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 :
I think that is just wonderful I would not even think about placebo etc for whatever reason you are feeling better. I do not know much about your condition so can not comment on it. I am just glad that you are able to live with a better quality of life and that by taking part in this trial you may in the future be responsible for helping others to do the same.
It is great to feel better, and I'm hoping that I continue to get better. My lung pressures were at 95 when they first found that I had PH an diagnosed me. My heart was very enlarged and had fluid around it. It was frightening! This was a year ago! Today my pressures are down to 75 at last exploratory (RHC) and PFT show I'm at 74% for my lungs. I continue to lose water around my heart .... but getting better is apparently going to take some time for me.
I am especially hopeful that this clinical study will be helpful to others with this condition! It's frightening to try to live and not be able to breath! One person in one of my support groups said that its quite different to have to think about breathing now, when before she was diagnosed, she never gave a thought about it, because breathing just happened!
There are so many people who just need more information to understand the illness, and we need to find a way to cure as many lung conditions as we can as soon as possible! If there's anyway I can help, I want to be there!
Thank you! I just want to keep people updated too because as research makes advances, everyone benefits. We can help each other and increase awareness & together was can all help cultivate awareness & find a cure!
What grand news for you,so pleased you are noticing such an improvement!
Take your time and I hope you are one of the lucky ones who are getting the medication,,,,may you continue with your improvements in your health conditions...and you have good days for the coming special days,,,,congrats on so far,,,and keep going,,,ttfn from Karen.
I hope it all goes well for you. I have PH with RLD and some heart issues so all together they are not helping each other. My GP saw my PH results and said they are not very high but did not take into the factor my other problems. When PR refused me as being exercise intolerant he just seemed to sulk at the fact he got it wrong.
I hope you can answer a question? I plod about when out but very often when I get to sit in the car to go I have to take in deep breaths before I can go, is this a PH common issue?
Hi Offcut - So good to hear from you! How have you been? I think about you often when dealing with this illness & also when I ask questions of my doctors!
I have had the same issues you write about! For example, I can play with the dog, or get up and dance & play hide and seek ... but then, when I just sit down, it seems I need to take deep breathers. Actually, Today has been really bad for that! I have always thought its odd and confusing how this illness works against you. One of my doctors explained to me that this happens when there is a need to off load carbon dioxide. So the way I make sense of her answer is that when I'm physically active, I'm breathing a lot, taking in air and breathing out might not be so efficient. So when I sit down, I feel a need to take deep breaths and *sigh* or breath out to expel the carbon dioxide. I've never had to think the mechanics of breathing much before I became sick.
I think PH is a very confusing illness. Its full of contradictions!! One day I can feel horrible or short of breath .... the next day I can be fine. It's taken time for me to learn that It doesn't necessarily mean that the illness is getting worse ... it could mean it's just a bad day, maybe the weather or the environment isn't so great for the condition. Today my lungs feel stiff, but then a cold wave came thru last night .... its so frustrating!!!!!!
I have been spending some time on YouTube watching Dr. Noah Greenspan lately. He is able to detail a lot of information on the topic. I've included a link below:
I'm in Australia and have COPD with its accompanying emphysema.
I think you got into the clinical testing program for Prof Malcolm Maden's retinoic acid compound - am I right?
My emphysema is pretty bad and at 82 years of age I don't like my (former) doctor's prediction that I have only a couple of years left. The mind is nowhere near 82!
I would really appreciate it if you would let me know how you got on to the trial program - who you had to contact etc.
I dearly want to last long enough to see my yuongest daughter's first baby, and at 25 she has not even married yet!
Hope your situation continues to improve as it has recently and that you have many more enjoyable years to come.
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Living With PH, (Pulmonary hypertension)
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