Golden Lake – Fifty years ago, a young teenage boy from Golden Lake became responsible for administering life-saving dialysis treatment to his ailing mother, and now at age 64, he too is preparing to start dialysis as he awaits a kidney transplant.
Melvin Berndt was just 14 when he was trained to administer the home dialysis treatments for his mother, Alma, at their Golden Lake-area farm. He had just started Grade 9 at Opeongo High School and shortly after starting his first semester, his mother’s kidney failure worsened to the point where she had to be put on dialysis.
The third youngest of six children in the family, he spent the next six weeks in Ottawa learning how to administer the treatments at their home that had been set up with dialysis equipment.
“It’s 50 years ago since I put my mom on dialysis and now I need a kidney,” he said. “My mom had three kidney transplants back in the 1970s.”
Mrs. Berndt’s condition was hereditary in the Heideman family and he lost several aunts and uncles to the disease. Mr. Berndt noted four of the six children in his family have issues with their kidneys, and his eldest sister had a transplant three years ago. In addition, his third eldest sister and youngest sister are also battling the disease.
Mr. Berndt said he knew he would be afflicted with the disease some day and several years ago he first started seeing the symptom of increasing tiredness.
“I was always tired. I knew some day I’d probably have it.”
Because of his family history with the disease, he was referred to a specialist in Ottawa, but he didn’t find that person to be very helpful.
About four years ago, he was referred to Dr. Geena Joseph, a renal specialist at Renfrew Victoria Hospital, who prescribed a new medication.
“That’s when they came out with this new drug (tolvaptan), and she put me on it. I felt better after that, but it doesn’t stop the kidney disease. It just slows it down.
“Before that, I was really tired and now I feel good,” he added. “It gave me a couple of extra years.”
Before taking the new medication, he could fall asleep anytime. Now, after being on it for about six weeks, he no longer needs an afternoon nap.
He is fortunate to have the pills covered by OHIP, noting they cost $100 a day.
Mr. Berndt said Dr. Joseph has been terrific and she was delighted to learn he was sharing his story to raise awareness for potential kidney donors.
“Dr. Joseph did some research on it and the Heideman family has the heaviest strain of it too,” he said.
Youngest To Take Course
Back in 1973 when he took the course to administer the dialysis to his mom, he was the youngest person to ever have taken the training.
“It was a 12-week course in Ottawa and I learned it all in six weeks,” he explained. “Then they sent me home to put mom on at home.
The doctor in Ottawa sent a letter to school officials asking them to provide homework for Mr. Berndt while he was away doing his training.
“You couldn’t do it online back then. I’d do my math and stuff and then when I’d come home on the weekend, I think I gave it to my sisters to take in.”
Despite the circumstances, he was able to keep his grades up, noting the only class he failed was woodwork because he wasn’t there to do the practical assignments.
“After Christmas, I’d start putting her on at night and take her off at 6 o’clock in the morning so I wouldn’t miss as much school the,” he recalled. “And that went okay.”
Mr. Berndt liked the two men who trained him. They took him out for dinner the final week and at first he was upset they were sending him back home because they had a mutual appreciation for each other.
“The Friday afternoon they took me out for lunch and they said something to me that hit me like a brick wall,” he recalled. “They said the only thing that you have to remember when you put your mom on at home is that her life is in your hands.
“I was just a kid and the first month-and-a-half at home was pretty nerve-wracking,” he admitted. “I couldn’t sleep when she was on it. It really bothered me for a long time.”
He slept on a couch in his mother’s room and an alarm would sound on the dialysis machine if a hose became kinked or blocked by a blood clot. His care for his mother was essentially a 365-day a year job.
“I was the only one that would do it,” he said.
He remembered there being a large water tank in the room that likely held 150 gallons which went through the machine to keep the blood warm as it circulated. He had to clean the machine every second use and he said it was frightening to see what ended up being caught in the membranes that filtered the blood.
“The stuff that comes out of your blood, you wouldn’t believe it. I don’t know what your body does with it, but the first time I tore that machine apart, I couldn’t believe it.”
Lost First Kidney After Daughter’s Birth
Mr. Berndt said his mother lost her first kidney following the birth of her youngest child, a daughter, in 1967.
“They took Laura Lee at seven moths because her kidneys were failing. The night before she was born, they told my dad and my Aunt Mabel they didn’t know if either one of them would make it.
“His sister was born at three pounds and four ounces and both she and Mrs. Berndt survived.
“Then mom went to Ottawa for six weeks and they took out her first kidney.”
Mr. Berndt said despite the circumstances, he feels his mother always did her best to remain positive and be a good wife and mother.
“It’s amazing what she went through,” he stated. “We were told when she went for her third transplant that she really shouldn’t do it because she had a bad heart and could die on the table.
“But mom said she didn’t want to live on a machine anymore,” he added. “Going to Ottawa twice a week was killing her.”
He said after the third transplant, she again did not come home for six months.
His mother had her first transplant about 1974 and she was able to return home for about a year. Unfortunately, the anti-rejection drugs were not as good then as they are now, so her body rejected the kidney and a second transplant was required. When she had the second transplant, she had to remain in Ottawa for six months. And between the transplants, she had to travel back and forth to Ottawa for dialysis twice a week. They had taken the machine out of their home after the first transplant.
“And dad (Walter) was looking after us and the oldest girls were doing the cooking and the washing.”
His mother passed away from a massive heart attack at her home in February 1989.
Blood Type An Easy Match
Mr. Berndt already has a tube in his stomach that was installed December 14 through which fluid will be pumped for peritoneal dialysis.
“I’m getting really close to being on it.”
He said the general criteria to be considered for dialysis is when your creatinine level measures 500. His most recent blood tests have shown counts of 509 and 511. There are two types of dialysis and the one he will be on is considered the best because it is done daily and in the evening.
A beef farmer who also does custom haying, he said it has not slowed him down. He recently retired after 13 years as a delivery person for the Pembroke News.
His blood type is an easy match so that is beneficial in trying to find a donor.
“I just want to make people aware,” he stated. “I really want a kidney because I know how it worked for mom.”
He said some people are on a waiting list for as many as five years, but they generally have a rarer blood type.
“I don’t want to wait five years.”
Mr. Berndt has had great support from his partner, Patti Miller, who he has been with since 2010.
While he was rarely hospitalized in most of his 64 years, he suffered a stroke last December 24 that forced his hospitalization on Christmas Day.
Two weeks ago, he had a bad cough and no energy and Ms. Miller took him to the emergency department at Barry’s Bay. Blood tests revealed he had a blood infection, so he was admitted for five days. He said the medication prescribed caused him to get the diarrhea, so he ended up being quarantined.
A councillor in North Algona Wilberforce Township, the responsibility is a good distraction and helps him think of things other than his health issues.
“It’s good for me,” he said, adding he enjoys the role.
“I’m easy to get along with and I’m a friendly person with everybody.”