Jean Lacroix, originally vice-president then treasurer of the Association Générale des Insuffisants Rénaux (AGIR), has suffered from kidney failure since 1990. After being on hemodialysis for four years, he received his first transplant in 1999. The return of the disease in the transplanted kidney led to a second transplant in 2008. As he himself says, dialysis and transplants save thousands of lives every year. However, people living with this disease have to accept some constraints and try to live as well as possible.
How many people in Quebec are affected by kidney function impairments?
Approximately 5,100 people are on hemodialysis, 800 on peritoneal dialysis (elimination of waste through the peritoneum instead of the defective kidney), 5,000 are in predialysis (waiting for treatment) and 2,100 people have received a kidney transplant. So, approximately 13,000 people and 13,000 other people, the family members, are affected directly or indirectly by kidney function impairments.
How can the treatments affect the daily life and the mood of the person affected, as well as their caregiver?
The treatments take a lot of time. It takes four hours for dialysis, plus waiting, transportation and preparation time ... and at the end of treatment, you have to be careful because there is a risk of a drop in blood pressure and loss of consciousness. Dialysis, it’s a third of a shortened day. Your social life ends up fading and fatigue also settles in. Not to mention the dietary constraints, risks of depression ... Many couples separate. It's very demanding on the caregiver. There’s no longer much time for intimacy either.
What can a caregiver do - if they want - to support and help someone on dialysis or who has received a transplant?
The role of the caregiver is significant: they provide constant empathy and support and their social life is disrupted. At the same time, for the person with the disease, the caregiver is their contact with the outside world.
Is it easy for a caregiver to get involved and to encourage the care receiver with managing their medications, their food and physical activity?
Very often, the caregiver is subject to the same dietary restrictions as the person with the disease, if the caregiver is the spouse. It’s easier than making different menus, but it's very restricting. My wife, who is my caregiver, also always has emergency medications, in case I forget them. Physical activities decline as well, so we walk in place, at least 40 minutes per day.
What stage is the most difficult for the relationship between the person with the disease and the caregiver: waiting for a transplant or after the transplant?
The dialysis treatments before the transplant are hard to accept for both parties. While waiting for the transplant, they allow you to continue living fairly normally, but they are very demanding. When the transplant stage arrives, it disrupts everything of course, but it is easier on a daily basis.
What are the main resources offered by AGIR?
The association has a toll-free information and referral line, which is available from Monday to Friday, 9 am to 4 pm, 514-852-9297 or 1-888-852-9297, for people with the disease, or in predialysis, and their caregiver. The first Friday of every month, we also have a guest speaker who provides information or shares their story in discussion groups, seminars or information sessions. And we also have our website (agir.ca), which shows all the resources available. This helps alleviate fear and help disseminate practical information on travel, managing treatment, etc.
Jean Lacroix has his own maxim to summarize his journey: “Dialysis is not hell; transplant is not heaven.”