[Chirley]

Hi, I took half a dose again last night and I do feel slightly better this morning. I don't seem to be as breathless although I still resemble the Michelin man.

I looked up Midodrine and in Australia it's only available with individual authorization from the Health Department of the Federal Government. While I was looking it up I found a webpage for Austin Hospital and they claim to specialize in autonomic hypotension investigation and treatment. Unfortunately I think Austin Hospital is in Melbourne and at this stage I'm pretty sure I wouldn't get medical clearance to fly.

I don't exactly know why I have a hypotension problem, I was just told it was from the neurological damage. I also don't know why I had a low potassium when I was admitted to hospital which took 5 days of IV potassium to correct (before I started Fcort). The last potassium level I had done it was 3.1 (3.5-
4.5) but I was told it wasnt low enough to worry about, that was before I started blowing up like a balloon.

One thing I have noticed is that I keep getting a tight uncomfortable feeling in my throat. It's worse at night whether I'm sitting up or lying down. It almost feels as if someone is choking me. It's not just at the front of my throat but from one side to the other kind of like from ear to ear but lower down towards the upper chest. Occasionally it turns into outright pain. Would you have any ideas what that might be?

I feel as if I need a referral to a physician who would have a better understanding of BP problems and treatment but I already have a GP, hematologist (will see in 2 weeks), neurologist (no scheduled appts), rehab specialist (no scheduled appts), and Prof of metabolic medicine (no scheduled appts). How many do you have to have before you have to start trusting they
know what they are doing? (I suspect they don't confer with each other).

I have a bottle of Lasix tablets that I was given when I was having regular blood transfusions and I've been very tempted to take one but I'm a bit worried it might lower my potassium even more and make my BP drop, it would also negate any good that the Fcort might be doing. I weighed myself again yesterday and I've now gained 8 kilograms in 3 weeks that's almost 18 pounds! I might start measuring my intake and output to see how much fluid I retain each day or does that sound too hypochondriacal?

Have to go.

Regards

Chirley