I had another heart transplant patient comment, once, after reading how well E is doing “ya, but when I had my transplant, I was really sick.” It should be noted that anyone who gets a heart transplant is really sick. It is not elective surgery. He waited nine months for his transplant and was, and I quote his Doctor at the time, “circling the drain.”
I usually write a post specifically about E’s heart transplant on the anniversary date but we were otherwise preoccupied by grandchildren, and dog emergencies. I feel the need to perhaps explain what it is like for E, 23 years post heart transplant. Readers seem to like to learn about organ transplantation from someone who has been through it, rather than the nonsense shown on TV, like The Good Doctor or the Simpsons.
He is, twenty three years later, the walking, singing advertisement for the gift of life.
We had his annual meeting with the transplant team, in Vancouver last week. This involves blood work, a chest x-ray, an echo ultrasound of the heart to measure size and function, and an echo cardiogram followed by a meeting with a nurse, two doctors and a pharmacist. Every five years he has an angiogram. The angiogram scheduled for his twentieth anniversary was delayed because of Covid but he had it last year.
He used to get regular heart biopsies, both while waiting for the transplant and then monthly and for years after. For a heart biopsy a doctor went in through the vein in his neck and took a piece of his heart tissue to examine and check for rejection. If it sounds horrid. it was. He had twenty five at least, I lost count how many he had. Fortunately, those days are long gone and I understand they will soon be, or maybe already are, able to test for rejection with a blood test. Even with his angiogram last year it was much less invasive. They went through his wrist instead of the groin.
The original issue with E’s heart was a rare autoimmune disease. His body, at 43 years of age, decided to reject his perfectly good heart. The disease is called Giant Cell Myocarditis and generally presents as the flu. Most of the 63 cases in the world known at the time were diagnosed in autopsy. The team at St. Pauls decided to treat the sick native heart as if it were a transplanted heart and they put him on immune suppression drugs to postpone the inevitable transplant as long as possible. As a result, he has been on very strong anti-rejection drugs and steroids since July of 1999.
One day he was a healthy father of three kids aged 8, 10, 13. He played beer league hockey and doted on his adoring wife. To look at him now, he is again a healthy father of three, grandfather of two who continues to enjoy hockey but watches it on the TV and continues to dote on his adoring wife. He takes 17 pills a day, has a chemical peel once a year and because of the immune suppression drugs needs to stay away from Covid-risky activities.
His physical work is managed each day so as not to overexert his back, which has been weakened from 24 years of steroids. He walks the dogs for forty minutes every morning with his headphones on, singing loudly with every step.
Again, I mention he is a walking advertisement for the gift of life. Every single day he treats his gifted heart with respect and gratitude. Not a day goes by when we don’t think of the donor. There is a link on my home page to the donor card registration site.
He does need a nap every afternoon, but at this age
don’t we all
8 thoughts on “don’t we all”
Wow what a wonderful and informative story! Amazing!
Thank you and thank for reading!!
Just read this post. Such a great story!! Hugs to you both! S
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There is nothing there Dai……
Sorry; I was intending to forward the post, not reply to it. Great, concise, explanation.
I will never get tired of hearing this beautiful story. Thanks for sharing it again.
I guess you’ve heard it a few times! Hugs… looking forward to your return