Thread: Fludrocortisone
View Single Post
  #11  
Old Fri Apr 20, 2012, 03:12 AM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
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
__________________
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
Reply With Quote