Fighting for a chance to survive

 

It started off as just an average day at work in April 2009 for Robert Howe. He was at work, he felt fairly healthy, fairly fit and completely surefooted. He was securing a load on his trailer, something he had done many times in his career as a truck driver. That day, though, he lost his balance, fell off his load and was knocked unconscious. When he awoke, life, as he knew it had changed forever. 

At first he was placed on compensation. He went for various tests due to the accident and after a while it became apparent something was wrong. Howe was more fatigued than usual; he had numbness in his feet and other symptoms that couldn’t be explained.

“During the last 40 years I have been a truck driver and doing the work and labour work that went with it. It was becoming more and more difficult to do my job,” said Howe. 

“Due to this, I lost my truck and other jobs. After that I couldn’t keep up. I was very frustrated and scared as I didn’t know what was happening to me.”

One of the tests Howe went for was an MRI. After completing the test he was advised that he should see a kidney specialist because something had been found around, or on, his kidneys. 

By this point it was August of 2009. The specialist didn’t seem too concerned because Howe’s blood work was coming back normal and he didn’t, nor does he now, have diabetes. 

He was sent for an ultrasound. The ultrasound confirmed that Howe has Polycystic Kidney Disease (PKD), which features multiple cysts, two or more, on both kidneys. He went back to see the kidney specialist who didn’t appear too concerned and who explained that he has PKD.  

“Right now I am very fortunate that I am alive, had I not gone in when I did I may not be alive. The only reason why I went in (to see a doctor) is because I had been a truck driver for over 40 years and I fell off my load, and I was always sure footed. When I fell off my load that’s when they found out that I had this disease,” said Howe.

PKD is a common disease that affects one in 500 people, and approximately 12.5 million people are affected worldwide. The disease equally affects men, women and children, and does not skip a generation. Those with PKD have a 50 per cent chance of passing the disease on to each of their children. 

PKD can also affect other organs such as the pancreas but the liver is the one primarily affected. 

After it was determined that he had PKD, Howe was then sent to a resident doctor who told him he had 32 per cent total function in both kidneys.

“This doctor more or less said not to worry, I could live till I was 95 and die of something not related,” said Howe. 

“Unfortunately he told me what I wanted to hear, not what I needed to hear.”

Because no one seemed overly concerned, Howe wasn’t worried until within two and a half years he was told he had dropped down to 25 per cent kidney function. In March of 2013, Howe had dropped to 20 per cent. 

 “When I first got diagnosed I took it nonchalantly because they didn’t seem to think it was that serious, or that’s the way I felt,” said Howe.

“(If) I had the proper guidance at the time I would have ate the proper foods and it may have slowed down the loss of my usage of my kidneys, may have, not for sure.”

After dropping to 20 per cent kidney function Howe’s specialist put him in touch with the renal clinic in downtown Calgary. The team at the clinic spoke to him about his disease, and gave him a binder to take home. 

It was while reading that binder of information that Howe and his wife Patricia discovered he should have been involved with the renal clinic when he was first diagnosed at 32 per cent. Howe is now looking for a kidney before dialysis goes from an option to necessity. 

“With Polycystic Kidney Disease there is no treatment or cure. Approximately 60 per cent of those suffering from the (autosomal) dominant form of PKD will rely on either dialysis or transplantation,” said Jeff Robertson, Chief Executive Officer for the PKD Foundation of Canada. 

“For us to get a kidney this is where the problem starts to happen is anyone that donates a kidney first a of all they don’t get the right information by contacting certain places, one in particular is believe it or not, the Kidney Foundation,” said Howe.

Howe’s youngest daughter, who is 37, has the same disease; she offered her kidney to Robert before her own diagnosis. When she began the process of figuring out how to donate that’s when it was discovered she too has PKD. 

The Kidney Foundation told her they would take her kidney but that it may not go to her dad which was right in a way but not fully accurate. 

The way it was explained to Howe was that if you were to offer your kidney for a specific person and you are not a match, there is a pairing system option. You may not be a match for the particular person you want to donate to, but you may be for someone in Ontario and his or her donor may be a match for the person here. 

“Organ donation across the board is a devastating statistic when you look at registered donors on a national level. More often now you’re seeing people go about this approach where they’re trying to draw attention to their personal story in the hopes that someone will step up and be tested, and that’s where he’s at right now,” said Robertson. 

Because his diagnosis came so late, dialysis is in the very near future for Howe. While it is a blessing that option is available, Robertson said it is not a quality of life by any means. 

Dialysis is time consuming, disrupts the day-to-day living and is draining both emotionally and physically. It would also mean regular trips into Calgary for Howe because there is nowhere in Strathmore equipped to provide dialysis. 

Robertson said a lot of people will first try to find a donor and will only resort to dialysis when there are no other options.

Howe is trying to spread the word about organ donation to draw attention to the lack of understanding about donations while hoping to increase organ donation rates.

“In all honesty yes I am looking for a kidney, and I am praying that I can get a kidney but I am also praying that there will be a lot more people who can get this information out and help people instead of throwing it away,” said Howe.

“With getting a kidney I will end up going back to right around 50 per cent usage if not more…I’ll be like a new man. What I am concerned about, what makes me emotional, is our daughter (being) female…she can end up with other problems.”

Howe wishes the right information had been available when he was first diagnosed, and he warns people to get tested. Even if your blood work comes back fine, get an ultrasound done to be sure. Some of the common PKD symptoms include urinary problems, dehydration, kidney infections, heart problems, high blood pressure and stroke. 

“As the PKD Foundation of Canada one of our biggest pushes as an organization is to help educate both the general public, the PKD patients and the medical community on what they can do to prolong the quality of their life, which will give their kidneys the longest life span before dialysis or transplantation are presented as options,” said Robertson.

Howe believes with proper information he could have 

better stabilized his kidneys. 

As of Aug. 14 he was down to 18 per cent kidney function. 

So far he has had no luck finding a donor and until he is on dialysis, which is not far away, he will not be placed on a transplant list and it is up to him to find a new kidney. Howe feels he is not being considered properly for a transplant, and suspects it may have something to do with his age.

“Because I’m 65 it seems that I’ve already lived my life so they’re not too concerned. It feels that if I was young (they would try harder) and I am not taking it away from young people because young people need it just as much and they have a whole life ahead of them too,” said Howe.

“They are not really pursuing the kidney for me, I have to find the kidney.” 

“They don’t realize that he could have 20 or 30 years of good, productive life,” said his wife Patricia. 

When he is under 15 per cent usage of the kidneys he will go on dialysis. Howe feels if he doesn’t go on dialysis for a couple of years, and if the wait is seven or eight years, he could be 75 by the time a kidney becomes available. He thinks at that point he may be passed over for someone younger. 

According to Robertson in Alberta the time and process to donate a kidney will depend on the individual. He suggests going and getting tested. Reach out to a local hospital for the nephrology clinic or transplant clinic. Generally having a specific person in mind helps expedite the process, however, you can also be an altruistic donor; just put your body on the system and be on the list to find a match. 

To find out more about Polycystic Kidney Disease go to www.endpkd.ca. 

Howe’s blood type is O+.