It’s a racing heart, low oxygen, zero spoons, stay-in-bed day. Plus the always entertaining combo of fluid retention plus burning unquenchable thirst. Ugh. #spoonie #ChronicIllness #PulmonaryHypertension #PAH

🚨Mechanisms of hypoxemia in #COPD patients w severe #PulmonaryHypertension is finally out!

A long, long work but worth the effort 😅

We wondered: why is it that COPD patients with severe PH often have less airflow obstruction and yet more hypoxemia?
🌐bit.ly/3Wnzpik
1/11

🥁Our new #review #article is out!
❓Is #PulmonaryHypertension the same or a different entity when associated with #COPD or #ILD❓
📄Find out more about similarities & differences between PH-COPD & PH-ILD
🌐http://journals.lww.com/co-pulmonarymedicine/Abstract/9900/Pulmonary_hypertension_in_interstitial_lung.81.aspx

A little teaser trailer in the thread 🧵👇
1/4

I just got an email from a #PulmonaryHypertension organization promising tips on what to eat and what to avoid, for people with my condition.

Newsflash! Eat fresh fruits, veggies, and whole grains! Avoid too much salt! WHO COULD HAVE GUESSED? WHAT GENIUS IS RESPONSIBLE?

Someone got paid to write that article and send that email.

(Oo I’m grumpy. Lol.)

I did my lung exercises AND my stupid boring leg exercises for the first time since I got out of the hospital.

I have a hard time walking from the bedroom to the kitchen. Scary. If I remember right, I was this bad before I started physical therapy but improved quickly. Fingers crossed that happens again. I don’t want to go to a nursing home yet.

#ChronicIllness #PulmonaryHypertension #PAH #PulmonaryArterialHypertension

I don’t think I mentioned that my medication pump false alarms started up again, 2-3 every night. Lol. Gonna try a factory reset today. #Remunity #PAH #PulmonaryHypertension

One day of using my new incentive spirometer and my lung function has already improved 😳

It’s almost like exercising actually works. Who’d a thunk it?

#ChronicIllness #PAH #PulmonaryHypertension

DID YOU KNOW?
🔹️25 million people suffer from PH in 🌎?
🔹️3 in 4 pts have advanced dz by the time of dx
🔹️cost of therapies $100k/yr
#phaware #RareDiseaseDay #ShowYourStripes #ShareYourColours
---
RT @PHAssociation
More than 25 million people in the U.S. and 300 million people worldwide are impacted by a rare disease. #Pulmonaryhypertension is often associated with other #rarediseases such as #scleroderma, #HHT, idiopathic #pulmonary…
https://twitter.com/PHAssociation/status/1630572366739718146

No. Pump. Alarms. Last. Night.

I don’t know why I need to put in a 100% charged battery every night before bed (these batteries are supposed to be good for 72+ hours) but that’s the solution. And it’s easy!

It has been a full week, so I’m calling it SOLVED! And the problem is not me! Happy dance!

#Remunity #PulmonaryHypertension #PulmonaryArterialHypertension #Remodulin #PAH

Walked (very slowly) in the cold fresh air for six minutes without resting!

#ChronicIllness #PulmonaryHypertension

Beep beep beep. But only once, and early (11pm) so I’d only been asleep for an hour and fell back to sleep easily #Remunity #PulmonaryHypertension

Beep beep beep. False medication pump alarm at 5am. Pump and remote wrapped in tinfoil to shield from stray RF and me sleeping in guest room because of Snoring Englishman.

So it’s me. Something about me. But only in the middle of the night. WHY WHY WHY.

#Remunity #PulmonaryHypertension

I ran errands and ate a simply enormous cheese blintz. The Beloved Englishman is digging up some RF shielding material from his workshop so I can sew a protective pouch for my medication pump. This will tell us once and for all if the problem is RF interference or not.

Hypothesis: the CPAP machine was part of the problem, but there is some other source of RF as well. But only in bedroom at night 🙄

#Remunity #PulmonaryHypertension

@ConorMahood @LucillaPiccari #PulmonaryHypertension is a horrible disease. I was diagnosed in 2003 and am, remarkably, still alive! 😳

False medication pump alarm at 3:55am. Still awake from crushing anxiety and frustration. Back to the drawing board I guess #Remunity #PulmonaryHypertension

Good morning friends!

I think we’ve solved The Case of the Mysterious Nighttime Medication Pump False Alarms! It was Dave’s unused but plugged in CPAP machine phoning home with diagnostics at night.

We need a few more alarm-free nights to be certain, but all the clues add up perfectly. I’ll fill this post with hashtags for anyone else who has this problem and will also write a detailed blog post full of useful keywords.

#PulmonaryHypertension #PAH #Remunity #Remodulin #Alarms #CPAP

@ashleygwinter I, on the other hand, had male #PulmonaryHypertension patients telling me not to dare scrap their sildenafil prescription... 😂😂😂

Excited to see our latest research featured in Massachusetts General Hospital's Advances in Motion: https://advances.massgeneral.org/pulmonary/journal.aspx?id=2395

#lung #respiratory #research #pulmonary #perfusion #imaging #PulmonaryHypertension #PAH

Excited to see our latest research featured in Massachusetts General Hospital's Advances in Motion: https://advances.massgeneral.org/pulmonary/journal.aspx?id=2395

#lung #respiratory #research #pulmonary #perfusion #imaging #PulmonaryHypertension #PAH

@ConorMahood The normal pressure in the systemic circulation (from the left side of the heart towards the extremities via arteries, to deliver oxygen to the tissues) is approximately 10 times higher than in the pulmonary circulation (from the right side of the heart towards the pulmonary capillaries, to release CO2 and receive oxygen from the lungs). When this pressure at rest, normally <14 mmHg, is >20 mmHg this defines a pathological condition called #PulmonaryHypertension.