Quan Boatman shares her husband’s experience with ATTR-CM, from Johnny’s diagnosis and transplant journey to finding strength through faith, advocacy, and cherishing the everyday moments.
Transcript
My name is Quan Boatman. I have been married to my husband for almost 13 years this year. We met about 16 years ago. We met on the train while commuting home from work, and we tell the story. It was kind of like love at first sight.
And so my husband is Johnny Boatman. He’s a retired Army lieutenant colonel. He served for 25 years, and then he medically retired after he went through some treatments related to his diagnosis with amyloidosis.
We live a pretty normal life. My husband enjoys yard work, and I have a garden. We like movies and walks and music festivals, and he likes to golf. I like to drive the cart. So overall, we’re pretty normal. Normal couple. Except for, you know, this little thing called hereditary amyloidosis.
You know, the things that really stayed the same. Johnny and I are very much grounded in our faith and our love for one another and our support of one another. And I wouldn’t say all of that stayed the same, but it really grounded us even more, and we relied on that even more for one another.
The other thing about what kind of grew from Johnny’s disease is just reminding us to cherish every moment. Things that used to be like big deals or, you know, used to be a big issue. You know, really, we don’t worry about that kind of stuff anymore. And, you know, those are just small things to us.
Things that changed, really about the reality of realizing how precious life is.
It got to the point where by September, Johnny was in the hospital 100%.
He was admitted for the last time in September of 2024, and they said that he would need to stay in the hospital until they could find a heart donor for him.
You know, being somebody that liked to be outside and liked to be outdoors and liked to be active, to be where you’re in a small hospital room every day, all day, you’re not going home, and we don’t even know when you’re going home.
So even though he has a new heart and a new kidney, it doesn’t stop the production of amyloidosis from his liver. So it still makes it. It’s just slowed down.
And we want to make sure that all of the medication that he’s taking and he needs to be safe because he’s immunocompromised, because of that, grocery shopping has changed because everything needs to be like really fresh. Or we can only have meals for like two days. And then the third, third day possibly. But leftovers, he really didn’t like leftovers anyway. So that’s his thing. He was like, “Oh no, I can’t eat that for another day.”
We’re very sensitive about making sure that he continues to stay healthy. But overarching, we try to make sure that we live life and don’t try to stop everything because of the amyloidosis.
And the other thing that changed in our life, because we had never heard of hereditary amyloidosis, because we had never heard of V122I, Johnny and I had made it part of our mission together to do a lot of outreach.
So we have partnered a lot with the Amyloidosis Research Consortium to do webinars, to do speaking engagements, to get the word out in the African-American community so that other people know the early symptoms, the early signs, and how important it is to get treatments, because there are many more treatment options available now.
And just knowing what those early signs are, because, you know, if we knew back then, I’m pretty sure Johnny wouldn’t have needed to have a heart transplant.
