I had to make many lifestyle changes after diagnosis as I was stage 3 in 2011. I had to stop working and became unable to do ANYTHING for myself being tethered to oxygen 24/7 and having ballooned up over 400lbs with my completely sedentary lifestyle. I had caretakers (my mom & a PCA) who did everything for me.
In July 2013 a RHC revealed my pressures were so high I was categorized as End Stage! After being unsuccessful at ANY lifestyle changes due to being so very ill, I was told that I would probably not see Christmas of 2013. My doctors refused to give up on me or let me give up on myself. My new specialty medications (Opsumit & Adempas) began to work very well in the Fall 2013.
I began making small lifestyle changes with the help of a nutritionist (low salt, low fat, low sugar, high protein diet), a little bit of 'chair exercise' and a complete change in attitude! I realized how close I was to death and suddenly wanted to be grateful for every moment I had.....Suddenly I wanted to live!!
By April 2015 the pressures had been reduced so drastically and I had all my other health conditions under control.....as well as the PAH, that I was able to have Gastric Sleeve surgery. My doctors added Uptravi to my specialty meds last year.
Now 2 & 1/2 years later.....I have lost 250lbs, been off the oxygen for over 2 years and estimated to be at Stage 1 IPAH! I STILL eat a low salt, low fat, low sugar, high protein diet rich with lots of fruits & vegetables!
I feel like a new person and have not been this healthy in 30 years!! I love my life......and every moment of it!
Keep the faith, stay positive and never ever give up!
When I was diagnosed back in 2004, I used to stay home and not be able to do anything around the home. Then I realized the more I mope around the house the worse I feel and the more prone I was to getting sicker and get infections. I decided to go out and push myself. I learned what my limits were and what I was able to do and what I was not able to do. Although there is still a lot I have to do little at a time it gets done, as well as I go out and have fun. I used to work full time and go to school full time and be a single mom. Had to quit job and school then felt better now back to work. love it. No one should stay home because they are sick you have to get to know your body and your limits. Don't let PAH decide what you can and can not do. You should be the one deciding that.
Hang in there, they have come along way the last 10 years, for my IPAH the specialty drugs seem to help with slowing the progression from original diagnosis.
You go girl!! We are living with PH, not dying of it! Keep that great attitude! I have come a long, long way myself and hope to be able to find some small consulting or part time jobs as I am just beginning to live again!
Never, ever give up hope! ((((HUGS))))
I always get the pneumonia shot now when it's time. I had both pericarditis and pleurisy before I was diagnosed in '03 and it was terrible. Now, even when I get just a mild upper respiratory infection, I treat it right away. I use inhalers, Mucinex, and Singular. I was even using both a dehumidifier and a vaporiser plus an air purifier. Anything to make it easier to breathe.