Heart and Soul: My History

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.

My History

As I said, this, IT, is not new to me. I have been ill for 8 years. In April of 2002 I was diagnosed with Hypertrophic Cardiomyopathy. Three months later, my brother and best friend died awaiting heart transplantation in a hospital in San Francisco. He too had Hypertrophic Cardiomyopathy. When I was diagnosed, I was working as a hospital administrator. I was the one responsible for managing the contract with the local Organ Procurement agencies. I wrote all of our hospital policies regarding brain death and organ procurement. I sat with stunned and mourning  families in an ICU waiting room while our physicians explained in grossly clinical terms that their loved one was essentially dead. I made the call to the procurement agencies and made sure things went as smoothly as they could during this incredibly difficult time for the families, for our physicians and staff as well as the procurement agency and its staff. Difficult times indeed, but remarkable in a sense as well. Remarkable that one family in its overwhelming grief can give life to another family. Surreal in that now I am in the other chair.

I am an active volunteer for Donate Life NW. I mostly talk with high school students. I tell my story and I tell it from these three perspectives:

I talk first about being in healthcare (a fabulous career I tell them) and of my experiences in that ICU waiting room. I tell them that what left a lasting impression on me was that in this incredibly difficult time, if a family knew their loved ones wishes about organ donation, it came as almost a relief. That something positive could come from a usually horrendous situation. That they did not have to make yet one more difficult decision, but in turn could honor their loved ones wishes to be an organ donor. Yes, that definitely stuck with me. And it’s also the easiest way to start my presentation.

The second perspective I say is more personal (oh if they really could know how much so!).

I show a tri-fold picture of my brother: One with my son on his lap when he was 5. One at the beach during our annual trip from NY to Oregon. One with his cat, the mutual adoration society photo opp. I talk about how lucky he was to actually have been diagnosed with a life threatening illness and how it was well managed for close to 40 years. How he was a successful ad man in San Francisco – what I call his “healthy and wealthy days”. How when he got ill, he got ill really fast. How I was to be his support post transplant. How I negotiated time off to care for him with my colleagues. How we had started to look forward to that time together -  planning meals (he loved good food), planning movies to watch (at home). How cheated I feel to not have had that time together. How when I went to SF to his memorial, and got to honor his wishes about having a party to celebrate him, to scatter part of his ashes in SF bay, that I was so struck by how consistent his friends and his caregivers were in their description of him and how he viewed his illness. They all said, “he was so positive, so optimistic. This was just a little blip in his screen, he would be right back. He never lost his sense of humor.”  And I am so glad he never really knew he was dying. He died very fast, of sepsis, in less than 18 hours. I couldn’t get from east to west to be there.

So when I was leaving SF after his memorial, sitting in the airport on the way to spend a few days with my 80 some old year mom, who could not (for all the right reasons) attend the memorial, I decided to write my brother a letter. The upshot was this – If you could live with this disease (remember I am three months into my diagnosis) I can too. If you maintained humor and optimism, I can too. I know he would want this if he could only tell me. I also told him that I was going to fight this disease, and I was going to win. The only way I could figure out to fight was to volunteer for Donate Life Northwest and raise awareness about organ donation. And so that is the path I have chosen to take these last 8 years. One of looking for the gifts. And yes, many times I have had to dig down deep to find them, but they are always there. And I have chosen laughter as the best medicine, but I do so miss my brother’s jokes.

When I shared the beginning of my blog and my soul with my chosen few friends of my inner circle, I realized that I have met my commitment to my brother (so far).

*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.

Tags: heart transplant, Hypertrophic Cardiomyopathy, organ donation, transplant