His blood pressure was so high when he went to donate blood in 2009 they wouldn’t let him donate and instead encouraged him to see his family physician.
“They freaked me out a little bit because they kept saying ‘you feeling OK? You should be in the hospital.’ And I’m going what are you talking about? I feel fine.”
A year later a specialist diagnosed Clint McNeill with IgA nephropathy or Berger disease an autoimmune disease that occurs when clumps of antibodies are deposited in the kidneys causing inflammation and kidney damage.
“The doctor said I probably had it since birth,” Clint, 66, explained.
He was 50 years old when he was diagnosed and his kidney function was at 42 per cent when it should have been at 70 or even 80 per cent.
But he felt fine.
“I was told that one in four people who have this disease sees a drop in kidney function,” McNeill said.
“But chances are it may not and it would hold where it is. It will never get better but with medication I was taking it might hold.”
Because of the disease his blood pressure stayed chronically high which can lead to a heart attack and Sue, Clint’s wife, said that was the concern for her.
“If he hadn’t been diagnosed we might have gone on for years not knowing until cardiac arrest took him – that’s always the fear – that he would have a heart attack well before the kidney disease would take him,” Sue said.
Throughout the years Clint’s kidney function did diminish and he was referred to the kidney clinic.
“That was good because I would get my blood tests every three months and when I didn’t hear anything from my family doctor – I’m thinking to myself well, if I don’t hear back then they aren’t alarmed about what’s going on. But then when I hit below 30 per cent and the kidney clinic took over I was quite relieved to become part of that because they were sending me my test results and if I have any questions I would just call the nurse and then once a year I would get a phone call with the doctor, the nurse, dietician and a pharmacist to review everything.”
Now that he has reached a more critical stage Clint’s blood tests are every two months and a review of his condition takes place every nine months.
“The lowest my kidney function got was 22 per cent,” Clint said. “It went up to 24 per cent so it’s hanging in there. If it gets down to 20 percent or below I go on the transplant list.”
But Clint feels fine.
Full kidney failure is usually at 15 per cent, Sue added.
“You can still function at that rate,” Clint said. “I have been told that transplant patients waiting for a kidney have been as low as two or four per cent range.”
Last year was the first year the McNeill’s joined in the annual Kidney Walk, an event that raises awareness as well as funds for the cause.
“And that led to meeting some interesting people who have gone through it and we heard about the coffee club meeting they have once a week from Paul Ravelle,” Clint said.
Ravelle is president, Northern BC chapter, volunteer regional director and Kidney Walk coordinator, Northern BC, BC & Yukon branch Kidney Foundation of Canada.
“We have met eight or 10 people from that,” Clint said. “Hearing their stories – people who have lost a spouse, are on dialysis or had a kidney transplant, so I get good information from their stories and that helps me quite a bit – being able to talk to them about some of it. I’m glad we’re involved with the walk. We’re doing pretty good in raising money for the cause. It’s family and friends who have pitched in and helped quite a bit and we appreciate everybody’s commitment to that.”
The Kidney Walk in Prince George takes place on Sunday, June 1 at 11 a.m. at Lheidli T’enneh Memorial Park. The walk is hosted by the Northern BC Chapter of the Kidney Foundation of Canada.
“We feel really lucky he got diagnosed by accident because a lot of people don’t know until it’s too late,” Sue said.
A lot of people experience the out-of-control blood pressure that Clint did but that symptom of kidney disease is not usually recognized until that person has a heart attack, she added.
“Clint was typical of a male at 50 years old – he didn’t go to the doctor,” Sue said.
“He was not one who frequented a physician because he had no health concerns at all.”
“I never checked my blood pressure on my own ever,” Clint said. “There was no reason to – I felt fine.”
At this stage Sue has been peeking into the process of a kidney transplant.
“Some of it’s good, some of it is a little scary,” Sue said with a grimace.
Through gathering information Sue learned one important thing.
“The kidney transplant might not be the miracle – it could be but it may not be the fix-all,” Sue said.
There are so many different circumstances and so many issues people deal with on the kidney disease path, she added.
The McNeills have always been cautiously optimistic throughout Clint’s journey.
Some of the symptoms Clint experiences are muscle cramps in his hands and legs and feeling cold.
“But I walk a lot and I drink lots of water,” Clint said.
“I call it the limbo disease because there’s no definitive end,” Sue said.
“So you kind of live day by day and do what you can. Our family calls him the Marathon Man because he walks so much.”
“I walk a lot because I want to get in as much as I can because there might come a day where I am laying in the bed – hopefully I won’t get that far but maybe I’ll be healthy enough to withstand whatever is coming down the road,” Clint said.
Along with the usual kidney disease symptoms like weight loss, weakness, vomiting, shortness of breath, leg cramps, itching, chest pain, easy bruising and swelling in ankles and legs, Sue said there is one sign that many people overlook.
“Many people don’t know that frothy pee is a sign of kidney disease,” Sue said. “That’s the one that I remember the most.”
Another challenge for Sue is that Clint doesn’t look sick so family and friends forget how far along Clint’s kidney disease has progressed.
“I think because I don’t look sick it’s easy for people to not have an understanding of how serious this disease can be,” Clint said.
Dietary restrictions help manage kidney disease and Clint is cautious about how much sodium, protein and potassium he consumes.
“I used to eat a banana every day,” Clint said. “So I had to give up bananas and yeah, I missed it for a while.”
At the kidney clinic they advised him on what to avoid.
“They told me to be careful but you can’t stop everything, so moderation is part of it,” Clint said.
“So that’s what I try to do as best I can.”
So now to cut down on protein he eats a steak the size of a deck of cards or a half a chicken breast.
“So we share a lot of our protein now,” Sue nodded.
“What he’s supposed to eat and what I eat is the opposite. We always say I live to eat – I love food - and he eats to live.”
Clint eats white rice while Sue should be eating brown rice, she added. All vegetables are good for Sue but some are not recommended for Clint like beets and beet greens.
“There’s a lot of things – I shouldn’t eat raw carrots but I can eat cooked carrots,” Clint said. “And potatoes – I have to parboil them and boil them – that’s the safest way to eat them.”
“What we all lean towards is green leafy vegetables and that’s what we have to avoid now,” Sue added.
It’s all about avoiding processed foods for Clint and Sue so everything is homemade to guarantee there is no hidden ingredients that could wreak havoc on Clint’s kidneys.
Things have changed over the years as Clint’s kidney function declined.
“I’ve noticed that he gets tired now,” Sue said. “Where he never did before.”
Clint walks about 10 miles a day with the community-owned neighbourhood dog, Cooper, who is a faithful companion.
For now, Clint and Sue will keep doing what they’re doing and are participating in the Kidney Walk as the Howling Wolf team.
This event is raising awareness and funds in support of those living with kidney disease, like Clint, who still feels fine and their families.
Kidney disease is often referred to as the silent killer as symptoms don’t become evident until it seriously inhibits kidney function.
Kidney disease affects one in 10 Canadians and has no cure.
To donate to the Howling Wolf team visit https://kidney.akaraisin.com/ui/BCYWALKS25/t/howlingwolf and for more information visit www.kidneywalk.ca
