Research & Development

@colleensteele, I can imagine as Cullen was a child, it was difficult not to be able to try new treatments. I thought that they would have more available for our PH kids by now. But, on the other hand, having adults try them first is a good idea.

Yes, all treatments have some side effects. I think it is weighing the pros and cons. Do most of you…[Read more]

I think it’s a good thing that new options are always being considered but it takes bravery to be a patient willing to try them. As you know, my son had pediatric PH. PH treatments are always created and tested with adults in mind and not children. For this reason Cullen’s doctor never allowed him to try new treatments without giving it time to…[Read more]

Oh No @brittany-foster, sorry about that wrench! I hope they can get the CT scan and figure this all out for you soon. In the meantime, I am so happy that you have that PICC line for hydration. How is that going? Are you having any issues with it? How about keeping it clean? I am sure that you are great with that part but know that it was a…[Read more]

Jen and Colleen,
Unfortunately we might have a wrench thrown in the plans again with the port cath placement. The interventional radiology surgeon wants to look at a recent CTA scan of the chest to be sure about the placement of everything and where he is going into. This might take a few days to receive and review. But, at least I have the PICC…[Read more]

Hey @brittany-foster, glad to hear that all is going well. Those heparin injections are no fun, but necessary as Colleen says. Are they having you hold them today before the port placement tomorrow?

It is rough when you have no fat, and they are just doing it in your belly anywhere. I know for me they were trying to do them in my upper arm area,…[Read more]

@brittany-foster the heparin injections are a necessary evil. I’m hopeful that your port will be placed on Friday and without issue. Thinking of you!

@jenc it’s going pretty well so far. I started my first round of hydration and therapy today. So far it is pretty easy to set up. The only thing that I will have to get used to are the daily heparin injections to keep blood clots from happening while I have the line. This is something that is new for me as well as having the IV and line in the…[Read more]

Hey @brittany-foster, I would hope that they give you some type of sedation. I don’t blame you for not wanting to know anything while they are placing the port. Please advocate and let them know about the sedation. Some are placed with just a local. You want conscious sedation. I am just glad that they are finally doing it. How is the PICC line going?

Yes, I think that’s what it was. I know it wasn’t something that was inhaled. it was something that was given through the injection to help relax and dilate the blood vessels so they could go in there with the heart cath. I am slightly worried about my port cath placement on Friday because I don’t know whether or no I will be awake or put to sleep…[Read more]

Hey @brittany-foster, yes, I hope that some PH patients will benefit from this.

As far as your heart cath, I think that you get nitrous oxide, maybe? People usually do take a nitroglycerin tablet under the tongue for chest pains. I am not allowed to take that because of my low blood pressure. I think most PH patients are told not to take it. If…[Read more]

Hi Jen ,

This is the first time that I am seeing this article. Really informative and hopefully this treatment could help a lot of others too. I have been given some type of nitrogen type injection before to dilate the blood vessels during my heart cath. Not sure what was given, but it seemed to help. My vessels were really hard to even get the…[Read more]

National Jewish Health in Denver is one of the participating sites and my doc is the Principal Investigator for the site. So after very long day (five hours on the road and all day NJH) I came home from my (first) year end tests and assessment with the informed consent paperwork. Logistics will be a problem.

So true, Kevin. I am amazed at the research and technology that we have today. I think this is one step closer to a Cure!

Hi Colleen,
Yes, I read this in my email just before coming to check-in on the forums. This is exciting news and certainly offers hope to the PH community.

This sounds pretty solid, so I cannot want to learn more.

This is exciting! I hope it works as well in humans as it does in rodents. If it does, it sounds like it’ll be a real game-changer.