In the beginning, we knew nothing about kidney disease. We were overwhelmed to find that Anne’s kidneys were failing, and that dialysis was all that would keep her alive—that was in mid-1991. We had no idea what caused her kidneys to fail; it was a very confusing time. We watched as Anne struggled time after time with this new thing we called only by its name, “dialysis”.
Simultaneously, it seemed, our youngest son Jessie constantly showed signs of discolored urine—so much so that at one point he had to be hospitalized with a high fever and red urine. Not to worry, we were told; all will clear up with puberty.
Later in life that would not be the case, at all.
After 3½ long and grueling years of in-centre “maintenance” hemodialysis, the call came that we had waited for, for so long. On November 20th, 1995, Anne received the gift of life—yes, the “gift of Life”. We remember it like it was yesterday, truly amazing, thinking all along the flight to London from Sudbury: Who did this? How could this be? What is happening here? Emotional is an understatement: sadness for those in grief, speculations, anticipation, more sadness and, yes, joy.
The transplant went extremely well, and fifteen-plus years later, is still going strong. In her recovery room, Room #8, I remember counting the panes of glass over and over, making sure to remember every detail so as not to forget what had taken place. Never in my wildest dreams did I ever think that on another day in time, I’d look at the those very same details.
Life was good: Anne, no more dialysis, and two healthy, athletic young fellas, Steven and Jessie. We have had a running (sort of) rule in this home: I’d be the minister for health and education, and Anne the minister of finance—that’s why I’m always broke!
When, on one of those duties as minister of education, Jessie’s grade six teacher had asked if we had ever had his hearing tested, she was very serious on this issue. Appointments were made the very next day. The results where shocking, and even after two other testings were completed, the results came back the same: Jessie has 30% bilateral permanent hearing loss. We were floored.
The very next day, he was fitted with a temporary in-school AM hearing system. That day, he beamed; talking with him at school, he whispered to me that they were talking about him down the hall in the principal’s office... what a smile he had. His grade averages climbed and climbed from that day onward.
Now, we had access to a computer in this home, and did much earlier; but it was kind of a mystery to me. Nonetheless I had to find out the reasons for his hearing loss.
Lo and behold, I found Alport’s Syndrome (AS), hereditary nephritis—it was like reading a road map. Eye problems, hearing loss, hereditary, and blood in the urine—did Jessie have AS? Well, we were going to get to the bottom of this.
After a brief conversation with our family doctor, Jessie was immediately referred to Toronto Sick Kids. After several visits to Sick Kids, the choice was made for a biopsy—which, in the end, confirmed that Jessie did have Alport’s, with no known cure. He was 12 years old. He should have been taking ACE inhibitors to slow the process of AS when he was as young as 3 years old and found to have blood in his urine.
Jessie continued to excel in school and sports, playing hockey, baseball, football and soccer—just a normal boy. You would never have known that he had an underlying health problem.
In early 2006, that all changed: a GFR (glomerular filtration rate) test was order from Toronto Sick Kids. The question we asked was just what this test was all about, and why would we have to travel to Toronto to have it done. Soon we had the answers, and opted to have it done right here in Sudbury.
The results were crushing: his kidneys were slowly deteriorating. Immediately we took proper steps to have his information sent from Toronto to the Sudbury dialysis unit. At first we were told that the unit did not accept children under the age of 18 years; we were not deterred, and reminded those involved that indeed we had kept nephrologist-signed orders, from way back when Jessie was 3 years old, and simply insisted that Jessie was indeed one of their patients. Besides, he would be turning 18 within six months.
The first meeting with our nephrologist here in Sudbury was a disaster for Jessie. He was told to stop playing high school football, and that hockey would be out of the question. His creatinine levels were rising, and his blood pressure was another issue. But what can you tell a teenager? He was determined: the school year was approaching, and he was going to play football.
In the meantime, discussions were underway to figure out what form of dialysis would best suit Jessie. PD (peritoneal dialysis) was the emphasis, therefore we had to go to the school and sit with staff and have explained what was going to be going on with Jessie.
But that, too, changed dramatically just as soon as we found out about Nocturnal Home Hemodialysis (NHHD). We discussed this form of dialysis to no end at the kitchen table. We were told here at our dialysis unit that NHHD was not offered here in Sudbury, nor in any other parts of Northern Ontario.
We decided that NHHD would be the very best for Jessie, and the data and study results were undisputable. No matter what, one way or the other, Jessie would be doing NHHD—even if that meant going through Toronto.
He did play high school football, even while having his mom and dad pace back and forth... sorry to say, but I sometimes wished he would have been hurt, just so he would stop playing.
Jessie started in-centre “maintenance” dialysis on December 2nd, 2006. He was determined to learn that machine top to bottom, inside-out; both of us embarked on doing just that. We surrounded and insulated ourselves with the most knowledgeable people possible. We sought out the most up-to-date information available, and not only from Canada. Yes, we did exactly what we set out to do: we took control!
Jessie wanted to go to self-care; he did in short order. Jessie wanted to buttonhole, and he learned that—in no time. We brought media attention to the question of equitable access to “all” forms of dialysis in Northern Ontario, especially home hemodialysis. We approached all NHHD programs in Southern Ontario to get Jessie into their Nocturnal program. This happened, and the meeting was set for September 11th, 2007, at St. Mike’s Hospital, with Dr. Phil McFarlane and his team.
Five minutes before the meeting was to take place, a nurse came walking in waving a telephone number. Jessie had “The Call” to go to London: a kidney was available.
We both knew that someone was in pain that day, and yes, we did shed tears. We had always reminded Jessie that the day would come, and that we would have to concentrate on the moment and that things were now out of our hands.
Ironically Steven’s birthday is on the 11th; Jessie had the transplant in the wee hours of the 12th. He recovered in the very same room that I’d counted the panes of glass in so many years ago; I could still remember Room #8.
By the way, Jessie did finish playing high school hockey, the game he loves; Jessie’s Jersey is #8. He received many scholarships and awards playing the game.
Today, Jessie is 22, and we celebrate his fourth year with his new kidney, which he calls “MY BABY.”
Richard St Amour
Sudbury, Ontario