When I first heard I had PAH,I felt totally overwhelmed and went into denial.The information the doctors gave me that day was too much and way too scary.I had just had my first cardiac cath.I thought they were mistaken.Not me ...No way !
The first thing I did after that was to cry.I had also been told it was very rare and the only other person that had it in the area,actually lived in Massachusetts and she had just had a heart/double lung transplant.
At that time there were so few of us in the country,I relied on the people I met at the transplant support group.There were no groups or even websites for Pulmonary Hypertension available.I felt very alone with my diagnosis.Even so I stayed connected to these people because they gave me hope.Then my brother in New York was diagnosed followed by my sister.We had each other to talk to,but that was a few years after I was diagnosed.
Today I am a co-leader to a PH Support group.I have many friends all over the U.S. with this disease.I no longer feel alone and I my life is full of hope !!
The best advice I heard from everyone was to listen to my doctors and fellow patients.Take extra good care of myself and change my life style.It took me awhile,but that is exactly what I did.I cleaned up my act,lost weight,started to exercise and lived life to its fullest a day at a time.
That was over 20 years ago and I still try to live my life my by this advice .I exercise,keep my weight in check,listen to my doctors and stay very connected and involved with my phfriends and phamily.They have saved my life many times and I love them all .My brother passed away 2 years ago from this illness He was a fighter and held on for a long time. My sister is very strong and a fighter as well.We stay in touch with each other and share news that we hear about PH.
For awareness month this year,I am reaching out to more doctors with information on PAH.I am trying to get my story published in a local medical magazine and I continue with the advocacy work that I love so much.My personal goal is to reach out to 5 primary care doctors with info on PH and try to get them involved with PHA.I have already done this with one,4 more to go.
If you have PH or know someone that does,try starting a blog or join the big PH family on face book.Spread the word...it's awareness month !