on that note its always really weird talking to patients who i'm pretty sure have one of the rarer/severe diseases in the pulmonary world because they dont have the same collective consciousness/understanding about lung disease compared to, say, cancer or heart attacks or strokes and its always very awkward when i start giving someone a diagnosis and they sigh in relief and say something 'oh i thought you were going to tell me i have cancer.'
like. what is a nice way to say 'you WISH this was cancer.' like i've had to sit there with people and tell them - listen. listen. please follow up outpatient. please take this seriously. please take your medication. please please please it is so fucking critical i'm not fucking around. this has a higher mortality rate than a lot of cancers you will die from this this will kill you and not in ten years like SOON. please. PLEASE.
and then there's this instant pivot of 'well maybe i can get a lung transplant' yeah!!! maybe!!! except it not a kidney or liver or even heart. lungs are the only organ exposed to the outside world survival at 5 years with lung transplant on average is 50%. and thats WITH immunosuppression compliance. like. PLEASE. i am going crazy we need to put pulmonary fibrosis and pulmonary arterial hypertension on The Pitt maybe people will finally start taking it seriously oh my gooododdddd
I cannot highlight this more!!!
I have PAH and I'm waiting on a lung transplant, the fact that this disease is talked about so little (in my experience even within the medicl field, so many doctors don't know what I'm presenting them when I say I have PAH) it's crazy.
It is so fucking serious. We need more research, more awareness, both to improve the diagnosis (that it's often missed because of how common the symptoms are and how overlooked it is), and the life expectancy/quality of life
















