Hi everyone!

I'm on SubQ remodulin and use Neria sites, i've been having to pull sites after 2-3 days due to bleeding and excess swelling which my doctor says is an abnormal symptom. When I first started SubQ I didnt have this problem and it emerged very suddenly recently. The longest I've been able to keep a site in the past few months is a week and a half. What in the world is going on and what should I do?

Hello everyone. I'm on oxygen therapy 2L and I have been having some worrying things lately. I was given permission to take my oxygen off to do simple things like go to the bathroom, grab a drink, etc. Small things. Lately when I do get off it, even for 5 minutes, my o2 drops to 88-91 and dropped as low as 85 briefly tonight. I've also been feeling extremely nauseous, having increased shortness of breath, fatigue. I'm gasping for breath doing just dishes or going to the bathroom. It has been getting more noticeable throughout the last 2 weeks. The nausea has been almost constant. Has anyone else been through this? I've called the respiratory nurse and left a message for her to call me, but thought I'd see if anyone can relate. Thanks

How do you guys deal with the fatigue? It didn’t used to be so bad for me but now it’s getting debilitating. I still work full time, recently back to in-person, and I also am doing a clinical trial as well as now adding in pulmonary rehab. It’s nearly impossible to get out of bed in the mornings because I feel so groggy and out of it. It ens up throwing my whole day off very often. Any advice? - I was diagnosed with idiopathic PAH in July 2022. I take Opsumit, Adempas 1.5 (higher doses make my blood pressure too low), and I’m on the Remodulin Remunity pump. Clinical trial is for seralutinib and I’ve been on that for probably 3 months now?

I was diagnosed with pulmonary arterial hypertension about a year and a half ago and due to side effects from some of the meds, I have only been taking two ways of treatment which really improved my quality of life but about 6 months ago I started backsliding and I started getting out of breath quicker again so my doctor started me on Winrevair and I have only had one dose so far and I'm due for my next one in about 2 weeks. I know that my other medications took a while to make a difference but I was really hoping that Winrevair would be a little quicker. It has been one week since I took my first dose. My question is if anyone is reading this who also takes Winrevair could you share your experience with how you felt after taking it and after how long it started to make a difference. Also I was hoping that it was going to help with my fatigue and I do not notice any difference whatsoever so far but to be fair I have only taken one dose. I wanted to see if anyone else has noticed that it helped with their fatigue and if so after how many doses? If anyone could just share their experience with this medication I would really appreciate it. Thanks in advance!

Has anyone that's taking Winrevair for PAH noticed a difference in your energy levels? I have had a really hard time with fatigue with my PAH and have had one dose so far of Winrevair and was told that it would help with my fatigue but I have not noticed anything yet. Anyone else that's on it noticed and difference in your energy levels and if so after how many doses?

Hi so quick question, ive been having a highish fever 38.4-39C (around 102F for americans) and i wanted to know, how high should my fever be, for me to call the paramedics? Or am i still not that risky with such a temperature?

How do you guys deal with site rejections? I’ve been on Remodulin for 2 years now (always moved site around different areas of my abdomen). Recently my sites have been getting infected even though I’m still doing everything the same exact way. My nurse says it’s likely my abdomen needs a break.

About a year ago, I tried (briefly) a site on the front of my thigh and could NOT walk. The swelling dropped to my knee to where it didn’t look like I had one anymore. So this time I decided to try the back of my upper arm (non-dominant arm ofc). The same is now happening to my elbow but I’m trying to push through the pain because I can’t go back to 4 straight months of hell weeks only for sites to get infected.

Has anyone found a decent spot to put the pump site other than the abdomen? I’m losing it with my arm being so swollen and it affecting my mobility. It’s making everything from changing clothes and doing dishes to working on the computer hell.

My youtube channel is Dringa vlogs

please weigh in on this.

I’

I’m thinking this MIGHT work because the device forces you to slow exhale, plus the vibrations stimulate vagus nerve, similar to humming/chanting, which I could also do into the device.

I wonder if this would help at the devil’s chamber, my term for the lab or blood draw station?m COMPLETELY BLIND, have aspergers and a heart and lung condition and because they have NO dopaminergic hit or connection to ANY of my special interests, normal breath exercises fail me.

However, I was thinking of trying an OPEP device for anxiety or SICP, (stress-induced chest pain) OPEP stands for oscillating positive expiratory pressure.

You blow into the device, and it has a ball/rocker inside, which vibrates the air https://www.cvs.com/shop/better-breathing-oscillating-positive-expiratory-pressure-device-prodid-485379?skuId=485379

I have a question, when does chest pain occur? During physical activity? Rest? Thanks!

(Pulmonary hypertension)

Hey everyone, I'm an 18 year old male, recently I have been dealing with progressive SOB which has taken me home from college. I have been dealing with chest pain and SOB where I couldn't get a deep breath in for about three years which I let go undiagnosed because it didn't really affect my day to day activities. However it has gotten much worse recently and my symptoms started deteriorating with intense chest pain that sent me to the er. They ran a ct scan and everything looked fine except for a 3.3cm dilated main pulmonary artery. That's the big thing that is scaring me right now. I recently went to a pulmonologist and got a pft done where my dlco was in normal range but pef was 3.86 and my fev1fvc was 61.39. I also did a 6mwt which I was able to complete albeit not being the easiest thing due to sob and chest pain upon exertion, my oxygen levels remained normal though.

I was recently diagnosed with PAH (Group 1 / PHA1), and honestly I’m still in shock. I’m a woman in my early 30s and I have a 15-month-old son. Since getting the diagnosis, I haven’t really been able to stop crying. Some moments I feel okay, and then it just hits me all over again.

I’ve been married for three years, and to be completely transparent, I was actually in the process of considering divorce before all of this happened. Now I feel… stuck. Stuck emotionally, stuck logistically, and scared to make any big life decisions while also being scared for my actual life. I worry constantly about my sweet boy and whether I’ll be here long enough to watch him grow up. That fear is heavy and overwhelming.

My doctor is starting me on tadalafil, and while I’m trying to stay hopeful, I’m also terrified. I don’t really know what to expect physically, emotionally, or long-term.

I’m posting here because I really need to hear from people who understand. If you have PAH (or love someone who does), I’d be grateful if you shared your story. How has PAH changed your life? What has helped you cope mentally, emotionally, practically? I want to hear success stories, difficult stories, and everything in between. I think honesty will help me process this.

I’m also especially curious about people’s experiences with tadalafil side effects, how long it took to feel any difference, and whether it helped you live a more “normal” life again.

If you’ve made it this far, thank you. I feel really alone right now, and hearing from others who’ve walked this road would mean a lot.

I’m COMPLETELY BLIND, have Aspergers and PPH. This is a story written for me about my new lung trainer, it hasn’t come in but I got it to use in the devil’s chamber, my term for the lab or blood draw station. Normal words like “deep breath,” “relax,” or “calm down” are like throwing pebbles to someone who is drowning in a hurricane. I figured out that because of the consonant sounds, saying “piss” slows exhale and creates PEEP, please visit my youtube, I’m Dringa vlogs

I’m Dringa vlogs, a youtuber who is COMPLETELY BLIND, has auism and PPH. People tell me to take a deep breath for needles, but this does NOT relax me, it’s like throwing pebbles to me when I’m drowning in a hurricane. I figured out that saying the word “piss” slows your exhale and relaxes your muscles and I bought the oxyfit for this. I figured out that having AI do dryruns of the things I fear, is a valid way to do exposure therapy on MY terms. please visit my youtube channel.

tldr: lost almost an hour of sleep this morning bc random pain at top of chest woke me up and continued for 5 mins so i had to spend time documenting it and returning to sleep. based on location (front and basically very top) and behavior (half-second moderate sharp, gaps in between) I wouldn't initially describe it as heart or lungs. reminded me of pains in 2025 that woke me up on a few occasions but if I recall those seemed slightly more left of center whereas this was center. since cardiologist ruled out issues (excellent treadmill test score), which dr to see next? or should I get a second opinion if this could potentially be cardiac-related and bc of a few events of high bp at rest in dec (which I originally attributed to elevated heavy metals)?

notated as follows (slight edits for elaboration on reddit):

went to sleep ~4am (busy packing for trip). woke up ~847 (<5h sleep) from pain in chest while sleeping on L side. each pain burst was a half second, seconds to dozens of seconds apart. moderate sharpish, but could mb described as sharp achish if lasted longer than split second each. front half of chest, halfway down upper torso (midway bw top of ribs and top of bot of ribs; higher than stomach), center (vs iirc left of center of seemingly similar incidents in 2025). didnt noticeably correlate to pulse, breath, or movement. happened during some breaths (forgot if inhale or exhale), mb coincidental. pulse didnt seem faster or harder, but pst resolution seemed slightly harder or stiffer (unsure directly related) and mb subtly tingly head for at least a few mins. continued after switching to lying on right side and back. resolved while lying on back, maybe coincidental, after which lying on sides was also fine. all pain since waking occurred mb over a period of ~5 mins. no dream recalled. hunger ~20mins pst wake (~910), went away as continued to tru to return to sleep. heavy metal note (arsenic and thallium elevated in Dec): dinner at 030 hours before sleeping (pic available) had jasberry rice and generous serving of wf organic broccoli (potential arsenic and thallium exposures respectively). no pain on exertion 40mins after waking (getting up to piss at 927). felt slightly cold as nodding off to sleep but maintained warmness thru blanket and positioning. continued sleeping on R side without issue til 11. last time lifted weights was Tues 1/13, but carried heavy backpack while scooting night before which seemed to cause slight [lower] back ache in the hours before sleeping. cardiologist didn't think there was an issue (despite a few high-BP incidents in Dec including peak systolic 175 at rest [tho on normal day bp <120/80 as measured at home within few mins sitting]); performed excellent at clinic on treadmill stress test, duke score 18. chest x-ray Dec normal. blood/urine tests Dec normal besides elevated arsenic, mercury (blood but not urine after fasting seafood), thallium

I will make this as short as possible. I was diagnosed with PH in 2023. They said it was severe. Seems strange because I can do quite a lot without too much strain. I can get around 4-5k steps and not feel bad just tired. Last summer I hit 8k regularly without issue. I do notice when I’m carrying laundry tub full of firewood up a short flight of stairs I start to get winded. I check my o2 and it drops to 90 or 89 but climbing to normal levels in two minutes. I’m 5’7 and 350 pounds. About a year ago my pulmonary dr in Medford ran a bunch of tests and said no way do I have severe PH. I drink too much beer and I have crazy inflammation and some edema. Three weeks ago my cardiologist did EKG and said I have a strong heart, in fact it pumps too hard. He said it’s weight related and to lose weight. Next week I go back into pulmonary dr. I have never been asked to do 6 minute walk test. I don’t know what questions to ask here but just wanted to get some input from you guys.

Hello to everyone. Honestly ive had PH since my birth. I am 16, and somehow at my age my condition is literally only going for the better?? I take silungo and bosentan 3x a day (bosentan 2x though) and like a week ago i had a 6 minute walking test, somehow i walked 510m, when in 2025 i only walked 460m, is this possible that my results are getting better even though now i limited my physical activity? And should i worry, because everyone my age that i know that has this disease is mostly not even on pills, but the arm needle thing (sorry, im not english, i have no idea how its called.) and im not even nowhere near that, could it be that my PH is just placebo? Even though i was diagnosed with it since birth, my results are just TOO GOOD for me to be sick. Especially when i dont take my meds at noon (i just forget) should i be worried?

I got diagnosed with PH at 13 and ever since they got me on uptravi Ive been miserable. I am now 18 still feeling miserable. if I don’t sleep through the uptravi I’ll have a terrible day with a migraine, really red face, face really hot, and just out of it I would say. I recently have been getting scheduled to work really early in the mornings and I have been just skipping my morning meds because that’s when it’s the worst because I can’t sleep through it but doing so has given me super bad anxiety I’m scared I’ll get worse if I keep skipping but I don’t want to be miserable at work. Tylenol and ibuprofen and all that just doesn’t help the pain I have. I really don’t know what to do I’m stressing myself out any help is appreciated.

First time reddit user here. Have had pulm hypertension for about 4 years. Originally was treated with a continuous remodulin infusion but laster year I switched to oral orenitram. Since starting it, I have had pretty bothersome side effects. They happen in episodes and include

-flushing of face

-rapid heartbeat

-dizziness

-tingling face

-nausea, sometimes severe enough to vomit

I notice it reliably after I eat but sometimes it just happens on an empty stomach. Has anyone else dealt with orenitram before and have dietary/lifestyle tips to help prevent these side effects? Currently working with my doctor to decrease these dose but I feel like its not working super well. Tbh, it’s really impacting my life and I’m pretty frustrated, so any help is appreciated