The Waldvogel Family at St. Vital Park

*Below is part one and two of the Waldvogel’s story. They appeared in the Summer and Fall issue of the Kidney Care Connection.

 

Meet the Waldvogels: Volunteer Family of the Year
By Melanie Ferris
Part one in a series of two

"We’re proud to be working with the Kidney Foundation,” says Winnipeg resident Blair Waldvogel. “Support for patients and families living with kidney disease is so important. So issupport for research into kidney disease.”

The Kidney Foundation of Canada depends on passionate volunteers to help us spread awareness about the importance of kidney health. This year, the Manitoba Branch is pleased to welcome the Waldvogel family from Winnipegas our “Volunteer Family of the Year.”

Blair, Irene, Jack and Leo are the Waldvogels. Blair has been on dialysis for almost five years. He was diagnosed at age 10 with an illness called Henoch-Schonlein purpura. At age 14, hehad a biopsy done that confirmed he had developed IgA Nephropathy as a result of his illness. He managed his disease with medication and diet for 30 years. But at age 44, his kidney function declined below five percent, which meant that it was time to start life-saving dialysis.

Impact on the family
“Kidney disease affects so many aspects of family life,” explains Irene, Blair’s wife of 13 years. “Giving up space in your home for dialysis equipment and supplies, the changes in diet and meal planning, the inability to travel spontaneously or to wherever you wish, having to schedule holidays and vacations, even weekend trips, around dialysis sessions, the decline in household income, and so much more.”

“When someone in a family has a chronic illness, it ends up becoming your family’s identity in a way,” says Irene. “There’s the Waldvogel family… did you know that Blair is on the kidney transplant list? We look forward to the day when that label is gone and we are just the Waldvogel family.”

“I’m proud of how well Blair deals with his situation because he doesn’t complain and doesn’t let himself get down,” Irene reflects. “He makes it easier on the whole family to deal with his situation, our situation, and I really admire that.”

“My hope is to get a transplant and get back to life like it was before dialysis,” explains Blair. “I enjoyed working and really miss that part of my life. I want my family to get their lives back—my wife and sons have been living with this just like I have. Leo, our 8-year-old, really doesn’t remember much from the time when I didn’t do dialysis.

Kidney disease and work

As a Certified Management Accountant with a Master’s degree in Business Administration, Blair had a great career working for an international steel corporation. He started out as the Controller and eventually was named as President of the North American Metal Recycling Division. After he started dialysis, Blair continued working full-time for about one year.

“It was difficult to manage my work schedule,” Blair says. “There’s not a lot of flexibility with treatment schedules plus I feel run down following treatments… after a lot of discussion with my wife, I went on medical leave.”

Treatment at home
“I’m dialyzing at home four times per week. It takes about six hours for each treatment,” explains Blair. “On dialysis days, I’m unable to do much else. I can’t make appointments, can’t meet someone for lunch, can’t even run to the store for 10 minutes, or answer the door if the bell rings.”

Nutrition and the expenses
“There are so many foods that Blair can’t eat,” states Irene. “This limits the variety of dinners that can be made. We both find it very difficult deciding what to cook each day.”

“There are many extra expenses along the way,” Irene says. “Some are minor, like parking on clinic days, but some are major, like dialysis fees when travelling. There’s also prescription costs, the rise of home electricity and water bills, and more. We’ve been relatively lucky, but for some, the financial burden could be very stressful.”

Blair has the following advice for other Manitobans who have been diagnosed with kidney disease, “Listen to your medical team and follow their advice and instructions. For most of my life, the disease was invisible. Anything you can do to keep the disease from progressing will be worth the effort.”

IIrene shares, “We hope telling our story will encourage people to support research into kidney disease, to be understanding of families living with chronic illness, and to sign their donor cards!” She encourages Manitobans to visit the online registry at www.signupforlife.ca.

Blair is waiting for a kidney transplant. He has been on the waiting list for a kidney for five years, since October 2010. You can read more about his wait in part two of the Waldvogel’s story in the Fall issue of The Kidney Care Connection.

The Wait for a Kidney: A Story from our Volunteer Family of the Year
By Melanie Ferris
Part two in a series of two*

 

Blair, Irene, Jack, and Leo are the Waldvogels. Blair has been on dialysis for five years. At age 44, he started this life-saving treatment for kidney disease.

“Although dialysis is difficult, I am very appreciative that there are dedicated and gifted medical professionals that give me the chance to carry on living a fairly normal life,” says Blair.

“Without them, my story would have a much different ending. The work that the researchers do is valuable and is helping so many patients today. With the number of patients on dialysis, it’s important to continue with research that will prevent kidney disease and improve treatment.”

A long road: The wait for a transplant
Blair has been on the waiting list for a kidney transplant for 5 years, since October 2010.

“The wait time for a transplant has been getting longer,” Blair says. “When I started dialysis, the average wait time could be anywhere from two to six years.”

Improving the system
“Now there are patients that have been waiting for eight years. It may be time to try something new in Manitoba, which now has the longest wait time in the country,” suggests Blair.

“Most people are in support of organ donation but many haven’t made that choice clear by signing up to donate their organs or discussing it with their family. To change the culture around organ donation, perhaps a move to a presumed consent (automatic opt-in) system may provide the boost we need here.”

“Having more organs donated needs to be priority one,” says Irene. “It’s very hard waiting for ‘the call.’ Your life, your family’s life, is put on hold in a way. It’s always at the back of your mind … when will it happen, WILL it happen, will it go well? Not knowing where you are on the list is disheartening. We don’t want to wait anymore. It’s already been five years.”

“Organ donation is so important,” states Irene. “If a life is taken, wouldn’t it be wonderful for that life to give someone else their life back? It’s a beautiful thing!

Looking ahead
Irene’s hopes for the future are simple: “That Blair gets his kidney transplant soon, that it goes well, and that we can make plans, even something as simple as going out for breakfast, without referring to a dialysis schedule first.”

She encourages Manitobans to visit the online registry at www.signupforlife.ca.

Manitoba Branch - 1-452 Dovercourt Drive, Winnipeg MB R3Y 1G4 - Tel.: (204) 989-0800 / 1-800-729-7176 
Charitable Registration Number: 107567398RR0001