Research & Development

Oh, @cdvol3gmail-com, what an extraordinary vision of you sailing and swimming again! That would be incredible and exciting for you to look forward to early next year.

Can you believe we are almost halfway through 2022? Unbelievable! I’ll be crossing all I can and praying this is an option for you, my sweet PHriend.

Thanks for your encouraging…[Read more]

It really be great if this could work for me – get rid of the IV. go swimming and sailing again.

I am sending you positive vibes that you will be well enough next month to have an echo and the echo show improvement!! Please keep us posted good friend. Big HUG.

Hi @cdvol3gmail-com, no worries; I wanted to let you know us at PH News will be zoned in, awaiting the updates from the FDA on this one.

Yes, this treatment could benefit others when added to orals or others transition to it. Thanks for the reminder that, like all medications, it, too, will come with side effects.

I wouldn’t mind this…[Read more]

Hi, cannot believe I missed this article. I was told about it by my Pulmonologist and saw anbarticle in The New England Medical Journal.

For folks on subQ and the IV Hickman line, this could really be a game changer plus sny PH patients on orals trying to balance th we sude effects. Of course these meds have their own side effects that may not…[Read more]

Hi @cdvol3gmail-com, I wanted to tag you here. Before we moved, I also heard a talk about the positive results of sotatercept at a PH support group in Houston. The research nurses at the Houston PH Center also thought the benefits of this new treatment would be a favorable option for many of us in the PH community.

Incredibly, doctors are…[Read more]

I wanted to share a recent column by fellow PHer and columnist Anna Jeter. Anna writes about things to consider before one agrees to participate in a clinical trial.

Clinical trials are essential for improved treatments and, eventually, a cure for PH. However, Anna reminds us to weigh the pros and cons and not to forget the personal impact it…[Read more]

Hi @colleensteele, yes, this new diagnostic tool sounds promising. I would love to experience this versus an RHC. I would want to compare the findings of the two to see how well they align with numbers.

You can find out more from their website, including a picture. Ask, and you shall get my FWW, Hehe.

Sensydia Cardia Performances…[Read more]

@jenc it sounds like this has so much potential! I wonder where they go from here with the study and how soon we could possibly see it being used in hospitals. It’s wonderful that they ended up doubling the amount of people they originally planned on for the study but I’m guessing they need to develop the study further before the device is…[Read more]

Hi @valeriekv, I also struggle with proving I’m human at times. Those things are always very sensitive; however, most websites are using that now to keep spammers away. You’re not the only one who struggles with this, hehe.

I do think PH and metabolism are related. Because it’s vascular and in our cells, this would be connected to our metabolic…[Read more]

Hi, @colleensteele, Hi, @jenc!
Thank you for your kindness! It’s very nice.
We don’t have any insurance or similar things. If I buy an oxygen concentrator, then I will buy it at the store. Now I have a small aerosol can with oxygen for emergencies (when I have very low saturation).
Thank you for sharing your email addresses! This may be necessary.…[Read more]

Hi @valeriekv, I’m sorry about your continued struggles with your MS treatment and oxygen sats. As @colleensteele mentions, wouldn’t this be covered by your insurance or medicare? Either way, you will need an order from your medical team, correct?

Yes, you are right, Valerie everything is interconnected inside our bodies. For those physicians who…[Read more]

Yes, thank you @jenc for sharing this informative article!

@valeriekv it’s so good to hear from you but I’m concerned to hear how much you are struggling with your health. Hopefully your doctor can request a stationary concentrator so that it will hopefully be covered or at least partially by insurance.

We are here for you through the ups and…[Read more]

Hi, Jen!
A very interesting article. I think this information is intended for those people who got LH not at birth, but later. But this article proves again that everything is interconnected in the human body. Last year I visited many different doctors and only two of them believe that everything is interconnected in the body. Thank you for not…[Read more]

Hey, y’all, I wanted to share a link that may be helpful for those interested in reading more about metabolic disorders and how they can relate to PH.

This article was shared in Advances in Pulmonary Hypertension in 2021. You can read more here.

@valeriekv, I haven’t seen any posts by post in some time. How are you doing?

Thanks, @colleensteele, for your thoughtful encouragement. I love working with clinical, too. Connecting someone with a rare disease to a potential clinical trial and knowing that this may improve their lives and all those around them brings joy to my heart.

I’ve found so many new passions since I started working with BioNews. After being unable…[Read more]

How many of you were aware that @jenc in addition to co-forum moderator and PH columnist, also assists the BioNews clinical team? She briefly mentions it the column she just shared but I assure you, she puts her all into that as she does here in the forums.

It’s such important work! Participation in clinical trials is also important and are…[Read more]

Hey, y’all, I wanted to share my column this week. It’s about the importance of clinical trials in our PH community.

Please give it a read, and let’s talk about it.

Raising Awareness About the Importance of Clinical Trials

Have you participated in any clinical trials for PH? Has your PH team mentioned any clinical trials that you may benefit from?