I'm on ambrisentin and for the last 2 years it was free. But it was a trip meds to see if I can help others. Now they want a thousand dollars for it monthly. Can't afford that amount but the good… read more
I was given 2 to 4 months to live, sent home on oxygen. I refused meds. That was 6 years ago. I pushed myself until I cried. Within one year, I was jogging. Today I mountain climb. Never give up.
It's not "curable" but who knows one day it might just be 🤠.
I feel very fatigued, Dizzy and short of breath most/All days. Especially after trying to do something for an hour or so the day before. I have been like this for 2.5-3 years. My pulmonologist is not treating me for it just making me do more tests with cardiologist. I live in Oklahoma and the Humidity is making it worse. I can't work
It starts when I wake up (I am on CPAP) and gets worse when I shower. If I bend over to tie my shoes or pick anything of any weight up I feel like I am going to… read more
MartyMeshek
Marty the more you know about PH the better it will be so take a look at all your tests
Your doctor probably has a patient portal and if so get connected with it and start from there
… read more
True story: for years when I would be sob staff at the varied places I have lived would loudly tell me to breathe in through my nose & out through my mouth. Then a few would be a little more descriptive & say "smell the flowers & blow out the candles". It was not until I came here that I heard "purse breathing". Now it has a name. I have not done it correctly for years. You can learn from my mistakes.
Deep breath in through your nose .. count to 2
PUCKER YOUR LIPS
SLOWLY exhale (goal at this… read more
Carol Lackey: This is correct-- but, in the beginning. I could not hold for7 & breathe out for 8. I do my breathing exercises everytime that I go to the bathroom. It is very important tome that Ido… read more
I'm learning that even the slightest stress causes me to get exhausted. Life is full of stress without even trying. I struggle to find that middle ground in handling the stress that normal life hands me and still be able to function. I am able to keep basic cleaning done and grocery shopping with my husband's help. But some 6days that gets to be too much when unexpected stress pops up.
I am so sorry. It sounds like you need yo talk to a professional therapist. It is easy yo get in a trap of hopelessness. I am not on this site alot. Please PM me when your feeling really down. Rain… read more
I have chest pain, mostly on the left side, and shortness of breath with slight movement. Sometimes it goes away in a few minutes but it usually stays several hours. Sometimes I wake up with it. Does anyone else experience this? If so, how do you manage it?
I thought my chest pain was GERD so I just went along with it until my legs were both swollen and that led me to PAH diagnosis...
I live in Canada and now that winter has arrived I have noticed it really hard to take a deep breath or walk very far outside in the cold air. I am not on oxygen is there anything that helps when you are outside?
... BarbAnderson I guess that foods that enrich blood oxygen, red beets for example, may be a real adjacent factor to improve breathing quality
what if O2 saturation drops below 90? Stop? Keep exercising anyway? Reduce intensity?
This is my first time here I hope we can help each other I have copd stage 3 with only 23 percent lung left on oxygen 24; 7 every day but my oxygen stays around 97 put when I try to walk I can't… read more
Hi everyone
I was looking over MyChart (my medical records, test results, etc.) when I came across one of the ER doctor's notes from when I was in the ER a while back, and the doctor said I have pulmonary hypertension. When I saw my primary doctor, I told her of my recent discovery and me finding out that I have PH. She didn't seem too concerned & kinda brushed it off, so I didn't say anything more about it. A few months went by (without me being concerned about it. After all, my doctor… read more
The same thing happened I went doctor hopping . 4 Pulmonologist s and 2 surgeons later. They never said. I had P H. Frustrated I went to Bostonto Mass General. The DR there retested me on everything… read more
Had that done also, it help for a while. But yes leaning forward does help
We never share your personal information with anyone.