If you have been impacted by kidney disease, you will have some understanding of what is involved in living with something for which there isn’t a cure.
My wife, Dorothy, has kidney disease, and underwent a transplant on Sept. 23, 2013. Prior to that, she did peritoneal dialysis (PD) for almost four years. That involved being hooked up to a cycler and doing a fluid exchange for seven or eight hours every night — seven nights a week, 52 weeks a year.
This week, Lindsey Backmeyer of Kamloops, whose daughter, Ferris, is in need of a kidney transplant, took to Facebook to provide some insight into their situation.
Ferris is 2-1/2 years of age. She has had problems gaining weight and keeping that weight on, so only recently has her family been given the OK by their medical team to begin looking for a live donor.
In the meantime, Ferris continues to spend 13 hours overnight doing PD at home.
What follows is Lindsey’s post from Facebook . . .
“I am reminded daily just how hard living with ckd (chronic kidney disease) is for my sweet girl. Like this fine morning where she woke up way earlier than usual and we get to hang out on the bed for 2.5 hours to finish up dialysis.
“Most days are started with fits of vomiting and low energy levels. I’ve come to learn that this doesn’t necessarily depict a good or bad day. In fact most of our days are filled with smiles, afternoon/evening energy and cheeky toddler behaviour. The relentless vomiting is very normal for a pediatric dialysis patient — I say this only because I don’t know the adult world nearly as well.
“As of our last trip to Vancouver I’ve been informed Ferris is almost done the assessment process making her one step closer to a life-saving kidney transplant. Somehow, four weeks has almost passed and we are preparing to head down again next weekend. I am fairly certain the bulk of assessment will be completed and this discussion of living/deceased donors will be brought up yet again.
“I was informed that my health history of gestational diabetes and kidney stones in pregnancy makes me unsuitable for organ donation. The sobering realization that my girl’s chance at a better quality of life is completely out of my hands hit me harder than I had expected.
“A living kidney donor is Ferris’s best shot. Due to her age, she will likely need a couple of transplants over time. The first one is always the easiest to match and subsequent ones become harder due to the development of antibodies.
“Kidney’s from live donors are on the whole more successful and last longer than a kidney from a deceased donor. This means we want her first transplant to be the best kidney we can possibly find for her. The best kidney would be from a young healthy live donor.
“We are beyond ready, excited and terrified for transplant. I am hopeful we will see less vomiting, better energy levels, development in speech and language, oral eating and physical growth. These are the things other parents of transplanted toddlers have seen and I so badly want these things for Ferris.
“I can’t wait to say goodbye to 13 hours per day on dialysis. The freedom to stay out late, sleep wherever and have baths with her sisters will be nice, too.
“We are actively looking for a live kidney donor. It’s truly the most selfless act of life-saving kindness. Please share and help us find Ferris a kidney!”
If you are interested in more information about becoming a live kidney donor, here you go:
Living Kidney Donor Program
St. Paul’s Hospital
6A Providence Building
1081 Burrard Street
Vancouver, BC V6Z 1Y6
Toll free: 1-877-922-9822