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#1
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AA with nausea and tired
HI! I was just given the diagnosis of AA this past fall and am starting to talk to a transplant doctor. My numbers are not actually really all that low (platelets-68, Hemoglobin-9.2) But right now I play the "wait and see" game which is frustrating. I know that is the life of AA whether in treatment or not but I haven't quite got the hang of it yet as I am new to the diagnosis. My counts have been flactuating since my pregnancy 2 years ago and because there are no blood counts prior to that, I could have had this for years. I feel like I play mind games with myself because I think and worry that things are related to AA but then I tell myself that I am just using that as an excuse as I could have had this forever and didn't have that for excuse when I didn't know about it. Either way, it is hard not to be worried about playing medical issues off as being part of the AA. I am not on any kind of treatment but right now I get naseous at random times, wake up feeling naseous and end up throwing up, and like others, I am tired but I am also a teacher, coach, and mother of a 3 and 1.5 year old so fatigue is inevitable. It sure does take me awhile to get myself going again if I have a really stressful or hard day or couple of days. It gets to be an emotional up and down and I don't even have to deal with the tough stuff yet of treatment and/or really low counts. I am normally a very positive, not a big deal kind of person so not being that way at times is frustrating.
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#2
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I have MDS, not AA, but you just told my story. Don't you love trying to keep your coffee down in the morning?
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1. |
#3
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You said it all
How I feel for you having small children and having to make the world go on every day. I am a 57 yr old Grandmother with this horrible disease and I'm having trouble getting through the days and try and absorb all the medical facts. Your story told it all. I also find it very hard some days to believe that the rest of the world is going forward and my life is in medical limbo. I am getting ready to start medicine for remission and have been lined up for transplant as soon as this is achieved. My life does not belong to me right now and that is really scary. I find it hard to go to work each day and pretend that my world is not a total train wreck, no one at work has a clue that anything is wrong with me medically, and I have those times when I go to the restroom and either throw up or sit and cry. Helps to hear from people like you. Let's keep up the fight together.
Lindano |
#4
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I do find comfort in hearing other stories and to be able to talk with others dealing with the same kinds of things. I am happy I have found this forum. Are there other forums that people have really liked also.
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#5
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Have you or doc checked to make sure you don't h-pylori bacteria in your stomach....it's the bacteria that causes ulcers and gastric problems. They do a blood or stool or breath test. It pretty easy to test for and worth getting checked. Like you said....it's difficult to determine if your symptoms are related to the SAA or something else. So I would get it checked out so you have peace of mind on that front.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
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