Living with PAH

May 2, 2012

After being diagnosed with PH in 1976, today is the day I am going to start writing about my experiences in the hopes of sharing what I know about living with this incurable and rare disease.

This past weekend I attended “a celebration of life service” for a young woman who was diagnosed with PH in 2010. She had received a lung transplant about a year ago. She was an amazing young woman, 26 years old, at the time of her death. In December we were in the hospital together and I got to spend some time with her and her Mom. I knew she was in a serious battle for her life. She was such a fighter.

How can I honor her? As hard as it is to not wonder “why” her and not me, I know that I must not go there because it takes too much energy away from what is truly important: to keep fighting this battle against PH. That is what I must to do honor this young woman and her fight.

It is so upsetting to hear of another losing the battle, but at the same time it tells me that the work is not done. We, the patients, and caregivers, friends, family, doctors, nurses, everyone who is affected by PH must work hard to raise awareness and help in any way we can to find a cure for this incurable disease.

In the new year, after returning home from a 19 day stay at MMC, I began to regain my strength, and look once again to how I would get back in the fight against PH. A couple of opportunities came to me and I was headed to San Diego, where I took part in a 2-day conference. This event sponsored by Gilead, a pharmaceutical company which has PH medications, was very enlightening. I reconnected with several other patients who I had met from past conferences. I made some new connections, as well. There is much going on to help patients.

Jeannette in San Diego

I was invited to speak at a Forum in Hartford, CT in April.Jeannette in CT Once again I was able to reconnect with patients that I had met and put names to some people I had only talked with and never met. While I was delivering my talk I noticed that two people in the audience had tears filling their eyes and dripping down their cheeks. I knew that I would have to contact them and talk with them before the meeting ended. The first woman was in her late 50’s, and had been diagnosed this past November. As we talked I learned she was one of five sisters. One of her older sisters had passed away with PH in 1976, “the year you were diagnosed”, she noted. Her younger sister passed away with the disease just two years before. She had many feelings about what she would face and what her outcome would be. She told me she had gained some hope from my talk and my longevity with PH. The second woman I talked with was only in her early 30’s, had a husband, and a little boy. Again my story gave her hope for a future she was not sure she would have.

I was very unsure when I started telling and sharing my story to others. How would it be perceived? Would people question my motives? After my first talk at the 2004 Conference in Miami, I started feeling more comfortable and not worried about what people may or may not be thinking. The response and one-on-one talks with those in the audience after speaking gave me the confidence to begin to believe that what I was doing was helping other patients and their family members to see that there is a life with PH; one that has to be adapted and adjustments made to accommodate all the changes that PH exerts on our lives.

Attitudes make such a difference in our lives. We know that we will have good days and bad days. The hard part is learning that we have to accept them for what they are; a nuisance and a bump in the road, but one that we can overcome and move on.

I am preparing for several new adventures in the next few weeks and with summer coming, golf we be a nearly daily ritual for me.Golfing

I am starting this blog now in the hopes that I will be able to connect with many other patients and make an impact on the hold that PH has on each affected by this disease.  More to come…


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