The last time I posted, I was getting ready with hopes of being accepted into a clinical study for new treatment and medication for those with Pulmonary Hypertension. At the time, I was really having a terrible time. I was feeling better for a little bit and then would take a turn for the worse & feel horrible. I was having a difficult time with how debilitating & unpredictable this illness can be.
Thankfully, I was accepted into the clinical study approximately 45 days ago! I can tell you that it is a double blind study. I've never been in a clinical study before, so much of procedure is new to me. The medication that is being tested is blinded so there's no way of knowing what strength medication I'm on or even if I'm taking a placebo. I can only relate that I was feeling pretty horrible when I began my participation in this study.
Please keep in mind, this is only my perception and in no way gives a medical statement on my health from a doctors point of view. Additionally, I might actually be medicated with only a sugar pill or a placebo ... So please take these factors into consideration as you read this. Additionally, I continue to take the many medications that PAH sufferers take: Ambrisentan, Sildanifil, Trespostinil Sodium Subq, and the common blood thinners and diuretics. I continue to require these medications to remain stable. Because I am not a doctor, I cannot give comment, or any determination on my actual improvements or lack of improvements or make any statement or evaluation on the same. Keeping that in mind, I can report only on how I'm feeling then .... and how I'm feeling now. It might all be perceptual .... the mind can be a strong asset or liability! The good and guarded news is that I'm feeling better now & seem to feel better with every week that passes. I've experienced very few if any side effects and even if I have, they're difficult to parse out as they are little things like an upset stomach ...which could be attributed to any number of things.
The improvements I'm experiencing are that I have an overall better sense of well-being; I can talk without being out of breath! I can walk without feeling weak & having to stop for air. Much of my feeling over all weak has subsided. I have gone out on shopping trips, and walked a fairly good distance! My appetite has returned. Overall I'm feeling so much more comfortable. Shortness of breath is less. It comes & goes but never seems to last for long. Water retention is under control I can walk further & physical activity is easier without feeling tired or out of breath. I'm sleeping more comfortably -- although, I'm still only sleeping between 4 to 6 hour a night. My persistent cough is gone gone gone...
Two weeks after taking the medication, I was up dancing short dances with my children / grandchildren. I was chasing the dog in short stints. My sense of humor has returned. My sense of purpose has been revived.
The study will last 2 years, however my followup papers map out a schedule that extends for the next 7 years.
Hang on & stay strong! Stay well & do not stop! Perhaps there is some relief coming soon!
There are several articles being written lately regarding this new hope & the studies are increasing around the globe.
Below is a link to help & a search on the web is bringing up several other newsworthy articles :