Heart and Soul: speaking of moms

Heart and Soul – One woman’s journey through a heart transplant

Welcome to the weekly blog of a Donate Life Northwest volunteer who has graciously offered to tell  the story of her journey through the organ transplant process. She will post to this blog every Wednesday so you can ride this bumpy road with her.

Post 8

So speaking of Mom’s….I would be remiss not to mention mine. She too is dying – only hers is the really active kind. In fact, I am sitting in her room, at an assisted living facility which has been her reluctant home for the past 4 years. She will likely die today. She is no longer conscious. She too has hypertrophic cardiomyopathy diagnosed at age 84 after a syncopal episode. She too has a defibrillator/pacemaker and we used to go for double date interrogations at OHSU and then lunch or a movie.

My mom had a difficult time accepting my brother’s death. She felt very responsible and guilty for passing along this gene, although she didn’t know conclusively then that she was a carrier. In fact, some kindly physician in the 1960’s told both my parents it was a combination of their genes that caused my brothers illness.

It was very difficult for me to tell my mother I too had the disease. She was very worried. My brother was in the hospital, listed for transplant at the time. I remember she was at our home back east. My physician thought she too should have another echocardiogram, the definitive test for diagnosis. They were pretty sure she had some form of the gene, it had just yet to express itself in her. I thought long and hard about how to say all this.  My mom was 82. I said that if they found IT, how good it would be for me to know that she was alive at 82 with the disease. It would give me hope of a long life. She looked at me as only she could with her wry smile and said, “well I never would have come up with something like that” and I replied that it took me quite a long time to come up with so we were just going to go with it. Her echo was normal. That was May of 2002. This is May of 2010.

As awful as this will sound. I need my mom to move on. The last year especially has been very very difficult on her and on me caring for her. I can’t imagine having to tell her that I too need a heart transplant and will not be able to spend time with her, bring her the ensure that has sustained her. I need her to complete her journey so that I may embark on mine.

She complied on the morning of May 22.

*disclaimer*
The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator. She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website. She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.