Just some updates ---
I have been doing well over all. My water retention had gotten worse tho, with water in my feet and up to my ankles, sometimes reaching my calves. I have developed Ascites -- to my understanding is common with Pulmonary Hypertension -- and many say that it is caused by the meds that are prescribed for this condition. Some others say that it's the illness. I don't know ... I just know it is very uncomfortable and disheartening.
My activity levels are good, and my recent walk test was great with my improvement of completing 55% of what any other person my age would walk who did not have this illnes. That's is a marked improvement from my last walk test. My echocardiogram showed (I believe) less water on the heart ... but the FNP looked and seemed to feel they needed a closer look because she was worried that my pressures were up.
They have prescribed me on Letaris (ambrisentan) 5mg tabs 1 per day.
I took these for one week with improvement on my breathing and feeling better there, but the side effects were horrible --- and the water retention was so much worse!!
I went off the Letaris and have not taken it for about 3 weeks. The water retention is down markedly and I lost about 7 lbs of water from my abdomen (the ascites) and my feet. I'm feeling much better.
Went into my primary doctor (family physician) for a second look and she feels to need a closer look as she is concerned it's my gall bladder become irritable.
I still freak out when I have my oximeter on and my oxygen levels drop to 91 or lower -- I try to remember that it is positional and not to panic ... I just need the positive reinforcement and reminders that this getting better is not always a straight shot ... input to retrain myself from becoming panicky.
On the positive front there has been news that there is clinical trials starting and there might be a cure for Pulmonary Hypertension within 2 to 4 years. I spoke to my specialist and she was excited that same day because she had just read so many things about fast changes in research and discoveries regarding this illness!
I pray there is a cure soon for all of us
Thank you everyone for your continued support!!