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 Ron Grant on January 30, 2017 at 8:35pm

Good read..thanks. And keep the humour up..it's everything.

Comment by shirleymac on September 24, 2015 at 8:17pm

Thanks Tim for sharing your experience. I think I'm about 18 months from starting dialysis if all goes well. I appreciate hearing about other's experiences.

Comment by TimBergmann on August 14, 2015 at 12:34pm

hey Terry.  oh man. we drove by the dialysis centre yesterday and all those memories came flooding back on me.  i pray that you do well on your treatment. i totally remember those days of feeling so tired.  i'd nap twice a day.  my gfr went down to 5%.  good luck brother

Comment by naptownblue on August 7, 2015 at 3:44pm

Tim - I found your blog entry today after Googling "my first dialysis treatment". Thank you for writing what you did - it's awesome knowing there are supportive people out there. While I wouldn't wish kidney disease on anybody, I'm grateful there are people like yourself who are willing to share insights and words of wisdom and encouragment.   

I start my first dialysis treatment next week. I'm at GFR 13 and feeling very fatigued and sick most of the time. While I understand that dialysis won't make me 100%, I'd love to have at least a little energy back.  

I'm age 45 and had all the energy in the world - even down to the 15-20% kidney functionality range.  But now that I'm in ESRD range, I can really feel it and have never felt so "tired" in my life. I'm prepared for the long haul and taking this head on.   

Congratulations on the success of your new kidney so far - hopefully I'll be in the same situation someday :)

Terry in Indianapolis

Comment by cliff.uk on March 10, 2015 at 4:48pm

Hi there Tim, Great to hear you have had yr transplant...that's really good to hear. Also good to hear yr thinking it's part of you, Positive thinking. My first lasted about 10 years and it went downhill very quickly. Then I had one donated by my brother which was a perfect match but unfortunately it never worked. Then I went 10 years on dialysis and while I was doing my four hours I was told they had a kidney but it was not a perfect match and gave me my treatment time to decide. they said it was probably my best chance with my age, history also my anti bodies. I went ahead with operation and it will be 7 years in July this year. When I lost my first it was devastating as I lost my Dad to Cancer round the same time. But it was worse when the one from my brother never worked. But you carry on don't you. Funny thing is it was on my last stint on dialysis that I finally stopped fighting it and accepted it. I was more relaxed on treatment and the time went more quickly. Anyway Tim, I think you are courageous and positive and hope yr kidney lasts a very long time and who knows it may last you out .lol. Lets hope so eh. I does happen for a few. It would be nice know how you are going so I will my eyes peeled for yr updats on here. All the best and dont think to much about losing yr kidney to much,enjoy life the best you can. All the best Tim. Take care of yrself and yr kidney.  Cliff. 

Comment by TimBergmann on March 10, 2015 at 8:10am

Hey Cliff.  thanks for the note.  So far this kidney is working perfectly and i've just passed the 9 month mark.  part of me feels like this is going to last forever but i know it isn't.  how was it for you when the first and second transplants began to fail.  i don't know how i am going to be able to handle that.  you sound very courageous and positive and i hope to be that way as well.

Comment by cliff.uk on March 10, 2015 at 6:40am

Hi Tim, Hope things are going well for you. I see yr article is over year old so it would be nice to know how you are going along a year on. I was diagnosed with kidney failure in 1986 and started dialysis in Sep 1988. I am now on my third transplanted kidney and going along nicely, get very tired but I think that's more down to my age...53 this June and the bashing the old bod takes over the years. Hope to hear from you. All the best. Cliff.

Comment by Jen Koss on March 8, 2015 at 7:37pm
Thank you for writing this amazing article! While I am currently anticipating celebrating my 15th anniversary with my mom's kidney, I am also dealing with the reality of stage 4 renal failure. The next stop on my journey is going to be dialysis. At times it's really hard to keep up a positive attitide -especially on the days when I'm so tired I could cry -but as a friend of mine likes to say... I'm still looking at the grass from the top, so overall things aren't that bad. I try to remind myself of that when I start getting down. Your story has given me a lot of encouragement!
Comment by Mossy on March 8, 2015 at 2:01pm

Keep going Tim. I first dialysed  in 1990. Things have come a long way since then . You're correct that it seems the process takes over your life, but it does become routine. As you say the main thing is to stay alive and the best way to do that is to play by the rules. My first transplant was after 18 months of dialysis but I was fortunate enough to be part of a self dialysis unit. Taking back the control of my life was key to being well enough to keep my graft for 18 years. My  second stint on dialysis was even better. I got to have a machine set up in my spare room and I dialysed nocturnally every 2nd day but the benefits of the gentle nocturnal process meant that I got my life back and I was extremely healthy when it came time for my transplant. Keep healthy and cheat death!

Comment by Candace Bazile on March 6, 2015 at 11:01pm

Hi again. Thanks for responding. I had a very trying and a very valuable 3 and a half years with my transplanted kidney. It was a cadaver kidney. My body rejected it right after surgery. The doctors at Emory put me through a rigorous anti-rejection treatment. We were able to save the kidney. I had several rejections after that one, but I also had 3 and a half years of life off of the machine. Once I was able to calm down and settle in with all the daily challenges, I was able to appreciate the time I had. I know that I will do it again. My bad experience didn't diminish that desire in me. I hope the very best for you too.

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