‘FEELS LIKE A MIRACLE’
Man is first in the state to have COVID-ravaged lungs replaced
FRED RAHMANIAN WAS WITH HIS CHILDREN >> triplets — when they celebrated their 18th birthday in February. Soon he will be there to watch them graduate from high school and a few months later help them as they head off to college.
There were moments at the end of last year when being there for these milestones, and more to come, appeared very unlikely for the 54-year-old Berks County resident.
Fred was the recipient of the first lung transplant performed on a COVID-19 patient in Pennsylvania. The double-lung transplant was performed at Penn Medicine in Philadelphia on New Year’s Eve into New Year’s Day.
“I was put on the donor list I think 72 hours before New Year’s Eve,” he said. “Luckily within 72 hours they were able to find a donor that was a perfect match.”
The transplant was Fred’s only chance at surviving after COVID destroyed his lungs.
“I saw the pictures of the lungs that they took out,” he said. “Good lungs are supposed to be smooth and pink. These looked rough and very pimply. It looked really, really bad.”
He spent months in the hospital, the majority in the intensive care unit.
He was so sick that a ventilator could not support him, so he was placed on an extracorporeal membrane oxygenation (ECMO) machine to stabilize him and allow his body more time to fight off the infection.
Before getting COVID-19, Fred had no health issues with his lungs or breathing.
“By all accounts I should have made it. I shouldn’t have had any problems,” he said. “I had good lungs. I didn’t have any other issues. I shouldn’t have ended up in the hospital.”
Getting sick
Fred’s ordeal started in October when one of his children became sick with COVID. The virus then spread in their household to Fred, his wife, Pam, and one of their other children. While the children fared well with the virus, Fred and his wife did not.
Fred looks at his ordeal as a reminder to people to get vaccinated if they are able to. His family’s experience with the virus shows that it is impossible to know who will be fine with COVID and who will have a severe, possibly life-threatening,
experience.
At one point, Fred took his wife to the emergency room as he was concerned about her breathing. They spent a few hours in the emergency room and when his wife was stabilized, they returned home.
The couple isolated in their bedroom for a few days. When Fred’s oxygen level in his blood dropped, he called his doctor who said he should call an ambulance and go to the hospital. His oxygen level dropped a few more times, and he was admitted to Reading Hospital.
“I really knew something was wrong when he told me to call the ambulance,” Pam said. “When he first went into the hospital, I thought he would only be there for about a week.”
Fred felt OK into the second week while he was in the hospital, but then started to feel worse.
“I remember one day I just started coughing a lot and my breathing just didn’t get better,” he said. “Then after that I don’t remember much until two days before my transplant when they woke me up.”
Fred and Pam mostly texted while he was in the hospital due to the modified visitor policy. Pam got regular updates from her husband’s doctor.
“After the first week when I started finding out that he was really taking some big nose dives in his oxygen saturation and it was taking a while to come back up, I finally asked the doctor, ‘How long can he keep this up? I don’t think his body can withstand this,’ “Pam said.
According to Pam, the doctor agreed with her. Then about an hour into her workday, on a Monday, she received a call from the hospital.
“They said, ‘Fred’s not going to make it. You need to get here right away,’ “Pam said.
‘We’ll take him’
That afternoon, after being able to see her husband in the hospital, Pam had to break the news to her children.
The family discussed possible decisions that Pam could have to make, including giving doctors the goahead to intubate her husband.
“We talked about it,” she said. “I said at least maybe we can give him a chance.”
Not long after, Pam received a call that her husband’s oxygen level nosedived again and he needed to be intubated. With Fred now unconscious, the decision-making fell solely onto Pam’s shoulders.
In early November, Fred was placed in the ICU, where he was put on the ECMO machine. He continued to show no improvement.
According to the couple, the hospital said there was not much more they could do for him there, so the family began searching for a hospital that would be willing to take him as a patient.
It was Penn Medicine that said yes after other hospitals said no.
“Penn, not knowing with
all the uncertainties, they said, ‘We’ll take him,’ “Fred said. “They gave me many weeks on ECMO to see if I would improve instead of just saying no. I’m grateful to them for taking the chance.”
Running out of options
At Penn Medicine, Pam gave the hospital the OK to give Fred a tracheotomy that would be easier on his body because he was still intubated.
“I decided I was going to try to give him the best chance I could at life and then it was up to him and his body to take that chance,” Pam said.
After 21 days and continued testing, Fred was considered COVID-free, meaning Pam was allowed to visit him for two hours each day.
Her time with him was spent mostly on video calls with family, including their children who could see and talk to their father though he was not awake. The children would tell him about their day, how much he was loved and how they wanted him to fight.
Despite all the setbacks and the weight of having to make decisions for her husband, Pam said she felt an inner calm. Pam credits her faith, friendship and family with getting her through the ordeal.
“That’s what kept me going except for when Penn Medicine called me after six weeks of him being on ECMO saying your husband’s not getting better,” she said. “They said he’s not going to get better. They said there was nothing more they could do for him.”
While ECMO was helping Fred’s lungs and heart, the longer he was on the machine the more likely something else would happen such as a blood clot or a stroke or other organs failing.
“That was the first time I lost it,” Pam said. “It was hard having things happen. He would rebound, that glimmer of hope and then having that glimmer of hope taken away by something else. He would stabilize and then you’d have the glimmer of hope again and then something would happen.”
In addition to being on ECMO, Fred was given remdesivir and two rounds of convalescent plasma. Neither treatment worked.
“That last time, when they said nothing could be done, I thought well this is it,” Pam said. “They had talked to me six weeks prior about a possible lung transplant, but they admitted that they had never done that before (with a COVID patient). They didn’t even know if it was possible.”
‘Your husband made it’
Dr.
Christian Bermudez, director of thoracic transplantation at Penn Medicine, said the first challenge was deciding if a transplant
was an option for a COVID patient because only a few such procedures had been done at that point in the country.
And Fred being in the ICU on ECMO for close to two months added another layer of complexity.
At the same time, this was the only option for Fred, who was otherwise healthy.
“As he had not recovered within seven weeks or so we thought that the likelihood of him recovering was low and the mortality of dying without a transplant was very high,” Bermudez said. “We had lost before him a few patients that were not able or didn’t have time enough to consider for a transplant. We knew the mortality with this infection, especially requiring mechanical ventilation and the ECMO machine, was much higher.”
Since Fred had no other health issues and was not getting worse on ECMO, the team decided to take the chance and he was put on the transplant list.
About 72 hours later, he received the news that a donor was found. Bermudez said the surgery took about seven hours.
“It was a long procedure, and it needs to be perfect,” he said.
Pam said her husband went into surgery around 11 p.m. and she got the call from Bermudez around 5:15 a.m. that the surgery was complete.
“He said, ‘Happy New Year, your husband made it. He has a new lease on life. It’s truly a new year for him,’ “Pam said of the call. “It’s just amazing.”
Long road home
Following the surgery, Fred spent about 20 days in the ICU. Bermudez said that is considered a rapid recovery from a transplant.
Fred’s goal was to get out of the hospital, then the rehabilitation hospital and finally home as quickly as possible because he had not been home with his family since October. In his room was a large frame of photos of his family.
“Every morning when I woke up, I’d see them,” he said. “They were my motivation the whole time.”
Recovery from not only a transplant surgery but so many weeks in the ICU was not easy.
Fred initially could not move his legs or walk and was unable to speak as he was weaned off the tracheotomy and the hole slowly closed. He lost about 50 pounds as well as his muscle strength. It was quite a while before he could eat or drink as well.
Even when he was out of the rehabilitation hospital, he could not go home right away because he needed to stay close to the hospital in case he had a setback. The family, including one large dog, stayed in a hotel room halfway between home and the hospital until he was cleared to go home in March.
“A lot of things came together for this to work,” Fred said. “All along, throughout this whole thing, my wife gets all the credit. People say you got a miracle. Yes, I did get a miracle.
This feels like a miracle that I’m here. But the bigger thing is I actually got a miracle before that which is my wife. Without her, I don’t know if I would have made it.”
Recovery has meant some lifestyle changes for him. As a transplant patient, he is highly immunosuppressed. He and his family will need to continue to wear masks when outside their home, despite being fully vaccinated, to do the best they can to prevent him from getting COVID-19 again or any illness.
Fred hopes the public keeps people like him in mind when it comes to updated masking guidance as COVID-19 is still circulating in the community and masks not only protect the wearer, but those around them.
The success of the transplant and Fred’s recovery has also been rewarding for the Penn Medicine team.
“It’s really stimulating to see how everybody’s effort and work led to his story of success,” Bermudez said. “We’re so excited
to see Fred going back to his family, his three kids, and being able to see them graduating and enjoy normal life at home with his family as much as possible.”
‘Thank the family’
Receiving this second lease on life would not have been possible without the donor and their family. Fred does not know who the donor was at this time.
“I am indebted to him or her and their family,” he said. “I wish we could thank the family.”
Pam said that while she prayed for a match for her husband, she also prayed for the possible donor and their family knowing that her good news would mean tragic news for another family.
“Without them, none of this would have been possible,” she said.
The couple has always been registered as organ donors and this experience makes the decision even more important to them.
According to Richard Hasz, vice president of
clinical services for Gift of Life, there are more than 5,000 people in eastern Pennsylvania, Delaware and southern New Jersey on the waiting list for an organ transplant. The simple fact is there are not enough organs available for the number of patients on the list.
The decision is not an easy one for loved ones to make, Hasz said, but the majority of families who decide to donate are happy that something good could come from the tragedy of losing someone they care about.
“It’s one of the last humanitarian acts you can do and such a great way to leave a legacy of life for somebody else,” Hasz said. “We hope that for every successful transplant people take away that for that transplant to be successful, it took the courage and the commitment of a family to say yes to donation. That they thank and honor that family and that they consider being an organ donor for themselves.”