Research & Development

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]

Yes, very emotional topic but something that is often discussed living with such a life-threatening disease like PH. My PH doctor often dismisses some of these studies as he says we are all individuals and our bodies react so different to therapy as well as other factors. But, I also have important things in place if something were to happen. It…[Read more]

As far as the contrast, I just have had to have tests without contrast. Although these didn’t offer the best images, it was better than just not having the tests, per my doctors. I know last year, they waited until my kidneys were at a certain level ( little improvement) and then allowed me to have the test. My CKD ranges from stage 3-4, I’m try…[Read more]

Jen,
What do they do about the sensitivity to the CT contrast? Is there something different that they use when they need to do a study with the dye or do they just avoid that altogether for you?

Too funny Brittany, I often say I’m like the ” energizer bunny” minus the energy lol

Yes, my veins are small and now full of scar tissue, I imagine that your son has this issue too, Colleen. I know with all Brittany has been through, it’s really hard on your veins.

Interesting about the contrast, I haven’t had issues with this but the last few…[Read more]

I get migraines really easily from infusions too. Something that always gave me an awful headache and migraine after is when I get a CT scan or MRI with contrast. For some reason I have an awful neurological reaction to the contrast. This is actually marked as an “allergy” for me so usually I get the IB benadryl before a scan so it helps (might…[Read more]

Brittany, when my son needs an infusion of any kind we have to go slow because of his veins and also because he just always seems super sensitive to whatever they are administering. He occasionally needs IVIG infusions and he has to be admitted for those so they can slowly give it to him over 18 hours. If they go faster he gets so sick, especially…[Read more]

I’m like a durable battery at this point haha! And you’re right about when the infusion rate is up too high. It is definitely noticeable ! They have to run a lot of medications slowly for me or else they risk the veins blowing. Happened to me a few times and I had an infiltrated IV. Especially IV benadryl or it is quite the head rush if they put…[Read more]