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Donor saves man’s life after rare disease causes heart failure

Author Sarah Cart and her husband Ben, whose health issues she chronicles in On My Way Back to You (Photograph supplied)

In 2017 Ben Cart learnt he had systemic sclerosis, a rare condition that can cause the skin and connective tissues to harden.

In his case it expanded into his organs and shortly after doctors diagnosed congestive heart failure in 2018, he received a pacemaker. Within months it was obvious it could not do what his body needed.

By the end of 2019 things were looking pretty grim. Mr Cart was on a transplant list, but dying. Two weeks into the pandemic, his kidneys shut down.

An organ donor saved his life.

It is a story his wife Sarah has shared in On My Way Back to You: One Couple’s Journey through Catastrophic Illness to Healing and Hope, a book published by Simon & Schuster in April.

Her hope is that it inspires people who might not be aware of the global need for donors.

“As each month passed, she felt her best friend, this brilliant businessman, successful entrepreneur, and energetically engaged and organised father to their four sons, slipping away, until eventually they received devastating news: Ben needed a heart transplant,” the synopsis reads.

“But that was only the tip of the iceberg. Two weeks after the Covid-19 lockdown, they realised Ben’s body was shutting down and his only hope was to get on the list and get that transplant now – in the midst of a pandemic. And that wasn’t even half of what was to come.”

Ms Cart spoke with The Royal Gazette ahead of a visit to the island with her husband this week. It was a homecoming of sorts for Mr Cart, a Bermudian who was born and raised in the US but travelled here frequently as a child with his mother, Elizabeth Zuill Cart, to see her brother, Cummings Zuill, and other family members and friends.

As an adult he always found time to return. And then he fell ill.

“We were told at the time that it was incurable and it was going to affect different parts of his body,” Ms Cart said.

“They put him on immunosuppressants right away, because one of the things that it typically does is affect the skin with something called scleroderma, it hardens the skin so it feels like a mannequin. And then the disease started to migrate through his body from organ to organ.”

Within the first few months of the diagnosis, Mr Cart “lost 30 pounds without even thinking about it”.

“It went to his [gastrointestinal] tract, then it got into his joints and his tendons; he couldn't hold things. At one point he had sudden and severe hearing loss,” his wife added.

Ultimately, Mr Cart regained his hearing and his joint issues were resolved. Although severely scarred, his GI tract also improved.

The real challenge was in finding a solution after the pacemaker failed.

“We started trying to get him on the transplant list and we were in the midst of that when he was obviously dying, in the winter of 2019, 2020. His kidneys shut down two weeks after the pandemic was declared and he ended up in the hospital in Fort Lauderdale,” Ms Cart said.

Because of the protocols then in place, she was not allowed to visit and “he was just getting sicker and sicker”.

“They put them on the transplant list on April 3. They took them off the list because he was too unstable on April 10, which happened to be Good Friday. They put him back on the list on Easter Sunday. And four days later they were about to take him off the list again when a heart became available.”

Ten weeks after the operation, Mr Cart returned home with a new heart and in a wheelchair because of a broken hip, the result of a fall before his hospital admission.

In hospital the then 60-year-old had medical care 24/7 but because of the social restrictions then in place the Carts were unable to have anyone in their home.

“We've come out the other side and we just know we're so lucky. Four years ago we didn't have Covid tests that gave results any more quickly than three or four days. So the only people who were going into the OR were people who were dying – either because they'd been in a car accident or had gunshot wounds, or they needed an organ – because they needed to know you were Covid-free. So he probably would not have been a candidate if it hadn't been for Covid, he certainly would not have been a candidate if they’d known about his hip,” Ms Cart said.

“We've written a letter but we've never heard back from the family whose decision in what has to have been one of the worst times of their lives, turned into our miracle. But we are so awed and grateful for their strength at that time.”

At the back end of all that, the former journalist decided to write a book using the notes from her journal and the e-mail updates on her husband she regularly sent out to a close circle of family and friends.

It gave her all she needed to complete a “pretty raw” manuscript that friends encouraged her to get published. Initially she worried that her husband might not be so enthusiastic about sharing his story.

“He pointed out that on his journey he had support the whole way. He was the focus. Everybody was taking care of Ben. And so this was a way for him to help take care of me – by letting me write the book. And he's just been really wonderful about it.”

An acquaintance in Florida introduced her to Glenn Plaskin, a ghost writer who rearranged the order of the book, wove the voices of their sons into the narrative and guided her to getting it published.

He also proposed Forefront Books, a company which operates under the Simon & Schuster label.

“[Glenn] said: ‘We can send [out] the manuscript and we can sit and wait but most people will reject it because you're not famous. The other option is to go through a vanity [publisher]’.”

She and her husband both agreed that the cost attached was worth it if it led to even only one family making “the decision to donate organs or one more family getting an organ”.

Now that the book has been published, Ms Cart hopes that caregivers everywhere find it helpful.

“I have a good friend whose husband had a stroke 2½ months ago and in the middle of the night she's been reading the book and says it helps her to know she’s not alone.”

Like many caregivers her friend felt “isolated and overwhelmed” by all the decisions.

“The decisions are huge and small all at the same time: do I have time to get gas in the car before I take him to the hospital tomorrow for his check-up? He's coming home in a wheelchair. Is he going to be able to walk four or five months from now or should I be putting the house on the market and getting some place that's [wheelchair accessible]?

“It’s stuff that keeps you up at night and as a caregiver that doesn't do you any good because you need to be rested and well rooted to tackle whatever is going to be thrown at you the next day.”

Sarah Cart’s book, On My Way Back to You, is available onAmazon. For more information, visitwww.onmywaybacktoyou.com/

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Published June 20, 2024 at 8:00 am (Updated June 21, 2024 at 8:13 am)

Donor saves man’s life after rare disease causes heart failure

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