Well, I've spoken to my hematologist.
I have a choice. I can miss one dose (and only one) of the Fcort and see if that helps or I can take a half dose again and see how that goes. I cannot go off the drug altogether.
He said if I go off the med, I WILL have BP problems and I WILL collapse and I WILL end up in hospital or nursing home. The choices are one bad med with side effects or hospital/nursing home or worse.
I feel really stupid that I have been in denial that there was no third option. On the positive side, I don't have to take the extra salt, my UTI is gone and I always feel a bit better in the afternoons.
Just to add a bit of humor to my day, I resigned from work on the 10/10/11 and received my total superannuation and accrued leave payout at that time. A pay envelope arrived today for the princely sum of 12 cents! There was no
explanation. I worked for my employer for almost 25 years and my pay was very rarely correct. Obviously, 99% of the mistakes were in my employers favor. One of the few times they've made a mistake in my favor it was for 12 cents, I had to laugh.
Thanks everyone for your concern, looks as if I just have to accept that my life is not going to be the quality I would like but reading the threads on this forum, I feel like I'm whining when so many people have worse problems.
Regards
Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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