Ro (from vermont)
 

(((Calling Ro))) How is your Pulmonary Hypertension going? I was at the Ph experts last week, and am in a Pulmonary Hypertension Rehabilitation therapy. I'm not sure what they're going to do next as far as treatment, but hopefully nothing too serious.
Been wondering how you were doing.
I know I'm sick too death of experts. I mean nice people, just sick of the medical world.
Love Lizzie

Ruh Roh! I don't think I'm the Ro you were looking for. :D

But hello anyways!

LOLOL...Noooo but thanks for responding...I'm going to bumpidity bump for my Ro..in Vermont..
Love Lizzie

Hey there Lizzie!
 

My pressures are still "borderline" to begin any treatments. Luckily for me, they have a "magic number" in which the docs feel treatment must begin. The pulmy told me it is better to watch closely and wait till it goes just over "the line" to begin PAH treatments. I think with the MG and all of my other health issues, they all balk at adding more drugs to the mix. :(
I don't desaturate or need supplemental 02, even in sleep...so I think this may advance really slowly for me. Maybe a bonus of 28 years on immunos???

My shortness of breath has been with me all of my life, between childhood asthma and MG, so I guess in a way, my body used to lower amounts of air. :confused:

We did do some minor tweaks with other meds. I also have asthma, take Singulair and the old albuterol just gave my heart the wildest palps. So we have switched to Xopenex by nebulizer and in acute phases of asthma I am to do do 6 week courses of low dose Advair. I can't really tolerate long term steroids of any kind, as it really messes with the MG.

I had considered going off my 25 mg. of Hydrochlorothiazide, but the pulmy really thinks it has been keeping my resp. secretions under control (a Mestinon Side effect) and it's safer than than some of the other drugs out there.

I'm really sorry you are going through so much right now and totally understand your need for a "doctor vacation".
:hug:

Hugs, Ro