Pat Howell and kidney disease

“The first phone call was around midnight,” says Pat Howell, 84, remembering the first of three calls about having a kidney available for transplant. She recalled going through the process the first time.

Howell says, in her case, the hospital had one hour to inform her a kidney was available, then she had an hour to respond and then two hours to get to the hospital.

When Howell went through the emergency entrance, she found the lobby empty. “It was a downer. I thought everyone would be waiting for me,” she says. As it was, she had to ring a bell for attention.

Once she checked in, Howell was weighed and prepared for surgery. “I didn’t know until 11:00 that I wouldn’t get that kidney,” Howell says. That was the first phone call.

The tenth leading cause of death in Canada is kidney disease and 14 per cent of the 24, 114 people on dialysis are on the waiting list for a kidney, according to the Kidney Foundation of Canada. According to 2016 data, one in ten Canadians have a form of kidney disease with an average of 15 people being told their kidneys have failed daily, according to the Foundation.

Howell has a form of kidney disease called polycystic kidney disease (PKD).

Shannon Fogarasi, Ontario Director of Programs and Public Policy for the Kidney Foundation, defines PKD as “a genetic disorder characterized by … cysts in the kidney.”

The number of PKD patients rose from 191 in 2007 to 213 in 2016, according to Canadian Organ Replacement Register (CORR). The latest statistics from the CORR is from 2007-2016. Quebec statistics are left out because there was not enough information reported between 2011 and 2016.

According to CORR, on Dec. 31, 2016, there were 1,847 transplant patients in Canada; 39.2 per cent of those diagnosed with kidney disease were female and 60.8 per cent were male.

In Canada, 2,159 people were on a waiting list for a kidney in 2007; 41 of those people died. In 2016, there were 2,856 on the waiting list and 74 people died, according to CORR.

The number of those who have a functioning transplant rose from 10, 875 in 2007 to 15, 661 in 2016, according to CORR. That’s a difference of 4,786 people.

In 2016, 51 per cent of transplants came from living donors, according to the Kidney Foundation of Canada and 37 per cent of donors were not related to or married to the recipient. Out of the patients eligible to donate who died in 2016, roughly two-thirds were not donors.

The Howell family has a history with polycystic kidney disease. Howell’s mother and brother had it and it was passed to Howell’s children.

Pat Howell was diagnosed in her late 20’s, around 1960. Her mother had already been diagnosed.  Howell was with her at a doctor’s appointment when the doctor suggested she be tested because PKD can be passed on.  “It was scary. Mother didn’t seem to be sick,” Howell says.

Heather Jackman-McCallum, 56, Unit Coordinator at the Lakeridge Health Whitby Nephrology Clinic says bloodwork is often used to make a diagnosis. Nephrology is the medical care and treatment of kidneys. A kidney doctor is called a Nephrologist. Howell began consulting a nephrologist regularly around the age of 55.

“I started to see a doctor. For the first 10 years or so… I had to go to Toronto. There were none in Oshawa at the time,” says Howell.

Later on, Howell learned the disease had been passed on again.

“I have 3 sons and they’ve all had transplants and are all doing well.”

One of Howell’s grandchildren is also being watched for kidney disease.

“She was upset,” Jeff says, describing his mother’s reaction to his diagnosis. “She felt responsible for it.”

Howell’s hopes rose when she received a second call from the hospital about a potential transplant. Unfortunately, the second kidney was also unusable, which meant she would have to remain on dialysis.

She had to go on dialysis because she had reached end-stage kidney disease.

End-stage kidney disease is when the patient comes to the point where dialysis or a transplant is needed so they can live. Reported diagnosis of end-stage kidney disease went from 2,364 in 2007 to 3,065 in 2016 in Ontario, according to CORR.

She began dialysis in 2000. “I was told I would have to go on dialysis when I was 66 and that was like the bottom dropped out of the floor.”

Before her transplant, Howell was on dialysis, a treatment that cleans blood for those whose kidneys can’t do it properly. Howell waited four years for that transplant.

There are two kinds of dialysis: peritoneal [papa-ten-eel] dialysis (PD) and hemodialysis.

With PD, a tube covered in tiny holes is put into the peritoneum, which is essentially a bag that holds the organs in the abdomen, a fluid bag filled with dialysis solution, and something to drain the fluid into. This is called an exchange. This process is done about four times during the day for about half an hour, with 4-6 hours between exchanges, according to Heather Jackman-McCallum.

PD can be done two ways: manually or automatically.

Manually, the patient or nurse performs the exchange. Automatically, the patient is attached to a machine overnight, if they are doing dialysis at home. The machine will perform the exchanges in short cycles.

Both Howell and her son Jeff used PD.

“I think I’m fortunate to have what I have – to have polycystic kidney disease,” Howell says, “because I can have dialysis.”

Dialysis solution is a mixture of salt, sugar and various minerals in water. If the patient has diabetes, they may need to adjust their insulin levels based on the amount of sugar needed in their solution. There is also a solution made for diabetic patients. Those on PD generally have two litres of fluid inside them during the day.

The fluid goes through the wall of the peritoneum and is left in for a period of time which varies depending on the patient. The toxins in the patient’s blood are drawn to the fluid through the membrane and sticks to the fluid, Forgarasi says, then the fluid is drained out the other end of the tube.

“If you think of yourself, in one way, like a tea bag,” says Fogarasi, “a teabag’s a good example of having all those little holes and when you dip in the water all of the impurities come out, right? In one way you can think of your abdomen working in the same function.”

The Lakeridge Health Whitby Nephrology Clinic has a multi-care kidney clinic which tries to “delay the progression of kidney disease” prior to the use of dialysis.

In some cases, if a patient anticipates going on peritoneal dialysis, Jackman-McCallum says they may get “a buried PD catheter,” which is the tube in the abdomen. The catheter is surgically placed “under the skin” so when the patient goes on dialysis the tube will be in position and just needs to be “unburied” by the doctor.

If the dialysis treatment is more imminent, the patient would receive an “exposed PD catheter,” which would already have an end outside the skin.

The strength of the dialysis solution, time needed for an exchange, method and time of exchange depend on the patient’s personal case.

Hemodialysis (HD) is where the blood is taken out through tubes and cleaned in a machine before being put back into the patient. This process takes about 4 hours at a time and is more likely to be done in a clinic, although with proper training HD and PD can be done at home.

“They (hospital staff) won’t let you go on dialysis [at home] until they know for sure, you know what you’re doing,” Howell says.

Dialysis can come with complications. “While they’re (PKD patients) on dialysis, part of the problem is, their cysts can be so large they can rupture,” Jackman-McCallum says. The position of the cyst and volume of fluid can cause discomfort.

A patient on PD can “get a cloudy bag, that means they probably have an infection called peritonitis which requires antibiotics,” Jackman-McCallum says.

Jeff says when his mom went on dialysis it was “on almost an emergency basis,” while he began dialysis early on in his diagnosis.

After a four-year wait, Howell received her transplant. It was 2004.

“I was just ecstatic when I got back in the room and it was all over,” she says. Because of the transplant, Howell says she’ll be on anti-rejection medicine for the rest of her life.

Howell’s second of three sons, Jeff Howell, 59, received a transplant in June 2009. He says in his case, his “biological kidney [was] left in.”

Each case is different, so not every recipient may keep their biological kidney.

He says it took about 6 months before he stopped going to the hospital on a regular basis after his transplant.

“It’s very important for those with kidney disease to see others who’re doing well,” Howell says

Jeff says seeing how his mother was doing helped him after he was diagnosed.

“She’s certainty a very giving person,” Jeff says, describing his mother. “She was very active at the Oshawa clinic for a number of years. Both as an advocate and for kidney patients and working in the dialysis unit at the hospital as a volunteer.”

Howell volunteered at the hospital in the dialysis unit for 12 years. She says, “I always say that I was selfish when I volunteered.” She feels she got as much out of it as the people she helped.

Jeff says, “I believe it gave her a purpose as well.”

It took three phone calls for Howell to get her kidney transplant. The Kidney Foundation is working to improve quality of life for people with kidney disease, like Pat Howell.