InFocus Magazine

Our hearts beat. We inhale and our lungs expand, sending life-giving oxygen to our red blood cells. Our kidneys do their jobs as sophisticated trash collectors, processing about 190-litres of blood per day to sift waste products and extra water from our systems. Our bodily organs work in unison, all day long, day after day after day. And most of us never even think about them. We take our body organs for granted. They are just there.

Forty-six-year-old Bobby Bates is different. The Comox Valley father of two genuinely appreciates his one fully functioning kidney. For him, kidneys are a big deal. He is reminded on a daily basis to be ever thankful that the gift of a kidney saved his life—a gift from his sister, Penny Bates.

“I was diagnosed as a Type One diabetic when I was 20,” says Bobby. “I was told that at some point, my kidney function would deteriorate. I didn’t expect to be in my early 40s when that happened. But there I was, living with declining health, suffering from severe exhaustion, and unable to work or upgrade my skills at school because my kidney function had plummeted to less than 15 per cent. My doctor advised me that, without a transplant, I would soon need to go on dialysis. I was devastated.”

Bobby called his mother, Linda Dobinson, and invited her out for coffee, hoping to “break it to her gently” that his health was rapidly failing.

“Bobby looked utterly heartsick when he told me,” says Linda. “But he is such an unselfish man, his first thoughts were of his two daughters; how he wanted to be around when they graduated from high school, went off to college, and got married. That was his biggest concern. I gave him a hug and cried when I told him I would donate one of my kidneys if was able to. And then I called Penny.”

“You know what it is like when you get ‘that call’ from your mother, saying that she needs to talk,” says Penny. “I was mentally preparing myself for her to come over and tell me that Bobby had something terminal. But it was just his kidneys! It sounds silly now but truthfully, I felt a sense of relief because my first thought was, ‘Hey! I can

do something about this! I can give him one of mine!’ A few days later we had a family birthday party for Bobby, and I told him that I wanted to be his kidney donor.”

So began the long processes of undergoing countless medical tests, travelling to Victoria and Vancouver, and hoping beyond hope that a transplant would be possible. Linda, other family members, and several friends who had also come forward to be tested were all ruled out as donors rather quickly.

Just because they couldn’t be Bobby’s organ donors, that didn’t mean that his friends couldn’t offer their support. Bobby was shocked when the people in his hometown of Cumberland put together a fundraiser at the Waverley Hotel for ‘one of their own’. “He kept saying, ‘Why are they doing this for me?’” says Linda. “I guess he just didn’t realize how people feel about him. The money raised helped cover his expenses while living in Vancouver to recover from surgery.”

Thankfully, Penny was a perfect match. Although the two siblings were born 11 months apart, their genetic make-up is so similar it is almost as if they are identical twins. It was like a match made in heaven.

“They say that everything happens for a reason,” says Penny. “Coincidently, I had taken a leave of absence from work, so I was ready and able to help Bobby. My only fear was that the transplant wouldn’t be successful, and then I would no longer be able to help him. I could hardly wait for the surgery day.”

That day came on November 19, 2014. Bobby, his wife Marla, daughters Olivia and Teryn (then ages 15 and 17 respectively), and Linda went along for moral support.

There was a six-hour wait from the time that Penny first went into the operating theatre before I was taken in,” says Bobby. “I was overwhelmed with emotions, worrying about my sister. I tried not to think about myself. My girls hid their feelings when they were with me, but I know they broke down in private. This is a tough time for families and having a good support system is vital.”

Linda agrees. “There is a feeling of overwhelming helplessness, seeing both of your kids go in for surgery. Their guardian angels and yours are on duty. You can’t afford to have doubts. My heart was simultaneously breaking and bursting with pride,” she says.

“You just do what you have to do,” says Marla Bates. “You tell yourself that the road to recovery after the transplant has got to be better than what we had been going through. Bobby had lost so much weight; he had little strength, and slept all of the time. Now, there was hope that he was going to be a part of our lives again. We just focused on that day—not next week or next month. It was day-by-day, step-by-step. Otherwise, it would have been overwhelming.”

Mercifully, Penny’s fears of organ rejection were unfounded. Both she and Bobby recovered relatively quickly and they are back to leading active and normal lives. He is ever grateful for this most precious gift.

“I don’t think the impact of what we had done hit me for about a year,” Penny says. “But it really hit home when I went to Teryn’s Grade 12 graduation. I looked over at Bobby, celebrating this milestone with his family, and I thought ‘You did good!’ But I still don’t think of myself as a hero.”

While someone can ‘gift’ another person a kidney, for obvious reasons a living donor can’t give away their pancreas, heart or lungs. Being on the Provincial waiting list for organ harvesting from a deceased donor presents different challenges.

Tony Duke understands what Bobby went through because six months ago he was also desperately hoping for a guardian angel to help him. The 61-year-old Union Bay resident was severely debilitated from a lung disease associated with his rheumatoid arthritis. Doctors had advised him that he needed a double lung transplant. For him to live, someone else would have to die. And the statistics were not encouraging.

According to BC Transplant, less than one per cent of British Columbians die in a way that enables them to become organ donors. Despite the fact that there were 422 organ transplants performed in the province in 2015, 21 British Columbians died while waiting for transplants. Of last year’s organ donations, 95 were from deceased donors—from which multiple organs can be harvested—and 113 were from living donors. As of January 1, 2016, there were still 562 British Columbia residents on the transplant waiting list. Tony was one of them.

According to his wife, Beth Campbell Duke, Tony had become depressed and reclusive. Fully dependent on supplemental oxygen, connected to an eight-metre long oxygen hose 24/7, he had lost the stamina for and interest in his antique appraisal business. He essentially became housebound, avoiding contact with family and friends.

“At first, the thought of a transplant was upsetting for both of us,” says Beth, speaking on Tony’s behalf because he is in recovery from a double lung transplant and still has bad days. “We spoke with other people who have had transplants and to our transplant team. They reminded us that people are dying all the time. It is the awareness of the cycle of life. We were in a position where we didn’t have the privilege of ignoring it. The reality of this hit Tony particularly hard because his brother, Peter, also had lung disease and had died a few years ago. Peter had not been a candidate for a transplant. Tony questioned, ‘Why am I on the list for a lung transplant and my brother had to die?’ So, there is a bit of survivor’s guilt there.

“When you are on the waiting list for a transplant, time and hope are all you’ve got,” adds Beth. “The nursing coordinator kept saying ‘it will happen,’ and there was reassurance from our transplant team. But Tony was struggling so hard to breathe. Shortness of breath produces panic and anxiety, and he was so tired. We were told that 20 per cent of our body’s energy is used for the unconscious act of breathing. In Tony’s case, it was 60 per cent, and it was hard work for him. There was a lot of fear. He needed to ask for help for even the most basic daily tasks.”

Vancouver Island residents on the waiting list for organ transplants are required to travel to Vancouver General Hospital for medical appointments every three months. Tony had an appointment for a routine check-up on May 4 of this year, and Beth had packed for two days travel to the mainland. On the morning of May 3, they were late getting started on their trip. They were on their way out the door when the phone rang. Thinking it was a telemarketer, Beth told Tony to ignore it. Thankfully, he didn’t.“It was the call to say that the transplant was a go,” Beth says. “We had only two changes of clothes in the car, but we had to get on the road to ensure that we would make the next ferry.”

Beth explains despite the excitement of getting ‘the call’ there is no guarantee of getting the transplant. The organ donor is in the hospital on ‘organ support’ (not ‘life support’), so there is a window of time to call potential recipients. Organs are usually harvested in the evening because the operating theatres are booked during the day. Sometimes the surgical team will prepare more than one patient, just in case. If at any point they find a problem with any of the donor organs or potential recipients, they cancel the transplants.

Tony was admitted to hospital later that afternoon. They did the necessary pre-operative tests and determined that it was a good match biologically and the lungs were a good physical fit. He went into surgery at 3:00 am on May 4. Beth’s eyes tear up with a mixture of joy and sadness when she recalls Tony’s reaction to the news. “May the fourth be with me!” he said with a weak smile as they wheeled him into the OR.

Tony would spend the next three months recovering in Vancouver. There were some complications, and there will always be challenges, but he is now free of his dependence on supplemental oxygen and making huge strides toward living a normal life. He knows that his organ donor was an individual who died of a drug overdose. He and Beth think about this person often.

“He is especially on our minds because Tony suffers from chronic pain due to his arthritis, and he knows that the person that died was struggling and needed help… and they didn’t get it,” Beth says. “We have a lot of compassion for the organ donor, and their extended family. The transplant team asks that you wait a year before you write an anonymous letter to the family to thank them. It will be a difficult letter to write.”

While Bobby Bates and his family chose to live through their organ transplant experience more privately, the Dukes felt that they needed to share their story.

“This became apparent to us early on in our journey, when we began sharing on social media and doing internet research that connected us with several online support forums in various countries,” says Beth. “It is not commonplace for people to see details about organ donations and transplants. But we feel that this is a subject that needs to be discussed. The three-month waiting period for us was relatively short, yet it seemed like forever because we had no control. When you are on the waiting list you are just sitting there, waiting for the phone to ring. Your lives are on hold.

“Receiving the gift of new lungs has changed Tony’s future,” Beth says. “The alternative was that he didn’t have long to live. He has a renewed passion for his work. I have been coping by doing a lot of writing, and I am putting together a workbook as a resource for transplant caregivers. We have also started a website, to educate people about organ donation.” (www.transplantrogues.com)

“Being an organ donor should be a no-brainer,” concludes Bobby’s mom, Linda. “At the worst moment of your life, you have the ability to save up to eight lives. If you could help someone else, why wouldn’t you?”

A decal on your driver’s licence or Care Card is no longer enough to ensure your wishes to be an organ donor are carried out. It only takes two minutes to register your decision on organ donation online. And age doesn’t matter—the oldest recorded organ donor was 93. Register at www.transplant.bc.ca.