Shortness of breath

[lynne]

I just recently started shortness of breath a week after my transfusions. It was a bit scary because it is worse then I had ever experienced. My husband even took me to the emergency room. What has been your experience along those lines?

[Sandra Slowik-O’Brien]

I have the same thing. I am 67 year old female. I have been telling my doctor for quite awhile. I have not had a transfusion for 2 months. My numbers are pretty good now. But I am still short of breath. All kind of tests were done for breathing including lungs and heart. They could not find anything amiss. But Still have Shortness of Breath constantly. Good Luck.

[Allan Romriell]

64 male diagnosed with RARS in june of this year. On wait and watch as all numbers are pretty good, hemoglobin in the 11’s, other numbers normal or near normal. I really had no symptoms back in may and june when drs were concerned there was an issue based on blood counts. But although numbers are good I am experiencing more shortness of breath, although mild in the last month or so. Has me wondering if the accumulation of time with low hemoglobin starts to have an effect even though you are considered to be within a level that no treatment is necessary. Like I said, not a problem really as it doesn’t really effect my ability to do what I want for the most part, just something that I wasn’t experiencing a few months ago. This is a very confusing illness to say the least. All the best to you both.

[lynne]

Thanks for replying to my post regarding shortness of breath. I am a 76-yr old female. I am having echocardiogram soon. What test did they do for lungs? They did chest xray and EKG in emergency room. Are you on Exjade for iron overload?

[garsch]

Lynne I had MDS RCMD and prior to my transplant I was getting transfusions every week or so. I was on Jadenu (deferasirox) for iron overload. I was exhausted all the time with shortness of breath and I did not want to do anything. Trying to walk up the stairs or just standing in the shower was difficult. I had CT scans, EKG’s, & Xrays of my lungs and heart but nothing was obvious. My Hemoglobin would be in the 7’s but even after transfusions never got much above 9. I am 66 years old and I had a bone marrow transplant in June of 2017. They told me the shortness of breath would go away and after the transplant and the first thing I noticed was I could breath again. The Center of Excellence Hospitals listed on this website see these diseases all the time. I can’t stress how important it is to see a Dr. that is experienced treating this disease.

[lynne]

Garsch…..so glad you have relief from the shortness of breath even though you had to go thru the transplant. I have had MDS since 2001 without a lot of problems until recently. I am having echocardiogram this week. I trust my doctors. How long did you have the shortness of breath before transplant?

[Teresa Jackson]

My father has the same thing, and I’m always scared about this, most of the time I’m home alone and when he starts to have this i just feel so helpless and i really don’t know what to do!

[David Spicer]

My husband experienced pronounced shortness of breath once after receiving two large units of red cells. The folks at the ER concluded it was fluid overload, and the transfusions he’s had since are done very slowly. That helped.

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