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This group unites PH patients, caregivers, researchers and medical professionals in a platform to discuss the latest research and medical advances related to pulmonary hypertension. Information shared in this group is public.
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Martin O'Connor joined the group
Research & Development 2 weeks ago -
Colleen Steele replied to the topic
Uptravi Safe as an Add-On for PH Kids in the forum Research & Development 2 months, 1 week agoIt’s just really nice to see more of a focus on how adult meds effect children. When Cullen had PH it was more like take the treatment and hope for the best. It shouldn’t be assumed that what works for adults and is safe for adults will be for children too. This sounds promising Jen. Thanks for sharing.
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Aunt Lizzie joined the group
Research & Development 3 months, 1 week ago-
New and untried medication of any sort is risky – especially those purporting to be for PH. I was diagnosed with ‘severe’ PH almost 8 years ago and except for a few medication problems early on, have been stable for 6 or 7 years now. Last year I participated briefly in a drug trial through my PH Clinic in Australia. I very quickly…
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Hi, Aunt Lizzie, I agree that drug trials can be risky. I am sorry to hear of your kidney problems during the drug trial. I am happy that you spoke up about your concerns. How are your kidneys doing now? I also have kidney disease and know that it can make PH that much more difficult. Which meds are you on now for your PH?-
Sorry, I tried to reply to you but kept getting a message that I’d used an inappropriate word. No bad words or negative stuff was in it, so I deleted all formatting to no avail. Can you indicate what might be considered an inappropriate word? Aunt Lizzie
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Hi Aunt Lizzie,
I am sorry to hear that you were unable to reply. Sometimes this computer system has a mind of its own. It often kicks out dashes, strange words, and other times it is nothing really that makes it a glitch. I have informed tech support. I hope that you can reply to other posts without my issues. Let me know if this continues…
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Jen Cueva replied to the topic
Would you try this new inhaled treatment if available? in the forum Research & Development 3 months, 1 week ago@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]
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Colleen Steele replied to the topic
Would you try this new inhaled treatment if available? in the forum Research & Development 3 months, 1 week agoI 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]
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Jen Cueva replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 5 months, 4 weeks agoOh 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]
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Brittany Foster replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 5 months, 4 weeks agoJen 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] -
Jen Cueva replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 5 months, 4 weeks agoHey @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]
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Colleen Steele replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 5 months, 4 weeks ago@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!
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Brittany Foster replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 5 months, 4 weeks ago@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]
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Jen Cueva replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 5 months, 4 weeks agoHey @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?
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Brittany Foster replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 6 months agoYes, 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]
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Jen Cueva replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 6 months agoHey @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]
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Brittany Foster replied to the topic
PH Patient with COVID-19 Treated with Inhaled Nitrous Oxide (iNO) in the forum Research & Development 6 months agoHi 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]
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Chris joined the group
Research & Development 6 months, 3 weeks ago-
I entered the Ralinepag Phase 3 study in February and completed the first month of drug titration this week. 6MWT and blood work look good so far. Thankful to be a part of the effort to approve this drug as the Phase 2 results and extension seem to indicate this will be a quality of life changer for many who have PAH.
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Jen Cueva started the topic
Specific gut bacteria may be linked to PAH in the forum Research & Development 7 months agoI was just reading this article about a specific gut bacteria may be linked to PH. I find this to be quite interesting as I myself have had stomach issues with PH. I have thought that most were from side effects but this has me thinking deeper. I also have talked with many other PH patients with gut issues.
Have you read this article and if so,…[Read more]
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Tatiana Zacarias joined the group
Research & Development 7 months ago-
Welcome Tatiana, to the PH Forums! I’m so sorry to hear that your father has PH. I believe the PH forums will help you a great deal. I’m certain that you will receive lot’s of support and information here plus help others based on your own experience. Let me or our other Forum’s Moderator, Brittany Foster, know if you have any quest…
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Andrew Michael Rossi joined the group
Research & Development 9 months, 2 weeks ago -
Vanessa Vaile replied to the topic
Phase 2 Trial of CXA-10 Recruiting Patients in the forum Research & Development 10 months agoNational 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.
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Jen Cueva replied to the topic
Research And The Hope of A New PH Treatment in the forum Research & Development 10 months agoSo true, Kevin. I am amazed at the research and technology that we have today. I think this is one step closer to a Cure!
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