetin/epogen/procrit/retracrit, all of which are medications used to encourage red cell production. Reading the side effects of these meds didn’t show any specific symptoms that correlate with what your dad is experiencing. From my experience with having leukemia, the disease itself is most likely causing your dad’s symptoms.

When someone is admitted to the ER the medical staff will focus only on the immediate concern for the visit. So they won’t generally go into the details of other findings. That would be for your dad’s doctor with a followup visit.
Does he have a followup? Is he doing any lung exercises to help heal his partial collapsed lung?

Posted below are a few informational sites on MDS to give you a little insight to the Blood condition and possible treatments.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
https://www.cancer.org/cancer/types/myelodysplastic-syndrome/treating/general-approach.html
https://www.mds-foundation.org/what-is-mds/
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There are a number of conversations in the Blood Cancer support group. This one is about MDS with members discussion potential ways to increase red blood counts.
https://connect.mayoclinic.org/discussion/mds/
With members @jaylevel1 @littlelindysue @loula @tyson1221 @teteryan1 @shels93 @marcyjo

You can also type in MDS in the top search bar which will give you a list of all the discussions.

Is your dad working with a hematologist? Right now it looks as though they’re taking the route to increase his red blood cells. Have they started him on any of the treatments for MDS?

Please get you a good hematologist and then if any unusual symptoms come up you should call them. My husband has MDS and if we have any concerns during the day we call the bone marrow clinic but at night or weekends we call the bone marrow hospital unit. And if we would have to come to hospital we bypass ER and go a right to the unit. Abdominal pain was one of the things they always asked him about on our clinic visits. Ask questions and stay strong for your dad.

Hello @loribmt, he is currently seeing an oncologist for his MDS diagnosis not a hemotologist, I am not sure why, but this is the doctor he was refered to when he was first admited to the hospital and diagnosed with MDS. He is currently under treatment with epoetin and frequent blood transfussions. He will also start with an additional pill soon but I don't know the name of it. He has an appointment this Tuesday to speak with the nurse about the risks of it and how it will work.

What do you think?

Thank you for sharing your experience and thoughts.

Hi @jelilien, I think right now your dad seems to be in good hands. Often oncologists are also hematologist. I know there were at least 6 listed as oncology hematologists in my clinic where I was treated, my doctor being one of them. But he also saw other cancer patients such as breast, pancreatic, colon, etc.,. It sounds like your dad’s oncologist is on top of things with treatments.

The best bet is to wait until his appointment Tue and you’ll learn more about what meds are being prescribed next.

You’re not alone here…we have your back. So if you have any questions about medications or what the doctor has mentioned don’t hesitate to ask. A number of members had MDS and I had AML, (it’s older and more cantankerous granddaddy 🙃). We’ve all had meds and experiences to share. Hugs.

Could it be an enlarged spleen?

Hi @lobsterlover, Welcome to Connect. It sounds like you may have had experience with an enlarged spleen. Do you have a blood cancer or condition which may have caused this?