Dialysis: what to expect

I often get asked for advice from people who are about to start the BigD.  I mostly say that dialysis is no big deal.  It’s a very effective treatment that involves a change in lifestyle.  But saying this is not really enough, mainly because most people have their own expectations about dialysis that are often related to how quickly their kidneys failed.  So I thought it may be useful to look at some of those expectations and see how they hold up.

For some, the need for dialysis comes as no surprise; their kidney have been slowly failing and their doctor has prepared them for months or even years.  As a result, these people often develop a real dread of dialysis.  For those whose kidney failure is quick and unexpected, the shock of needing dialysis on top of the trauma of kidney failure does not come with anything like the same anxieties.

Friends and family don’t usually know much about dialysis, except that it’s a bummer, involving needles, machines and lots of time out of your life.  All of these things are true; I don’t know many people who would dialyse if they didn’t have to.  But it’s also true that dialysis gives you the rest of your life back, to live the way you want to.

Kidney failure is the real bummer.

If they fail fast and unexpectedly, you’ll switch from a healthy individual to a very sick, weak, grey, panting, aching, puffy and dopey one within a few days.  Forget walking down to the shops, visiting friends or having a nice drink after work – forget work too.  The contrast from healthy to unhealthy is so stark, that in a very short time most people welcome dialysis.   And they are pretty happy with the result.  After a week or so those lousy symptoms and feelings go away and their old life though modified, seems possible again.  (Don’t get me wrong, I’m not saying there is no resentment, anger and sometimes despair, I’m saying that people in this position are usually more open to dialysis.)

It can be more difficult for people with long-term kidney disease (like me).  I had a dramatic loss of function to one kidney in 1972, and at that stage found out the other kidney was not working.  Luckily the failed kidney was repaired and the remaining function was enough to get me by for the short to medium term.  But in the early 1990s I became increasingly unwell, and my doctor began preparing me mentally and physically for the BigD.  Physically, this was a good move.  My fistula was in place and a good size when I started dialysis in 1995.  Mentally, not so good:  I began to think of dialysis as a big black BAD.  It was a dark zone which represented failure, loss of freedom, maybe pain and general misery.  To me, the dread of starting dialysis was worse than the kidney failure.

So, of course I held off for as long as I could (much longer than I should have) and so was quite sick when I started.  And I was sure that it would be a terrible experience.  The needles were a shock, but there was local anaesthetic, so not much pain. The rest of it, being uncertain about what to do and what would be done to me, sitting quietly for four hours, turned out to be not that bad: a cup of tea, TV, a small snack, several blood pressure measurements and even a chat with others and the run was over.  The needles came out, dressings on and I went home.

After a week or so I started to feel pretty well, so I became ambivalent: I liked what dialysis did for me but I hated going there and losing all that time.   That feeling didn’t go away for years (I’m a slow learner).  But eventually it became clear: my BigD time is an investment in the quality of the rest of my day, my week, and my life.

There are few uncertainties now.  I put in my own needles, painless using the buttonhole technique; I have things to do during each run and the time goes pretty quick.  Dialysing five times per week means I can eat what I like (mostly) and I’m in good health, so I live an active life between runs.

So, what should you expect from dialysis?  You should expect a few seconds of needles that become less and less worrisome over time.  You should expect to invest around 15 hours of your time per week, so start thinking of things to do while you are there.  But mostly, you should expect to feel pretty well within a week or so of your first run.  It’s not something to dread; it’s not easy at first, but it gets easier to handle as time goes on, and it gives much more than it takes.

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18 thoughts on “Dialysis: what to expect

  1. I went through three years of declining function until one week last October they just gave up, and “wham zing bam boom” I was in the E.R. getting a permacath, then “powie” I was in ths hospital dialysis center that evening for my very first treatment. Shocked dodn’t begin to cover my emotions as all of a sudden I saw my own personal blood traveling OUTSIDE my body. Repeat 4more times over the next fives and I was feeling much better.

    Now, nearly six months later, I’m settled in at a center, making friends and flirting with the female technicians. I look forward to treatments, as that’s MY time. I take my laptop and work on projects that will make money, but I don’t have time to do in my office dealing with clients. I get my blood cleaned and several kilos off, so I feel energetic and useful to society and my family again.

    Yes, I know it’s life support, and likely, my life will be shorter. But for the meantime, it’s waaay better than what I had the last two years.

    Big D and Me are best of friends. I look forward to learning to do this at home, doing my own needling as much as possible, and traveling with my lovely wife of 30 years.

    Zack

    • Thanks for the great comment Zack. With your attitude, I am sure you will do well with the self-needling. It opens up all the doors to getting out and about. Keep in touch! Greg

  2. How were the dietary changes and fluid restrictions for you at first? I imagine those are no longer issues on home hemo, as opposed to in-center.

  3. Hi Karol, thanks for the comment. Diet is a big part of the BigD while you are dialysisng 3 times per week. It becomes less of a requirement when you dialyse more often, eg 5 times a week, or nocturnal dialysis (every night, through the night), which is certainly easier at home. And there are many other benefits. But the fist thing to do is look for ways to have shorter, more frequest dialysis. Regards, Greg

  4. I came home today from my second dialysis session very concerned that after six tries. the nurses were unable to establish a line. Fortunately, I came across your website and was very much reassured after learning about other people’s experiences. I also came way with a much more positive attitude about what to expect and how fortunate I am to have access to this kind of technology and support. Thanks for sharing it.

  5. Came home this afternoon after my second dialysis experience quite concerned. After several tries, the nurses were unable to establish a line, my arm was swollen and bruised and I was told to come back in three days for another try. Fortunately, I came across your site and was most reassured when I learned that this was not an unusual situation and that things will get better. Needless to say, I will bookmark your site for future reference. I now realize how fortunate I am to have access to this technology and to people willing to share their experiences with it. Thanks!

    • Great to hear from you Carl, thanks for your comment. You are in good company! The first few weeks are a trial, but you will get through. Keep in touch! Greg

  6. hi first time on your blog site .have been doing home hd for more than 3 years now. Live alone & do nocternal 8 hours 3 times a week to fit in with work & lifestyle.I usually try & avoid surfing till at least the afternoon after Dialisis. I am 53 now & hope for A transplant & am on the list but am a little concerned about the anti rejection drugs.I would highly recomend anyone doing home dialisis as lets you take responsibility & freedom of time to be more flexible with your treatment to suite your life work etc.

    • Hi Brett, thanks for your post. I agree with you that home dialysis is ideal, but for me, there are ‘if’s. I don’t dialyse at home because I want to keep dialysis separate from my family. Firstly, I think it can be a heavy burden for a partner (on top of changing his/her life to be with someone with kidney failure) to ask them to help with BigD every time I dialyse. Secondly, I didn’t want my kids thinking of me as a dialysis patient first and Dad second: out of site, out of mind. So, if you live alone, and if there are no kids, home BigD would be great. I also agree that nocturnal dialysis is a wonderful thing, giving you back your lifestyle. Going surfing a few hours later! Wow! Many people would not think it is possible.

      With regards to a transplant, if all goes well, the anti-rejection drugs are a small price to pay. If things are not going well, they become quite a burden.

      Keep in touch! Greg

  7. hi big d
    I am a young 33 year old dialysis patient who has been dialysing on and off for three years. I have just read most of your posts and are amazed by your positive viewpoint on dialysis. I have been looking for this for years – I often think we don’t support each other enough and am looking forward to future posts. is there anyway you could do more on diet and particularly yours?
    replying to this topic – starting dialysis – I find it takes me a good month to start to feel better – but agree with another post that finding the right clinic is key!
    regards
    sarah

  8. Greg,
    It really makes me feel much better reading your blog as well as comments from your readers. BigD, in my case crept up on me over 8-10 years; and for most part of these 10 years( the first 8) I was confident and optimistic about keeping my kidney disease at bay. But the last 2 years were a struggle, emotionally, as I tried my very best to avoid (what I considered then as the end of my life situation) dialysis. The stress of fighting the disease was so much that when I finally went to ER for dialysis and came out, I felt relieved, I now knew that there was nothing to fight about, you just weigh your situation, understand the best options and deal with it. That really made me feel less stressed out. It was not that I did not feel depressed at times, sad and unsure of what quality of life I will have with my family (wife+ 6 yr old son and 2 yr old daughter), but the overall pressure of “trying to avoid something that was not in your control” disappeared. What I was trying to say is, BigD is a bummer, but I am hoping that I will overcome the negativity around it and make the best of my remaining life for my family and myself.

    Once again thank you for putting up such a great site

    Sujit

    • Thanks Sujit, it is good to hear your story. It is easy to build up a dread of dialysis when you know it is part of your future. But when you are ready physically, people often find that they are ready mentally too. Good luck and keep in touch! Greg

  9. Hi I’m going to start dialysis in a few weeks and am scared and afraid of all things that are going to happen to me. I’m married and have 4 children and haven’t been able to get my head around the whole idea that my kidneys are shutting completley and I’ve no one to speak to about how I feel as when I try and talk to someone they look at as if I’m looking for smpithy and they make me feel worse for even wanting to talk about the kidney problems and then I feel guily about burdening them with how I reailly feel all my family father, mother, brothers, sisters and more all think im copeing well but no one has took the time to say how are you feeling about all this thanks for listing.
    Nora.

    • Hi Nora. Yes, it is a scary time. One thing you can do is contact your local kidney health society and talk to them. I am sure you will find a usefil and sympathetic person to talk things through. To find them, Google something like: “kidney health society {your state}”. All I can say is that it doesn’t turn out to be as as you imagine. It’s a drag losing the time, but you will feel better and get much of your health and life back. Good luck. Greg

    • I have been on hemodialysis for almost two years now and while the novelty has completely worn off, I have rationalized the whole situation as 12 hours a week that keeps me alive to enjoy the rest of the week. I consider it a part time job that I don’t particularly enjoy but I have to do to do other things I enjoy.
      I’ve learned to enjoy the peace and quiet to read books on my e-reader, listen to my favourite music on an iPod and just lay back and think about what I’ll do on my days off. Where else do you get three afternoons a week completely to yourself?
      I know what you’re going through: the uncertainty, the disappointment that this happened to you and the reliance on a machine to keep you alive. But the plus side is that the technology works, the people who operate it are great and when you finish a treatment, you can go out and look down at the grass rather than push it up from below.

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