Research & Development

Hey Dr. @brittany-foster, you would be an awesome doctor! It is true; sleep apnea can be a cause of certain types of PH.

Music is an excellent way to distract, too @ksmith610. I find music therapeutic. I just wrote about this for my column. It sounds like you have been using this time to do whatever “fancy” you. I hope that you and your wife…[Read more]

@ksmith610 I’m glad that you can find the good in what has come out of being in quarantine and maybe discovering a love for old hobbies or picking up new ones! I am grateful for this part of things too. I have tapped into my creative side which is also a big part of my writing and my everyday life as a columnist and advocate. I have a passion for…[Read more]

@ksmith610 and @jenc I am curious after reading the post from Kevin if there is more of a connection to sleep problems (whether it’s due to lack of melatonin or what) and PH. I know that there is a secondary cause of PH that is caused by something like sleep apnea and the stress that puts on the heart over time if left untreated. Wondering if the…[Read more]

That’s something I hadn’t thought of, Jen, and thanks. I will start checking my glucose when I wake up. I am mildly T2 diabetic, but very mildly; I regulate glucose with alpha-lipoic acid, something that is much used in Europe for T2D.

Since my wife and I are both “medically retired,” she from the army from her hitch between 2013 and 2017 in…[Read more]

Hi @ksmith610, read this a few months back. I found this interesting as I’ve not tried taking Melatonin myself, but know other PH patients who have.

BTW, that’s a blessing that your wife is so knowledgable about PH. You better keeper, haha

I know many of us do have issues with sleeping. @brittany-foster started a new topic about sleep or lack…[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.