By Stephanie Hodgson
30 Jul

Heart Sisters on a Journey

Thursday, July 30, 2015

Upon returning from a three-week journey west with my twin sister, we both were on a spiritual high. We attended a retreat in central Oregon where we slept in tipis and sat around a fire each night—the most camping I had ever done since junior high school. We had gifted ourselves this journey because we were going to be celebrating our 50th birthday on the last day of the retreat. It was the most spiritual connection I have had in such a long time.

The last stop we made on our journey back home east was at my usually scheduled doctor visit to my pulmonologist/cardiologist. At the last appointment in January, I had promised to get myself together, make sure someone could reach me by a working cell phone to order my medicines, etc. So at this appointment, I was kind of delusional in my thinking that I was somewhat “better,” because not much has changed in my living arrangements, and having the doctors reach me by phone has been like pulling teeth.

My six-minute-walk was somewhat better, compared to the one in January. But when I sat in the appointment with my doctor, she was so upset with me, saying, “no, you are not better, your oxygen level is NOT good, and if you don’t start being more compliant with your medicines, you will not be able to get your medicines in the future.”

I was on that high coming back from my retreat, and feeling so uplifted, but this was a stern wake up call. A time to really think about the direction I want to take myself on from here.

I see it as a fork in the road.

Because I have been wondering how I want to spend the next years of my life. To have the heart and lung transplant operation always in front of me, as the only potential cure, seems such a difficult road. I walked home from the library the other day and talked with my sister and said that if the suffering I have had over the years is just going to be made even more difficult by being given a heart and lung transplant—where you are on so many meds daily, where the quality of life is not much different, as far as I know—then it all seems in vain.

I know that these are decisions only I can make. I have to decide.

At the retreat, I met a beautiful lady who had to have a pacemaker put in at the age of 21, as she kept passing out from about 12 years of age and on, but the doctors didn’t discover her illness (sick sinus syndrome) until then. She and I talked and cried when we heard each other’s story; she said the doctors didn’t discover a CHD with her, though. It was a real heart connection.

When I left and headed home from my appointment, I felt like nothing made sense. My doctor mentioned that I have a serious illness that is ENOUGH to deal with, and for me to stop worrying about something else I could get. I will die a young age if I don’t get myself in a better shape.

I know that life is precious and each day we are here is a gift. So, I want to take advantage of all the things that will help me continue living on a little longer. I really want to live, I don’t want to die. No one does, unless the pain is so bad they can’t see past it. I do want to work extra hard with my team of doctors and get on a better path of stability and reliability. And so it is. A new journey begins.

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