Lately when I work for 1/2 hour to 45 minutes I get tired and out of breath. I'm not doing hard labor. I'm just doing housework or grocery shopping. It makes me wonder if I'm having some kind of relapse.
I don't know if it's something as simple as my hemoglobin being low again (that would explain why I get tired and out of breath). Or perhaps it could be more serious like my MDS coming out of remission.
I'm wondering if the coffee I'm drinking is damaging my donor marrow. I have not heard that caffeine causes damage, but I'm just wondering. I've had to drink a lot of coffee lately just to stay awake.
Perhaps I could be having kidney problems and not MDS. I've been eating too many foods with too much sodium lately.
Other times I wonder if it's the Hemalytic Anemia coming back. I don't ever want to have that again. There was a time when I had to have seven bags of blood a day just to stay alive.
What makes this more difficult is that I'm only getting blood tests done once a month now instead of once a week. I don't know from one week to the next how well I'm doing. I could have some kind of serious problem and know nothing about it.
Tomorrow (Tuesday) I'll have my monthly lab tests done. Maybe they'll tell me something I need to know about my condition. Perhaps there's something wrong. The tests could just as easily show that nothing's wrong.
I won't be able to relax until I know what my results are. Worrying like this isn't normal for me. I'm used to seeing the results every week. This helped me feel more secure in knowing how I was doing each week. Not knowing at all is a lot worse than knowing that something is definitely wrong.
If the test results don't tell me anything conclusive I'll call my transplant nurse in Hershey, and maybe she can give me some idea of what's happening. As soon as I know what it is going on I'll be sure to let you know.