Sometimes right in the middle of an ordinary life you learn how very unordinary and precious life really is. That’s exactly what happened to Ed Bendall, and it all started out with what he thought was a little cold.
It was the persistent cough that finally got Bendall to see a doctor. It was just a cold, he figured, it’ll go away soon. But it didn’t.
Bendall had been healthy for most of his life until this point. There was literally no reason to suspect that it was anything but a cold, or maybe the reaction to a flu shot he’d just had. He went to his primary physician, Dr. Nick Gillespie, who sent him to a pulmonary specialist in Florence.
On January 6, 2020, Dr. Lynn Ridgeway examined Ed, then excused himself from the room to go and speak to his daughter, April Bendall Woods, who was waiting for him in the hallway. “He told me he suspected that it was something called, Idiopathic Pulmonary Fibrosis (IPF) and told me to Google it,” April recalled. She did so right away, and she didn’t like what she saw.
Dr. Ridgeway referred them to Vanderbilt, and Dr. Joao DeAndrade.
On February 27, Ed underwent more testing, including function test on his lungs, as well as a high resolution CAT-scan, to determine what was wrong. It took what seemed like an eternity for the results to come in and when they did, it was not a shock; it was what they had prayed for Ed not to have – IPF. “It was on April Fools Day, but it wasn’t a joke,” says April.
April did more extensive research to find out where Ed might have contracted this invader into their lives. “It sometimes shows up in people who work in chicken houses, but dad has always been an auto mechanic, so that wasn’t it. Some articles indicated that it might have come from Rheumatoid Arthritis, but Ed had no symptoms of that, either. And as far as treatment, there isn’t one, and no cure, the only thing that would save his life was a lung transplant,” said April stoically.
At first, Ed wouldn’t even talk about a transplant. He and Sandy had difficulty coming to terms with the fact that the only way he could live was if someone who was a good match for him died. But since his lung function test showed that both lungs combined were operating at 70 percent capacity, and it was going downhill, they knew that it was only a matter of time until he lost so much function that he was ineligible for the transplant. It was a lot to grasp. It seemed like a dream, or something that was happening to someone else.
Ed’s lifespan had suddenly gone from a normal one to two and a half years.
About this time, the doctors at Vandy prescribed a new drug called OFEV, which hopefully would help to slow down the progression of the disease. He was also put on oxygen. The drug cost $10,000 per month. Fortunately, Sandy has good insurance through her teachers retirement package.
The lung transplant papers arrived. “About a hundred pages of them,” said April. There was so much to study, to learn, to make sure that Ed would have a fighting chance. There was so much information flying at them that April stepped up to the plate and helped her parents to understand everything, and because she needed to do whatever it took to save her dad’s life.
Vanderbilt requires that a lung transplant patient have two primary caregivers. April became one of them, Sandy was the other. “It was an emotional rollercoaster,” April recalled. “All of us even had to have mental evaluations to prove that we were mentally capable of handling the stress that comes with illnesses like this.”
The nature of this disease is not like cancer, where it can spread from one organ to another. The danger here was that it could fill up his lungs. “He could go to bed fine, wake up in the morning and have a coughing spell and could possibly be gone that night,” she said. “It was something we had to prepare ourselves for.”
At the time of the diagnosis, Ed was 66 years old and still working a couple of days a week. He was in good shape, which was in his favor, as April explained that only those healthy enough to withstand a lung transplant were chosen for a transplant. “The team met every Friday to go over everyone who was eligible. Once he was okayed for that, he went on back to Vandy for more tests, labs, x-rays and a bone density test,” said April.
On Monday, July 13, 2020, Ed’s name was put on the waiting list for a pair of lungs. Once he was accepted into the program and placed on the list, there was little to do but wait.
At this point, his lungs had gone from functioning at 70 percent, down to 28 percent. That was scary.
Some people wait for months for a match. In what seems like a miracle, in Ed’s case it was only four days.
It was April who took the call. “Hey, we got lungs for you! You have four hours to pack and get here to the hospital,” said the caller from the transplant team at Vanderbilt.
They flew into action and were on schedule until they reached the bridge in Decatur. There had been a bad wreck and traffic was halted. They called ahead to let them know what was going on and then sat there nervously waiting for the road to open up. “We sat there for an hour!” said April.
When they were back on the road again, traveling at 90 miles per hour, they made it to the hospital at around 5:00 p.m. “It helped that this pair of lungs had to be flown to Baltimore to be cleaned, then returned to Nashville, so there was enough time,” April explained.
Due to COVID restrictions only one family member can accompany the patient to their room. April insisted that Sandy remain with Ed that night and she would take over for her in the morning. It was a long night.
As she sat in the car in a parking garage, April thought about all of the times she had checked the little donor box when renewing her drivers license. At the time, she never realized how important that small act could be for someone in her dad’s situation. Now it had become one of the most important things she’d ever done. “People need to realize that by checking that box they are saving lives,” she said emphatically.
The month of April is National Donate Life Month (NDLM). It was established by Donate Life American in 2003. Observed in April each year, this is a way of encouraging Americans to register as organ, eye and tissue donors and to honor those that have saved lives through the gift of donation.
Ed Bendall’s lungs were donated through the United Network for Organ Sharing (UNOS), which is a private non-profit organization that manages the nation’s organ transplant system under contract with the federal government. According to their website, UNOS brings together hundreds of transplant and organ procurement professionals and thousands of volunteers. This unique collaboration helps make lifesaving organ transplants possible each day. This system serves as the model for transplant systems around the world. Their mission is “to unite and strengthen the donation and transplant community to save lives.” In addition to other responsibilities, this organization is responsible for managing the national transplant waiting list, matching donors to recipients 24 hours a day, 365 day per year.
It was a representative from UNOS who contacted Vanderbilt, who in turn contacted April with the news that the lungs matching Ed’s requirements were available.
The original plan was to transplant both lungs but during surgery one was determined to be not up to the required criteria, so the doctor doing the surgery made the decision to transplant only one of the donor lungs, leaving one of Ed’s original lungs in place.
During the hours of waiting for the surgery to be completed, April and Sandy did their best to post any news from surgery and reassure their family and friends that all was going well and to answer any questions from their loved ones about Ed’s progress.
The decision to remain in Nashville, per the hospital’s requirements, had been made beforehand. The family would remain there for the next three months so as to be close by should any emergency crop up during Ed’s initial recovery.
They received updates from the surgical unit every hour that day. About 4:30 that afternoon someone on the transplant team called to let April and Sandy know that there were no complications and that Ed was on a ventilator.
At 6:30 a.m. April’s phone rang again, but this time it was her dad’s voice coming over the line. “I’m awake, I’m good!” he said. She still gets emotional when she remembers the sound of his voice and how wonderful it was to hear him saying those words.
After the transplant, Ed stayed on oxygen for several days, and was up walking around as soon as possible. By Wednesday, they were thinking he might be put in a step-down unit but his oxygen level dropped and it was discovered that one of the main arteries leading to the new lung was leaking. “The OFEV medication caused his arteries and veins to become as thin as tissue paper,” April explained. “A clamshell cut across his chest was performed on Monday morning.” The way the staff explained this procedure to April and Sandy was that a muscle around Ed’s heart was wrapped in pig skin and used to repair the leak. This involved another 12 hour surgery.
By Wednesday, Ed was improved enough to move to the step-down room and in a few days, he was able to be transferred to a regular hospital room. April attributes this rapid improvement to the walking Ed did prior to the operations. “He was in good shape to begin with, except for the lung, and he kept walking as much as he could up to the time of surgery, although he slowed down a lot near the end.”
“It was a good thing that the transplant happened when it did,” she said, “Because they measured the function of his original lung after a few weeks and it was only functioning at five percent. He would have been ineligible for the transplant had that happened before surgery.”
“The new lung was operating at 90 percent, which was exactly what we wanted to hear,” April affirmed.
April’s brother, Lucas, his wife, Lori, and daughter, Georgia, helped out by keeping everything on the home front running as normally as possible. They cleaned, mowed and did all of the things Ed and Sandy needed seen to during their three-month absence.
Their extended relatives and neighbors pitched in, as well, helping to tend to Betsy, the family dog, and to do any other chores that needed attending to.
April’s husband, Randy Woods, and son Andrew McGregor, came up every weekend to be with them in Nashville, otherwise, it was a long three months but it gave them peace of mind to know that they were so close in case something went wrong. “Vanderbilt is rated as one of the highest lung transplant hospitals in the nation, so we were comfortable knowing we were in good hands,” said April.
Ed was placed on anti-rejection medications which he will have to take for the rest of his life to combat any reaction to the new lung.
Sandy and Ed can’t say enough about how their daughter made this transition in their lives easier by putting her own life aside and taking on the responsibility of Ed’s care during his hospital stay and later after he was able to come back home. “She was our rock and Godsend,” Sandy wrote in a post on her Facebook page about April. “There is no way we could have survived Vanderbilt and the lung transplant without her. She had to leave her family behind for three months to take care of us, and she even caught several mistakes that the pharmacy made that could have been fatal to Ed.”
When they got back home, April continued to make daily trips to her parent’s home just outside Moulton to check Ed’s blood pressure, oxygen and temperature, and to make sure he was taking his medications correctly. This will be a daily routine for the rest of Ed’s life.
At the present time Ed takes 10-12 pills each morning and the same amount again at night. This will continue for the rest of his life.
Ed says that he really doesn’t have a bucket list but that he’s never seen the Grand Canyon, or done any sky diving, although he’s not sure he even wants to do those things. For now he intends to do some hiking around the Bankhead Forest to nearby waterfalls and later to go the four miles to the Big Tree and back.
He enjoys fishing, but there are some limits to how he fishes now, for instance, he is required to wear gloves when handling fish or bait, and he can’t bait his own hook in case he might stick himself with a contaminated prong.
“He can’t go in over his head in the ocean, and can never sit in hot tub,” said April.
Sandy says that they have always been close and that the successful transplant has given them time together that they might not have had. “It’s a miracle,” she said. “But he’s still a pain in the butt,” she laughed.
The family returns to Vanderbilt this week for a regular checkup. They wish to encourage people to donate by checking the box on their driver’s license that will designate them as a donor. “You never know when it will be your turn to be on the receiving end of that donation,” said April.
“Although this is a happy time for us, we recognize this is a sad time for another family and we will forever be grateful,” said April. “This selfless act is never taken for granted.”
According to the UNOS website, due to the generous gift of life saving organs, tissue and eyes, the total of transplants from January – December 2020 as of 02/07/2021 is 39,035. Ed Bendall is one of that number. Yet, even with a 38% increase in deceased donation over the last five years, the need for organ donors is immense.
The people who donate these life-saving gifts are the real heroes of this story.
Contact information about organ, tissue and eye donation:
United Network for Organ Sharing (800) 292-9548 and (804) 782-4800
National Donate Life Registry – Donate Life America. 701 East Byrd Street, 16th Floor, Richmond, VA 23219 | 804-377-3580
Transplant News Sharing // “Lung Transplants” – Google News from Source www.moultonadvertiser.com