Susan Crowe is in her early 40s. She found out her heart is weird. About 1% of all heart defects are like hers. Her heart is not constructed like hearts in most people. And most such heart conditions are diagnosed in early childhood. By the time she learned she had a problem, Crowe was an adult. Just a handful of adults have ever been diagnosed with this.
Living that long with the odd valve formation also led to several aneurysms. And not too many places do the surgery to fix these things, just one in fact — the Texas Heart Institute. They do a LOT of heart transplants. Crowe used a text-to-voice app to communicate with WGLT because she's on a ventilator.
In her case, the institute offered to fix Crowe's conditions pro bono.
"Because of the rarity of my heart defect and my unusual anatomy, the doctors here could learn so much, which in return would help others by advancing heart medicine. We have already seen that happen in the weeks we have been here," said Crowe, who traveled to Houston in April.
She didn't have family members who were able to represent her, so she went with a friend, Mary Dunlap, who said the surgical team and researchers were like kids in a candy store at the chance to learn new things from Crowe's case. They did multiple operations at one time, including a bypass. Now, one of the big risks of a transplant is a heart attack after the procedure.
Dunlap said Susan's anatomy lent itself to addressing that problem even though she did not get a transplant.
"One of the fellows here is working at developing a small pillow to put in high-risk patients under their sternum and inflate it to take that pressure off people's hearts who are at very high risk of a heart event. And being part of that process is amazing," said Dunlap.
Crowe has had some setbacks: an infection, the surgery damaged a nerve that helps operate the diaphragm, and other things. It makes it tough to get off a ventilator until the nerve finishes healing. There was progress. Normally, Crowe would go to a rehab facility which would not be free. Thus enters an insurance company in decision-making.
Stuck in Houston
Dunlap said "respiratory weaning" requires microanalysis of muscle action to help you strengthen breathing muscles. ICUs are limited in that way. And there aren't too many rehab centers in Illinois or Texas that can do it. Plus, the emergency medical service airfare to get Susan to a place in Illinois is ruinously expensive — on the order of $30,000, according to Dunlap.
"It seems like anytime we get close to her getting in somewhere it just falls through. And so, we just, like a lot of people here and in other hospitals, find ourselves stuck," said Dunlap.
At one point, Dunlap said they were even trying to get an intergovernmental agreement between the state of Texas and the state of Illinois to get it done. They had thought the operation and recovery would take 10 days. A very long story short, 70-plus days out, Dunlap said her friend is still in the ICU in Houston.
"If the person who wrote 'Groundhog Day' got together with the author Kafka and did a collab that would really describe the experience we are having," said Dunlap.
They've hired a health advocate and a psychotherapist to help. Crowe said it's still wearing.
"It's definitely tedious, especially since I want to go home. I miss my dog. I miss my work at Under the Ground. I miss the library. I miss my home and my friends who are like family to me," she said.
Crowe is on the autism spectrum. The daily sameness in the hospital can be a comfort. She likes routine, but the ICU is also a very busy place.
“Constant activity. It's very noisy and not restful at all," said Susan, who is noise sensitive. Duncan said it took a month to get equipment beeps turned off in her room.
Finding community from afar
This is not, though, another story about a logjam in the medical complex. It's what's happening outside the system that's important.
"Thousands of miles away from home is a hard place to be in a health crisis. But every single time we have felt discouraged, everyone back home has uplifted us," said Dunlap.
It's been a life-changing experience, and not in a bad way — a striking affirmation of the idea that "community" is not an ideal, it is people who act.
"People have gone in and remodeled Susan's home for her so she can be safe when she returns. Other people have picked up her mail. Another person is walking her dog. Someone is driving my son to work every day because I am not there to do that," said Dunlap.
Twenty days into the saga, Dunlap said she ran out of money. Financial support has come and helped her stay in Texas. People in Bloomington-Normal helped them crowd-source advocacy, find a lower cost apartment rental, and have given advice on navigating the system. Dunlap said every single time a new wrinkle turns up, someone has helped.
And giving runs both ways, they said. Dunlap said they want to help other people who are stuck there like them, noting patients and their families in the ICU lean on each other.
"I sat with a woman whose son was dying of terminal cancer and I was able to sit with her son (so) she could have a few hours of sleep and he would not be alone," said Dunlap.
It can be draining emotionally. Dunlap said they also try to make it light. Someone gave them several cases of water and Gatorade. With the Dallas heat index topping 118 degrees and the vending machine price for water at $4 a bottle, Dunlap said she has been handing the bottles out to others. She also got a donated snow cone machine and permission to make it festive for an afternoon in the ICU.
And it's not just the Bloomington-Normal community, but the kindnesses of strangers that helps make this journey special, she said.
"We have had Uber drivers come and sit with Susan and visit with her after hearing her story. And everyone we meet seems amazed," said Dunlap.
Dunlap said became friends with Susan after they met in a grocery store checkout line when Crowe was a cashier. Dunlap said she didn't know she was this kind of person before agreeing to help.
"Sometimes, you are the person who says or does the right thing at the right time for someone else that makes all the difference," she said.
Crowe said the experience of people sharing with her leads her to ask people to be open to giving, and to urge them to not hold back from connecting.
She continues to recover. Dunlap said it's even possible she'll be home in another month.
If you want to learn more about Susan and Mary, there's a CaringBridge site called Saving Susan Crowe.
Editor's note: 8/15/23 Update
Susan did make it back to this state. Recently her recovery ebbed and she went into hospice. And over the weekend she passed away.
She was made comfortable and had a solid meal for the first time Since late April...Coke slushie, Cake, and Portillo's cheese fries. Mary Dunlap wrote Susan said she was going on the 'greatest adventure there is.'
"May we all be so blessed to know such curiosity, laughter, song, PEACE and pure LOVE during our last moments in this weird impossible world. May we all strive to be the Light in others' lives as Susan was - especially for strangers and outcasts. Her memory IS a blessing," said Dunlap.
