Research & Development

Colleen,
As I’ve been admitted since Sunday I can’t even begin to tell you how gross those floors are. Especially with the vomiting, diarrhea, bacterial infections, mucus, etc that is all over that place literally everywhere. Someone’e pocket book needs a good sponge bath after that.

Brittany,
I thought it was interesting and what she says makes sense. Fear of what could be lingering in a hospital is bad enough but what really makes me nervous is the ER. I’ve sat in ER waiting rooms having a panic attack watching parents allow children to crawl around the floor. Agh, I can’t even think about it!

Great article to find, Colleen! I always get so grossed out when thinking about just how contaminated things really are. We never know all that we are touching! It’s good to know the science behind making sure things are as clean as possible or at least protecting ourselves through it all! I’ll have to look into this . I have had VRE and Cdiff…[Read more]

Brittany, that’s the only thing about the clinical trials, is that you don’t always get to follow the progress and end results. Still, you have to trust that your participation is of value. I think they are important. The one about different hormones sounds very interesting. I hope you receive some future follow-up on it. Maybe an article will be…[Read more]

I participated in a clinical trial last year for women with PH. It was so interesting. The doctor was doing research on the effects of different hormones in pre-menopausal women and how it impacted the heart and lung function. They started the study because a lot of their women patients were complaining of increased shortness of breath around…[Read more]

I’ve looked for PH clinical trials for healthy volunteers. Unfortunately, there aren’t any within driving distance to me. If I could find one (especially for family members of patients), I would sign up in a heartbeat. Anything that could help future PH or CTEPH patients.

Yes, Colleen, I do have CHF. I don’t think I would be a candidate just yet, but I sent this same link to my PH nurse last week and she said she didn’t hear of it yet. She wants to research and learn more as they do have a heart failure clinic as well. I plan to mention this to my doctor at my next visit just to ask if needed, would I be a…[Read more]

Wow Jen, thanks for sharing. I had not heard of this implant, it must be fairly new? As you know my son was in heart failure and they treated it with milrinone. I wonder if it’s something they would have considered if this was available at that time. You have heart failure, correct? Is it something you might discuss with your doctors?

Beverly, thank you for backing the need for more patients to participate in research with your own experience. As they say, “Action speaks louder than words.”. We can all play a more active role in assisting with medical advancements.

Here is a link about this…[Read more]

@jenc and @beverly-duffield I keep an open mind when reading these studies as well. I have known people with high pressures than mentioned who have lived with PH for a long time. What I have found over the years is that PH patients share as many differences as they do similarities. For example, my son was considered a typical statistic because he…[Read more]

I like what Jen says. Pretty much spot on and yes, my doc says the same things and I read formal studies continually. I’ve been diagnosed for 6 years now and am doing better than I was when first diagnosed with Groups 1 and 2. Just in RVSP alone I started out at 41, then went down to 35, then 33 and at last ECHO I was at 23.8. I attribute this to…[Read more]