Gail Rhodes got the call that a suitable donor had been found to give her a lung transplant andwas asked how long it would take for her to get to Prince George Airport.
Considering she can almost see the runway from her house she told the caller it wouldn’t be long and was there within 20 minutes to board a plane for Edmonton. Seven and half hours later, she was on the operating table to begin a five-hour surgery.
Rhodes received a double lung transplant on Oct. 30 and the 69-year-old has since made a remarkable recovery. Freed from the oxygen tanks that kept her alive when her disease-ravaged lungs could no longer do the job, she has her life back again and can do the things most of us take for granted, like having a shower, getting dressed, walking, bending over or giving her dog a belly rub.
Tears well up in the eyes of Gail’s husband Robert when he thinks back to the time he saw her lying in her hospital bed unconscious with a breathing tube still inserted days after surgery. He couldn’t help but worry she would never come out of it.
“The day I walked around the corner and that air tube was out, I thought, we got ‘er made now,” said Robert. “It’s been the best thing that ever happened, she’s herself again. She’s getting out again and every day she’s getting better and better. We’re very fortunate that she did so well. Even the doctors say that. It was a lot easier than I expected.”
All it took was one laugh to convince their daughter Georgina that her mom had a new lease on life. She hadn’t heard that sound in about a year. Even talking had become a struggle for Gail. Her thickened lungs were so damaged from the effects of idiopathic pulmonary fibrosis (IPF) that her life expectancy was ticking down to a matter of months.
“After the surgery when I heard her laugh for the first time I knew things were changing,” Georgina said. “I had to come back to Prince George to get her medicines and when I went back to Edmonton I saw a huge difference. Her laugh was incredible because she couldn’t laugh before, it was too hard for her. It was tough. It was a hard year.”
Gail first noticed trouble breathing about 40 years ago on a camping trip when she went for a walk and was short of breath. She was a light cigarette smoker and didn’t think it was much of a concern until she was in Vancouver at her granddaughter’s ringette tournament, where her breathing got so bad she ended up in the hospital and was told she had bronchitis. That continued to flare up in successive winters and her doctor in Prince George, Steven Chang, referred her to a respirologist Sharla-Rae Olsen, who diagnosed her with IPF in September 2015.
The cause of IPF is not known but pulmonary fibrosis is a scarring of the lung tissue, which causes it to thicken and stiffen. The disease limits the ability of the lungs to expand to take in air and the thickened tissue makes the transfer of oxygen into the bloodstream less efficient. Medication and therapy can help improve lung function but the damage is irreversible and the condition becomes progressively worse with time. IPF patients usually don’t survive longer than 10 years.
At first Gail declined when asked if she wanted to be placed on the transplant list, refusing to admit to herself she was that sick, but that changed once she realized her condition had taken away her independence. She was attached to an oxygen tank 24 hours a day and when her consumption climbed to five litres daily, she told her doctor to put her on that list. For three years, she was tied to a breathing machine that was pumping nine litres of oxygen into lungs each day just before her operation.
“Being breathless was hard,” Gail said. “I couldn’t walk very far and stairs were a killer, four steps and I’d have to rest. Sometimes I could hardly talk I was so breathless. My husband and family had to take up the slack. I felt like a burden, I never went out of the house anymore, I was slowly giving up.”
Seeing Gail deteriorate before their eyes was heart-wrenching. The pandemic only worsened their fears for her future, knowing if she did get the virus her chance of surviving would be slim. But then that call came. Gail had her suitcase already packed, as she was told to do, but it still came as a shock and it was hard for her and Robert not to feel panicky.
“That was a stroke of luck that we are close to the airport,” said Robert. “They phoned Gail and asked if she was still willing to take a set of lungs and she said ‘yes’ and they said they said we’ll phone the airvac people and get back to you. It wasn’t even 10 minutes and they phoned back and the (plane) was sitting on the tarmac, waiting to go to Terrace, but there was a storm and they couldn’t land there and the guy said we’ll go to Edmonton. She was in Edmonton in an hour and a half.”
Gail could have had her surgery in Vancouver but chose the Alberta capital because she has relatives there. She was discharged from hospital 40 days after surgery and remained in the city for another two months for post-op rehabilitation, living in rented accommodation where she her family could spend time together. 2nd Chance Trail Ride, a charitable group started in Alberta by five double-lung transplant recipients, donated money to the family to help pay the $2,000-per-month cost of living in a furnished suite in the three months they were in Edmonton.
Despite pandemic restrictions the immediate family was allowed to visit see her in hospital while she recovered in ICU. She did develop a heart complication during her recovery, which scared everybody, and son Jody remembers how hard it was seeing his mom in that state.
“I look at her now and she’s just stronger, more vibrant, but at first, I think it happened so quick, it was good, but you’re nervous,” he said. “Once mom was in the hospital we knew she was in good hands. They do miraculous things with transplants these days and in the end it all came together. The first time I thought something good was happening was when she was out of the hospital in Edmonton. She was sitting on the sofa having a nap, breathing in very deeply and her cheeks and hands were pink.”
Three weeks after her operation, Gail’s blow test, which indicates lung capacity, was already up to 91 per cent. It had dropped to about 20 per cent before the transplant. She saw photos taken of her diseased lungs after they had been removed and their brownish leather-like state was radically different from the healthy pink tissue of a normal set of lungs.
“I was just amazed that they were like that,” she said. “You’re told, when you have IPF your lungs are like a dry sponge with scarring all over it.”
Gail and Robert first went to Edmonton in March 2019 to participate in five-day-per-week rehab sessions with four others seeking lung transplants and at the end of the meetings they were each told they were being placed on the top-priority list. One of the patients got his transplant three days later, one died before a donor could be found, one had the operation but died two months after it and one just celebrated his one-year anniversary, having received his lungs in January 2020.
Dr. Rhea Varughese, one of six respirologists working on the University of Alberta Hospital lung transplant team, didn’t get to see Gail until after her operation because of the pandemic, which limited face-to-face meetings, but worked closely with her since her surgery. She said Gail’s recovery and return to a normal life put her in the top percentile of lung transplant recipients in her age group.
“She’s definitely thriving,” said Varughese. “Ideally we want our patients to have an excellent outcome like Gail’s, where she has more time to build her life up again and do the things she values. But some of our patients don’t get that opportunity. Unfortunately we still have on our wait list 20 per cent mortality, so that means they were listed for transplant but they passed away before we could find a donor for them.
“The challenge is finding the right organ for the right person at the right time. Ideally we want to transplant them before they’re too sick, which would make their recovery harder or increase the risk of complications afterwards.”
Unlike the transplant of a kidney, liver, heart or pancreas, a lung donor has to be of similar height to the recipient. The donor and recipient also must have the same blood type. It took nearly two years to find an appropriate fit for Gail. A majority of organ donors are male and fewer than one per cent of people die in a way that makes their organs suitable for transplant.
Lungs take in the surrounding air and are directly exposed to the environment outside the body and that poses additional challenges for transplant patients taking anti-rejection drugs, which dampen the immune system. They’re more at risk of infections and more prone to cancer. The lengthy operation also puts the heart under a great of deal of stress, which can lead to complications. People with lung disease tend to be inactive and lose muscle mass, which can diminish outcomes or make them unsuitable candidates for transplants. Gail spent six weeks in hospital, while some younger patients are out within two weeks.
“For the first six weeks it was slow for Gail to get going,” said Varughese. “Considering her initial challenges right off the bat, we were expecting her to progress a little bit slower than she did. But after that six-week mark it was like a switch turned on and everything started to click in place. She’s done remarkably well.”
Gail takes between 25 and 30 pills every day and will be on anti-rejection drugs for the rest of her life. Managing the side effects of her medication requires continual monitoring by transplant specialists in Edmonton, who will continue to check up on as long as she lives. The medication has made her an insulin-dependent diabetic, which she hopes is only temporary, and she’s also more at risk for high blood pressure, kidney disease and other conditions, which would require more medications to treat. She loaned her oxygen equipment to a friend that needed it but she’s not quite to the point where she’s ready to sell it just yet.
Robert and Gail celebrated their 50th anniversary last year in February, just before the pandemic hit, and when they returned from Edmonton last month, their friends and family were there waiting for them standing along their driveway with a line of balloons to welcome them back. They both love camping and fishing and are glad they didn’t sell their travel trailer which they hope to use often this summer.
In Canada, between 350 and 400 lung transplants are performed annually in hospitals in Toronto, Montreal, Vancouver and Edmonton. The world’s first lung transplant was performed in 1983 in Toronto. At the time of Gail’s surgery in late October, 54 patients in 2020 had received a donor lung or lungs at University of Alberta Hospital. The number would have been higher if not for the pandemic and the closed U.S-Canada border which limited the donor supply.
Despite that, B.C. set a record in 2020 with 55 lung transplants.
The median life expectancy after transplant is between eight and 10 years. There are now more than 1.5 million people who have filled out forms to join the BC Organ Donor Registry, up from 922,000 in 2014. One organ donor can save as many as eight lives and you don’t have to be young. A 92-year-old was the Canada’s oldest organ donor.
The recipient surgery does not begin until the retrieval surgeon sees the organ and can determine whether it’s of suitable quality for a transplant. Three surgeons in Edmonton perform lung transplants. The respirology team is there for post-operative care and to determine whether patients are suitable candidates for a transplant.
Lungs do not last long outside of the body and transplant teams try to get them into the recipient within four or five hours after they’ve been removed. Since 2011, doctors have been using a new technique called ex-vivo lung perfusion which has successfully kept lungs alive for longer periods. The donor lungs are hooked up to a ventilator and blood vessels going to the lungs are connected to fluid/antibiotic sources which increase the quality of the organ. Gail’s lungs did not require that.
She doesn’t know yet whose lungs she received and whether the identity is ever revealed to her remains up to the donor’s family. She and her family plan to write letters to the transplant team, which will be forwarded to the surviving relatives and it will be up to them to decide if they will contact her.
“The biggest hero in my story is my donor, without them there wouldn’t be a story,” said Gail. “I do not know who my hero is. I may never know. I am extremely grateful to my donor and their family for this miracle they gave me. I didn’t sign my donor card until after I got IPF. I thought about it but just didn’t get around to doing anything about it.”
Robert had a donor sticker on his driver’s licence at one time but like Gail, he didn’t think about it until she got really sick.
“I never ever thought we would need it, but I highly recommend this to anybody I know,” said Robert. “Be a donor, because it’s not only your lungs, it could be any part of your body that somebody could use and there would be nothing prouder to a family to know that you gave something that saved somebody else’s life, which is basically what they’ve done for Gail. The doctor said, they never have enough donors.”
Of equal importance to filling out a donor registry form is the need for people to discuss organ donation with family members to lessen the chance of uncertainty if something tragic happens which could unnecessarily delay patients awaiting life-saving donor organs.
“When somebody becomes a donor it’s usually the most devastating time for a family,” said Varughese. “Whether it’s a stroke or brain bleed or trauma, however they’ve lost their loved one, it was typically unexpected and excruciatingly painful. It’s around those times we’re coming and approaching families about organ donation. I think it’s easier on families to make the decision on whether to proceed with donation if they know that that’s the wishes of their loved one that is passing away and it takes some of the burden off those family members at the time.
“Most families chose to donate to make the best of an awful situation. Their grief is still there but there may be a bit of relief that something good has come out of the something so awful.”
For more information on the organ donor program go to transplant.bc.ca.