New to this club~update...

January 17, 2012

Well, I guess I'm an official member of this club....Doc 2 (Cardio) diagnosed me

with secondary hypertension and primary hyperaldosteronism.

Doc 3 finally called me back and said that new labs ruled out pheo, but

confirmed supressed renin and high aldosterone. Thus, hyperaldosteronism as

well.

Nephrologist Doc 4 this afternoon ordered an MRI/MRA with contrast as a next

step to determine unilateral/bilateral, adenoma, or hyperplasia or possibly

nothing to be seen on the adrenal glands. Doubled my Norvasc, said to stay on

the Losartin. BP 160/109 on One Norvasc and 100mg Losartin. Guess I stay on

the K tabs too. None of them want me to start the Epler (which on my ins. is

the same $10 copay as Spiro, all docs will give me either, up to me) until after

scan. They all now say that I may need AVS after scan and don't want me on

Epler until after AVS. Potassium good now 3.9 on 4 ktabs. Sent me for more

labs...magnesium, uric acid, bunch of other stuff I've never been tested for.

When Doc 3 called, he said that he had to do a literature search in order to

figure out my labs, and had to consult a radiologist in order to know what kind

of scan to do. His office later called and said he wanted to send me for a CAT

scan with and without contrast. Doc 4, Neph, knew all about renin issues,

hyperaldosteronism, adenomas, hyperplasia, talked to me for 2 hours....for now,

she is the captain of my ship. So, I am staying on BP meds that are doing a

marginal job of managing BP, and getting the MRI/MRA with contrast very soon.

I found out that NIH has studies that will evaluate and treat this for free.

Then I looked at MD , and they eval and treat this as well, even benign

issues. Winship at Emory has a team dealing with it as does Mayo. I applied

for an appt. at both MD and Winship because if I do the AVS, I may

consider those places. Winship is here where I live, and I go to MD

all the time anyways because my step Mom has end stage cancer and is being

treated there. It's my home away from home and I have a lot of regard for them.

My goodness, my stepmom was supposed to have 6 months to live in 2008! MD

already responded to my request.

So, guess how I got Doc 3 to call me back? I called Doc 2 (Cardio) and knew

that she wanted to consult with him, so I called her office and asked if they

had consulted and if he'd sent the labs drawn last wed.? Told her office that I

had called them Friday, Monday and again this morning but hadn't gotten a return

call, didn't know if the labs were back or not, nothing. Then, I called the Doc

4 (neph)'s office and told them the same thing and that I assumed that she would

want those labs before our consult, wouldn't she? Maybe she could get them, as

I could not even get them to call me....then the Doc himself called me with the

labs!

Amazing.

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