Smith given another chance with new liver
Posted By Tara Seel, Central Plains Herald-Leader
Posted 17 days ago
Tara Seel/Central Plains Herald-Leader...Ken Smith and his partner Joy Bray snuggle up with their pooch, Echo, in their Portage la Prairie home. Smith had only 10 per cent of his liver left when he was diagnosed with cirrhosis. The prognosis for his illness was that Smith would need a liver transplant — fast. Following the operation, Smith is now able to lead a happy, healthy life.
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Ken Smith has a new lease on life, and according to him, it is nothing short of a miracle.
Throughout the common person's day, their liver is the least of their worries, but for Smith and his partner Joy Bray, the last five years of their lives have been all about the liver and Smith's need for a new one.
"It started out that I was really tired all the time," said Smith, a Portage la Prairie resident. But the couple could not get a diagnosis for what was ailing him, and it was frustrating.
"For three years, we had to sit at home," recalled Bray. "We'd start out somewhere, and then, all of a sudden, he'd get real sick, and we'd have to come home."
Their lives were on hold, and doctors couldn't give them an answer. Smith estimates they made 26 trips into Winnipeg in the span of a year for a myriad of tests and biopsies to try to figure out what was going on. Then, the problem became visible.
"I kept saying to Joy, 'You know, I think you're shrinking my shirts,' because they were getting shorter and shorter," recounted Smith with a chuckle. "Well, my belly was getting bigger and bigger because I wasn't getting rid of the water I should have."
The pressure from the extra 18 litres of water Smith was carrying caused him to develop a hernia. When he went to Brandon to see a surgeon about the hernia, Smith was finally diagnosed, and the news was not good. He had cirrhosis of the liver.
"I only had about 10 per cent of my liver left by the time they diagnosed it," related Smith. "They call it the silent killer. It can go, go, and it can get bad, and then, all of a sudden, you begin to get the symptoms."
Smith's liver was being attacked by his immune system, but the battle against liver disease was only one of the fights the couple had to engage in.
"Whenever you tell anybody you have liver problems, right away you're an alcoholic," said Bray, "and you cannot talk people out of that."
"You can say pretty much whatever you want," confirmed Smith, "but they still walk away believing you're a drinker."
With the diagnosis, the couple embarked on a journey that was arduous and life-altering. Observing the two Portagers in their home, completing each other's sentences when they talk, it becomes clear this battle was not fought by Smith alone.
The devastating news was that Smith needed a liver transplant, and he needed it fast, but the couple kept optimistic.
"In some ways, it was a happy occasion (to get the diagnosis) because they found out what was wrong with me. I found out how bad off I was, and yes, I did need a transplant, but at least the process was in motion. I sat around for a long time not knowing anything, not knowing what was the matter with me. It was pretty bad," Smith said quietly.
The couple was given two options: go to London, Ont., for the transplant, or go to Edmonton. They chose Edmonton because Bray's aunt lived there, so she would have some support while she was being strong for her partner. Once they got to Edmonton, Smith realized he would not be going home to wait for an organ, as most people do. He had to be admitted to the hospital immediately, which, in a way, was a good thing because he was near the top of the transplant list.
"Once you're in the hospital, he was on the top half of the transplant list, and if he had released himself from the hospital, he would have been on about page five at the bottom. You're higher up if you're in the hospital," informed Bray. However, keeping Smith in the hospital proved to be a challenge.
"We were having a grandchild just being born," said Smith. "He was two weeks old. We missed kids' birthday parties while we were out there. I kept wanting to come home, and Joy kept saying no, 'cause the doctors were telling her how sick I was, but they weren't telling me."
The first step was operating on Smith's hernia, which was completed successfully. Then he was ready to await the arrival of an organ that would be a suitable match for him. Then, according to Smith, a miracle happened.
"That was about the 20th of August '06 that (the doctor) put me in the hospital and started this procedure. The operation was on the 12th (of September). They came to me on the 8th and said, 'You're on the list, on the top of the list from 1-10,' and I thought, 'Great! I'm on the list.'"
A couple of days later, Bray had just returned to her room in the outpatient residence when a man walked into Smith's hospital room.
"I'd never seen this guy before," recalled Smith, but the stranger — the transplant co-ordinator — turned out to be a messenger of very good news. Smith had his liver.
"My nerves were shot to begin with, and this made them even worse," said Smith. "I went out to use the phone to call Joy, and I couldn't even use the phone. I had to get the nurse to dial the number for me."
At 3 p.m. the next day, Smith was headed to the operating room to receive his new liver, and not a moment too soon — Smith's kidneys had started to shut down due to his liver failure.
"I'm not sure he knew how bad he was," said Bray. "They didn't point blank say he was going to die, but they kind of warn you."
"I mean I knew I was sick," Smith recalled, "but I guess all I thought about is is it going to be today? Will I get one today?"
The wait was extremely stressful.
"We were a wreck," admitted Bray. "They warn you you can get your call and you're all set, and then the family decides, no, they're not giving up that organ, or something happens to the organ and it's not suitable to transplant. You're on pins and needles right up until …"
"Right up until they put that mask on and say goodnight," finished Smith.
Once they took him to the operating room, his partner had to sit for 12 hours in the waiting area.
"You're down in the area where they're going to bring him back wondering if he is coming back," Bray stated softly. "It was terrible."
"We said our goodbyes," admitted Smith. "It is a life-altering experience is what it is because you're dead without it, and you could be dead going into that room. You have to get in touch with God because if you didn't have faith about that time at least, you're in a lot of trouble."
Positivity was the name of the game for Smith.
"I was trying to stay positive. I'm going to get his liver. It's going to make me better. I'm going to be able to do things with my grandchildren and with Joy, too, that we couldn't do for at least three years .… I just tried to stay positive. This is the thing that's going to fix me. I don't think I ever thought about me not making it through it."
Smith did make it through the operation, and after weeks of outpatient therapy, daily bloodwork and lessons on his many medications, he was able to return to Portage, but only because Bray made a promise.
"She had to sign a piece of paper saying she would be my support person for three months," Smith explained, and Bray willingly signed it so the couple could get home and focus on the business of healing and rebuilding their lives. However, Smith was not out of the woods yet. Back in Portage, he began to reject his new liver and ended up in the Portage District General Hospital, where they were able to get him stabilized and on medication to help fight the rejection.
Today, Smith is doing great. He is trying to lose some of the weight put on by the anti-rejection medication, but he is getting his strength back.
"I'm just about back to normal," he said quite proudly. "When you have your liver go on you, you lose all your muscles .… I feel strong again. I can pick up my grandkids and put them over my head. Not that I try to do that," he said, quickly shooting a glance over at Bray.
Once Smith began to heal and his life started to get back to normal, meaning the hours weren't consumed with being sick and fighting the disease, he realized what a gift he had been given. The couple has had contact with the donor's family. The donor — a young boy who died in an accident — was a well-loved, much-missed son and friend.
"You're happy in one way," said Bray, "but you know there's someone else who is very unhappy."
While communication with the donor family is done anonymously through the hospital where the donation took place, and they have no idea what he looked like, and only have his mother's description of the boy's vitality and vigour, the Smiths know that boy gave them a miracle, and Smith is taking full advantage of it.
"Joy and I and our kids — that's all that's important." And the couple also knows how important it is for people to sign their donor cards.
"If your loved one is on their death bed, it's hard to say, 'Yeah, take their organ,' but if they signed something, then you know that's their wishes," said Bray.
For now, the couple is enjoying their family and their hobbies, and they are also making sure they spend more time together. Their home is a happy one, with Echo the dog sharing cuddle-time between both Smith and Bray. Miracles don't happen everyday, but for these two Portagers, they will never doubt that miracles do, in fact, happen. Smith has the liver to prove it.
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