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Go to the question and answer may be there. Have a great day.
How do I change my location on my profile so I can concentrate on meeting PHrs close to me?
I was in Alabama, now I live in Zephyrhills, FL
How often are right heart catherizations done. I wonder as I feel I am getting worse. Has anyone had them done more than twice and it’s it used to check your severity of the disease?
I have had 2 but they did them both because of heart issues. They were able to check my pressures so that helped with my PH diagnosis.
I have very high blood pressure. Without medication it averages 190/107. If I take my blood pressure medication as directed and my blood goes into the normal range my chest start hurting and develop an ectopic heart beat. It got so bad I went to the er thanking I was having a heart attack. I was wondering if anyone else has experienced this and how they treat hypertension without those side effects.
Have you been diagnosed with chronic resistant hypertension? There are meds that will drop your BP immediately to a safer level. Hopefully your doctor will prescribe something! The chest pain… read more
It’s working wonders, along with two other drugs, but, because it’s a subcutaneous drug, with changes of a mix every three days with a pump, it’s alot to cope with! Anyone?
About a month ago I thought I was losing my voice but it never completely goes away, and it just stays at this high pitched raspy voice. I also am running out of air when I’m trying to say something to someone.
Oh my God I have that off and on I didn't know it was part of this.... And yes as I worked at the front desk there at NextCare and I was trying to check patients in and talking to them and I had a… read more
So he doubled my lasix and I have been cathed since monday. Let's say 60 hours now and I have got off 10 liters of fluid. When do I know if I get to much off at one time? I am already feeling so tired and week. The swelling has gone done and I can now move my hands and feet.
I was told that any body position you change, it must be done slowly and gradually. I get dizzy sitting down too quickly plus my heart races and it's because of the change in body position and the… read more
The hot flashes and flushing from tadalafil is awful. Worse than menopause. I was diagnosed Jan 2021. On tadalafil since March of 2021. Still have terrible hot flashes. Actually wakes me up at night still.
Does it ever get better. I know it’s working SOB is better last set of labs and tests were great. Also on Opsumit as of Dec 2021 ( changed from Bosentan Mar 2021 to Dec 2021). Added Uptravi March 2022. Still titrating only at 400mcg in am and 600mcg at night. The side effects are no joke… read more
This disease is hard on relationships. It not only changes our lives but changes everyone else’s around us as well. I know my friends and family can get frustrated too. I would like to help them understand what it is like living with this but do t really know how. I try to explain but don’t think I’m getting anywhere. Ideas?? Thank you
Hi, I'm new to the group. Have you considered going on social security disability? I don't know if you are in the USA, but if you are, find an attorney who specializes in disability claims. It's a… read more