A Rookie's Take on Dialysis: Ten Things I Have Learned So Far

photo cred: Alexandra Danae Chubachi

Okay, so I have only been on dialysis for about a month now (12 runs) which is why I am qualifying myself as "rookie".  For those who have been on dialysis longer, this article will probably make them smile knowingly (and then want to send me out to get coffees for everyone).

But for those who don't know anything about dialysis, and more particularly, for those who are staring down the prospect of starting dialysis soon, hopefully my ramblings here will be enlightening.

Here are a few of my early observations.

1.  Dialysis > Death

     This trumps all other observations really.  The first dialysis treatment on a human being wasn't until 1943 (http://www.davita.com/kidney-disease/dialysis/motivational/the-hist...).  Canada's first hemodialysis treatment for patients with chronic renal failure was performed at the University of Alberta Hospital in 1962.  Before those remarkably recent dates, the only option to kidney failure was a slow and painful death.  So, whatever inconveniences or difficulties I share in the rest of this blog, the overriding truth is this: I'm not dead!

2.  The Dialyzer gives me 10% kidney function

      I'm not sure what I was expecting.  I suppose I thought dialysis was like taking a tylenol.  I have a headache, I take a tylenol, I have no more headache.  This is not the case.  I had 6% kidney function, I take dialysis, I have 10% kidney function.  Consequently, there are still a lot of limits that I must function within. Diet is important and there is a long list of foods that I can't eat (chips, fries and chocolate being the most notable...kale and okra are also on the list, but I hardly notice them).  I am still quite tired and at times can feel sick.  Again, the real benefit is the aforementioned motto: I'm not dead.  

3.  Dialysis is the hardest work your body will ever do while you are "doing nothing"

     It all looks so quiet and peaceful lying there, wrapped up in warm blankets, watching TV or reading a book, but man, your body is woooorking.  All the blood in your body is being pumped out, put through a dialyzer and then pumped back in.  This happens over and over again for four hours.  Every part of your body is affected.  One of the things that I have struggled with is pounding headaches.  Those are slowly becoming less troublesome, but they have not been pleasant.  One time, after dialysis, I felt as though all the blood that was put back in my body ended up in the wrong places.  I felt so off.  It took a few days to recover from that.

4.  Warm blankets are one of the best things in the world

     One of the first things that happens when you go to your dialysis appointment is they give you blankets that have been warmed in a special oven.  Seriously, there aren't many better acts of kindness than that.  Kinda makes me want to throw all my linens in the dryer before bedtime each night.

5.  The dialysis community is pretty sweet

     The nurses, the nephrologists, the patients, the supporters, the staff, we all share a certain camaraderie.  There are knowing looks, insider dialysis jokes and warm smiles because these are people who are familiar with "the machine".  Everyone has a story.  Some, like me, are rookies to the whole process, others have been on dialysis for more than three decades.  But we all belong.  We are all in the dialysis circle.  

6.   "You will feel great" is a relative statement

     Prior to dialysis, many people said to me, "just wait, you will feel so great after dialysis".  While it is true that I feel much better than I did when my kidneys were tanking just prior to going on dialysis, I am nowhere's near as healthy as I was when my kidneys were at 40%.  I guess it is like Canadian winters in a way.  After two or three weeks of -30, many of my fellow Canucks are walking around in shorts and t-shirts with big smiles on their faces because it is a balmy -4.  I am thankful for how I feel.  I have adjusted to the new normal and I am glad for the health that dialysis provides, but it sure isn't the picture of perfect health.   

7.  Dialysis is a mental game as much as it is a physical game

     I remember thinking several years ago when I considered the possibility of dialysis, "who has time to go to the hospital three days a week for four hours a day?"  The answer: well, really sick people do.  I wasn't doing much else with my time; my calendar was pretty open.  Still, it kind of reminds me of when one of my daughters started kindergarten.  The first week was sheer bliss and wonder; she had been anticipating it for months, but when the second Monday rolled around and I had to shake her awake to eat breakfast and catch the bus she moaned, "how many more days do I have to do this?"  How could I explain to her that "baby, you've just begun"?  Some days, even now, I sigh as I think about heading to the clinic, getting all hooked up and then sitting there for four hours.  I've got at least another few months of this before transplant, but even then, there is no guarantee that I am done with dialysis for ever.  I have to choose to accept my lot without complaining; it is a daily decision to be positive.  I see this in some of the fellow dialyzers that I have met.  They still have a smile and a positive attitude.  I want to be just like them when I grow up!

8.  Cool drugs

     I just started taking a drug that boosts the hormones that produce red blood cells.  All dialysis patients need to take this drug.  Interestingly, it is the same drug that Tour de France racers have been disqualified for taking.  So, if you hear that I am applying for the 2016 Olympics just remind me that the IOC is very stringent in their testing.

9.  The role of the support person is critical and demanding

    My dearest and best friend, Jennifer, has been with me every step of the way in this process.  It is not a simple deal to have to sit there while your loved one goes through dialysis.  Sometimes I wonder if it is more draining to have to wait and not do dialysis.  We are slowly learning a routine that works best for us, that allows Jennifer to be there and involved, but also creates space for her to meet a friend or go for a walk.  We are trying to create a plan that is sustainable.  This doesn't come right away, but it is worth the effort to figure out.

10.  The transition from dialysis being "all of your life" to "a part of your life" is a slow one

     Dialysis is only 12 hours a week.  That still leaves me a whopping 156 hours.  So why does it feel that dialysis is consuming my life?  We have struggled with that question a lot during this first month.  The reality is this is such a strange, new, demanding and invasive process that it takes a while to get in the swing of it.  I am either preparing for dialysis, or sitting through the procedure, or feeling the effects of it after.  But that is slowly changing. A week ago, I had a Saturday when I felt "not terribly sick."  I did stuff.  Other stuff.  Non-dialysis stuff.  It felt great. I am sure that as the days and procedures continue I will feel more and more that I have a life outside of dialysis.  Just be prepared that it doesn't happen over night.  

In conclusion, one of the statements that has allowed us to experience grace through all of this is "I didn't get sick over night and I won't get better over night."  We are learning and growing through this new adventure.  Overall, I am grateful for the possibility and opportunity of dialysis and will hopefully continue to observe and learn as we go. 

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Comment by TimBergmann on March 4, 2014 at 14:22
Oh Leslie. I can totally relate to your feelings of fear and anxiety. I have a few other blogs that might also be encouraging. I am so glad that I can offer you a small hand up. You will be doing most of the work and you will be fine. It is amazing the kind of challenges we can rise up to face when we have to.
Comment by TimBergmann on March 4, 2014 at 14:19
That's such great news Beth. I am hoping for a transplant in April or May so it wasn't worth trying those other options. But we will see what happens with the transplant.
Comment by Leslie on March 4, 2014 at 14:19

hello mr bergmann

thank you very much for preparing the article. forwared to me by my girlfriend...I tend to not read about kidney failure it stresses me more but when I read 'rookie' and 'ten' things learned I was all in. have 17% function due to polycystic disease so am facing dialysis in near future. the fear of the lifestyle change, finding the time, loss of freedom, and general vulnerability causing me great anxiety...your post helped immensely.  much appreciated  all the best Leslie  

Comment by Beth Punga on March 4, 2014 at 13:25

Great post!  My husband has been on dialysis for 17 years, he has policystic kidney disease, but is otherwise fairly healthy.  The best thing for him was more and longer hemo, once he was able to run at home he could get as much dialysis as he could.  He felt much better running 4 times/week for 5 hours.  Later he was able to do nocturnal dialysis 6 days a week 8 hours a night, he feels really good.  Running at night means he is free all day, almost like a real human. LOL

Comment by TimBergmann on March 4, 2014 at 11:33

that's awesome Francine.  i am excited about getting my new kidney and discovering what the new normal is then.

Comment by Francine on March 4, 2014 at 11:30
I was on dialysis in 1995 for 4 years. I had a kidney transplant in 1999 and it's going to make 15 years in July. I remember those 4 years like it were yesterday. I also thought that my life was around dialysis. The hot blankets are the best. The nurses and staff are all so caring. Good luck and like you said at least you are alive.
Comment by TimBergmann on March 4, 2014 at 11:23

thanks Diane.  i know a blanket warmer would be so sweet hey?

Comment by Diane on March 4, 2014 at 11:18

Thanks for taking the time to write this. I myself was only on Hemodialysis 4 months before being put on PD. I remember how scary it was but how great everyone tries to make you feel. I was glad to not have to go back to the dialysis department but I tell you what I miss, the nurses and the warm blankets! lol Wonder if I can buy one of those machines for my bedroom? lol Good luck to you Tim!

Comment by TimBergmann on March 4, 2014 at 10:20

thanks iain

Comment by Iain McLaren on March 4, 2014 at 9:23

What a wonderful blog Tim! I love these top ten types of blogs - really easy to read and digest. This will be so helpful to those new to dialysis.

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