At the PKD Foundation, we honor various and unique patient perspectives to show the broad scope of experience that PKD patients face with this disease. This includes the reality of dialysis, which can go undiscussed in our community in comparison to kidney transplants. We recently reached out to Wayne Smith, who is currently undergoing dialysis treatment while he waits for a kidney donor from the transplant list, to learn more about his experience and his story:
I’m typing this with my left thumb. It’s a skill you perfect as a dialysis patient and one of the many things I’ve learned since starting late in 2017. But let me tell you about myself first.
My name is Wayne and I’m a 57-year-old Brit, working and living just outside Seattle where I’ve lived for just over ten years now with my wife and three children. I also have two adult daughters living in England with PKD.
PKD has been in my family for a long time. My father underwent dialysis in the 70s at St Helier Hospital just outside London. Sadly, he died when I was nine. Throughout my life I was misinformed that the disease only passed through the female line, and therefore was not diagnosed until I was in my 40s.
I have been with my nephrologist Madhuri Kandala, M.D., for about five years now and she has been a critical part of my success coping with the disease. She got me onto the transplant list at the right time and arranged for my fistula access to be created in May 2017, perfect timing for my eventual start of dialysis just after Thanksgiving that same year.
I was able to “put off” starting dialysis for quite a while because I didn’t have any of the classic symptoms, so it was hard to actually arrive at the Northwest Kidney Center’s Lake Washington location for the first time, knowing that this marked a turning point in my life.
My access, being only six months old, proved somewhat problematic at first, leading to some comical moments “finding the vein”, but the staff at the dialysis center are absolutely fantastic. It certainly helps not to be needle-phobic as you watch it all going on. The newness of my port also meant that for the first month or so, my access arm had to stay completely still – to the point of taping it to the chair. Even now, I have to keep it still to avoid problems with blood flow (see why I’m typing with one thumb?).
After long and careful thought, here are my main two learnings from my first three months (and to be honest, I have enough material for a book and comedy act!):
Firstly, the boredom of four hours of dialysis is by far the worst part. I came into it thinking, “Wow, four hours to relax!” – nope, not a bit of it. Yes, there’s a TV, yes I can bring a book, yes I can type one thumbed into my phone, but there are still distractions: constant alarms, constant comings and goings, etc. It takes the mind of a Jedi to focus with everything going on.
Secondly, the humanity. I consider myself reasonably fit and healthy. It’s sobering to mix with lovely people, many of whom are elderly, missing limbs, so frail that family members lift them like rag dolls into their chair. It’s a constant reminder that dialysis keeps me alive and makes me yearn for a cure for my children – and keeps me supporting the PKD Foundation.
To learn more about dialysis, please visit our website.