How long can this last...?

How long can this last...?

I was diagnosed with PAH this past spring after around 2 years of fainting and shortness of breath. I responded very well during my heart cath and my Dr. put me on Nefedipine. It has changed my life. I have energy, feel great, work 40+ hours a week and work out most days. I feel incredibly fortunate and often feel guilty when I read other's stories on this site. I am beyond thankful for the good health I am experiencing, but I cannot help but to fear the day this is no longer… read more

A myPHteam Member said:

Wishing you Sun shinning days. Being positive is a wonderful cure. I have never tried to depend on anything to mass my illness. My pulomnary Doctor now has me on trilegy and overnight oxygen, a rescue inhaler. They seem to help. Not liking it I'm now loving it. We are all different in Meds. It's helping me so I'm Blessed to have it. Do what makes you more comfortable. So sad for one to suffer. Bless you.

posted 4 months ago
A myPHteam Member said:

Dawn, when I was diagnosed in 2002 with PAH the Doc gave me a med n told me to go home n get my house in order for my death! Three days later I had an allergic response to the med and got rid of the Doctor! When I went home from the hospital I went to the store for food n ran into my old Doctor who I was told had moved AWAY! She has been my Doctor ever since! I AM STILL HERE! Only GOD knows when it's time for you to join HIM! NOT anyone else! I have been through Hell and back a few times! I'm still HERE! I just got out of Rehab now doing out Patient Rehab to get my strength back again! I have been on over 30 meds a day for a long Time, frequent flier in the hospital n have monthly labs drawn from a Port in my shoulder because I have a problem keeping my electrolytes where they are supposed to be. While I was in the Rehab inpatient they didn't give me all the meds I usually take everyday. I have been in for awhile now going outpatient n went to see my Cardiologist and for the first time EVER my EKG was normal. Both times they checked it! Ha! Ha! Ha! My Doctor n I decided We are going to hold off on restarting all those meds I have been on for so Long. I haven't needed O2, no SOB, am walking around slowly. Sometimes our bodies change and I believe that what we choose to eat affects our daily life more than we think it does. I am NOT saying Don't take your meds, I am saying I am doing very Good Right Now n enjoying myself! Try to stay Positive and I know that is difficult sometimes but it sure drives the people around you CRAZY 😜!

posted 5 months ago
A myPHteam Member said:

Thank you so much. I hope today is a good day.

posted 5 months ago
A myPHteam Member said:

Has any one dr told them that they have 1 to 2 yrs to live and already brought hosipis in to your home . my dr lookedat me and my husband and daughter and told us that. I am in so much pain that they got me on 3 diffenrent pain medcation plus i cant walk thaat far before i get light headed and faint .i also have live diease and copd on top of pah. So everynight. I get ready for bed and i take 13 pills and then i scared to go to sleep until ab o ut 3 or 4 in the morning because thats when my husband get up then i feel safe. God Bless and hugs

posted 5 months ago
A myPHteam Member said:

Sometimes we have to make our days into good ones when they become so hard to deal with. Try not to think about. "What if"! Live in the moment! You are using precious time worrying about things that are not happening now n probably won't! Enjoy your Life to the fullest! You are one of the lucky ones! Life is to Short to Worry! Enjoy yourself!

posted 5 months ago
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