Wayne Smith
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.
Northwest Kidney Center’s Lake Washington dialysis location.
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!):
Wayne at one of his dialysis sessions.
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.
Hi Wayne,
You seem to have a really good attitude about dialysis! I’ve been on it since October 2016 out in the Berkshires in Massachusetts. The way I cope is mainly reading – a good book can really transport me out of the chair. Sometimes they have to tell me to stop, that it’s time to go! I also look at it as a learning experience – I’ve learned so much about needing a tight tourniquet to get the needles into my rolly fistula, what the alarms mean, learning not to panic when I have a bleeder and letting the staff help me, what an infiltration means and using an ice pack to relieve it and so many other things. I have had quite a bit of problems with my fistula like blockages and have had several balloon angioplasties and one stent so far. Last year it was happening every 3 months – that was a drag. Also last fall I had a heart attack and stress-related cardiomyopathy while sitting in the dialysis chair! After a week in the hospital I recuperated and went to cardiac rehab for a couple months. Now I’m more committed to aerobic exercise on my off days. But the thing I always tell people is being positive and determined, even stubborn, can really help! I also enjoy connecting with the other patients and having a cheerful, upbeat attitude. Hang in there!
Thanks Christine, sounds like you’ve had a worse time than me. Especially with the heart stuff (wow!). Take care of yourself…
Thank you for sharing! My Daddy is from England. He landed in Ellis Island, NY around 1930.
I am the only one in my family with PKD and PLD. I hope it stays that way. I am considered in Stage 3 and GRF is good.
I will be praying for you that your gifted kidney comes quickly!
Thanks Michele. I’ve actually had an anonymous offer from someone to get tested, so something good has certainly come from telling my story!
I want to say that you are a remarkable individual with all that you are going through from the very beginning to where you are right now. My husband, Todd is a Kidney Transplant Recipient whose mother passed away of PKD in February 13, 1998, 2 months into our dating each other. Both of Todd’s sisters also came down with PKD and had transplants. I want to mention that both sisters did the HemoDialysis but, Todd actually did the Peritoneal Dialysis which was 8 hours per night while sleeping 7 days a week for 4 & a half years. It allowed him to continue working while doing treatment. I want to encourage you to keep your thoughts positive and keep moving forward looking ahead to the day you have your new kidney when one comes available. The day will come when a kidney comes available. Todd will be celebrating his 5th Birthday May 7, 2018. Hang in there and have an positive upbeat and cheerful attitude always. I will be praying that things continue to go well for you in the future. God Bless you in your journey!
Thanks Heidi – and best wishes to Todd!
my sister was on dialysis 27 years , she had one transplant that only lasted 3 weks. She also had lupus. She was always cheereful. She was careful with her diet and did not cheat,did her excercises . Very postive
That’s one of my fears about a transplant. Thanks for sharing…
This sounds like myself. Held off dialysis many years been on for almost a year and recently have been tested for different things because doctors say I’m at the top of transplant list. I’ve been on for 7years. I found out that you have to have a good sense of humor or you’ll be miserable.
You are right about the difference people and they’re stag of failure.
I can say that I’ve never had a better group of heath care people anywhere
They are loving and kind.and know exactly when you need a hug or kind remark.
I go to Bedford Dialysis.
After watching my older brother go through 6 years of dialysis and fall to this disease due from other body failures, I was pretty scared.
But the loving people at Bedford.made it. A comfortable environment
I am thankful that someone cared enough to be a donor and hope more will be so they’re be more survivors of kidney failure.
As you can see I’m not very good at espresing myself and even worst at writing it down but after reading Wayne’s post it sounded so familiar I had to comment. God bless you Wayne and everybody else suffering
Roger wilkerson
Thanks Roger. I agree with your sentiments. We hear so much bad stuff about the US healthcare system, but at the grass roots level I have nothing but overwhelming praise for the care I’ve been given. I sincerely hope you get the call very soon!
It’s sure a lot more customized than just 2 decades ago! I hope you get a transplant soon, though. Here are a few tips to make life easier (in case you don’t know already). Eat a small snack just before dialysis and suck on lemon drops to help you cope with the fluid restrictions.
Hi Wayne,
Am I correct in thinking that you were doing a fund raiser for PKD research? I got the info some while ago through the RickW connection? I thought that it was through Facebook but I cannot find more info? Is it too late to contribute?
I have had PKD for over 30 years so somewhat of a personal interest!
Best wishes
Ian Ramage
Hi Ian, sorry I’ve only just seen this! Yes I was, but you can donate to the PKD Foundation at any time using the donate button above. Every little helps this fantastic cause…
In case anyone is interested, I had a transplant on August 12th – if you wish you can read about it at https://lowwhistler.wordpress.com/2019/09/01/the-road-to-a-kidney-transplant/