I came to ImPACKD with many years of experience as a caretaker but lacking a true understanding of the impact calcium may have on a kidney patient.
And I should have been aware because my husband had been taking 3 to 4 Tums per meal for most of his 8 years on peritoneal dialysis and one would think I would have paid attention to the recommendations for a healthy person - never mind a kidney patient who can’t expel this mineral in the normal way.
There are many things I didn’t and don’t know. Have you ever had a dietitian give you advice and find your mind can’t take it all in because you are tired? Or forget it all a year later? Has the hemodialysis machine start beeping and you don’t understand what it means? Should you be scared or should you just trust that everyone knows what they are doing and things will be alright in the end.
Fortunately the medical people who care for dialysis patients do know, they are the experts. I hang on by a fingernail and wish I could know and help more.
Some people start dialysis after years of taking care of themselves until the time comes to choose between the different modalities and they come with a calm time of learning and preparation. My entry into peritoneal dialysis for my husband was relatively smooth with great training at the kidney clinic, but my entry to the hemodialysis unit was sudden and shocking. I cried for a long time with our new lifestyle.
We had spent eight years at home, travelling when we wished, a more relaxed diet, twenty-four hour a day dialysis cleaning that left my husband with relative energy and health. We lived one hour and twenty minute drive from Halifax and having to suddenly travel three days a week no matter what the weather was exhausting and discouraging.
Then a group of people started to gather in our hospital cafeteria every afternoon to talk and exchange ideas and from there I think we all gained information and strength from shared experiences. We weren’t the only ones travelling a lot of miles each week; we weren’t the only ones who didn’t understand the machines; we weren’t the only ones who worried. A shared worry is a divided worry? It seems that way anyway.
Eventually we formed a local advocacy group and I was fortunate to be asked to be a member of ImPACKD with a Canada-wide agenda.
This I have learned, we are not powerless. We are not alone.