Thread: Fludrocortisone
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  #17  
Old Fri Apr 20, 2012, 10:52 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Thanks for that tytd.

I don't have the BP monitor yet. I bought it on eBay and am waiting for delivery.

I don't think there is any service where a nurse can visit or at least, I've never heard of it. My GP took my BP on my last visit (was already on Fcort with edema) and my sitting BP was 90/50. So even with treatment it was okay but certainly not high. I was told the aim is to keep the systolic 90 or higher.

My father has a monitor and before I started the Florinef he tried to take my BP on a couple of occasions and it just wouldn't take a reading....it kept saying error even though it would take his and Mums okay. I assumed my BP was too low to register.

I'm starting to think that the fluid retention can make my brain swell. I noticed that every time I cough my head hurt on top of the low grade headache I have all the time.

I hate to admit it but I had as much as I could stand and gave in and took a Lasix tablet half an hour ago and I am going to slowly wean myself off the Florinef. I suspect my potassium really is low now even though I've been drinking orange juice and having potato at most meals, I don't and never have eaten bananas so that's not an option. I love tomatoes though so poached egg with grilled tomato for breakfast has been thoroughly enjoyed.

I expect I will get a lecture from my hematologist at my next visit but he has always maintained he believes in quality of life over quantity so I'll remind him of this.

Sounds odd but I can't wait to spend the afternoon in the toilet.

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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