How I Stay Motivated to do Home Hemo

This blog post was made by Henning Sondergaard on March 28, 2024.
How I Stay Motivated to do Home Hemo

People often ask me, “Isn’t it mentally challenging to do dialysis?” My honest answer always is, “Yes, it is but it’s so much better than not doing dialysis.” Sometimes I add morbidly, “The only advantage of not doing dialysis is that it doesn’t last too long…”

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Everyone grows tired of doing dialysis. In particular, those of us who do it at home are vulnerable to souring on the routine. We might not have the same support system as those who do in-center, where you meet others in the same condition. We do our treatments more often and therefore also spend more time on it. And even though most of us know our quality of life improves from doing more and longer treatments, and we feel much better in between our treatments, it can still be difficult to get through.

So here’s my trick to my “mental survival.” It’s all about attitude.

Vintage Pop Art Love and Hate Punching Fists. Vintage Pop Art Love and Hate Punching Fists. Great illustration of pop Art comic book style punching directly at you with the classic hooligan tattoo message. Tattoo stock vector

I know this is a trite old adage bordering on a platitude. So, allow me to dive a little bit deeper. Regardless of modality, dialysis is a condition of life. If you need it it’s like eating or sleeping. It’s there. It doesn't go away. Therefore, we all face a choice. We can either embrace it or we can hate it. It’s even OK to hate it as long as we are able to embrace it at the same time.

If you embrace it and tell yourself, this treatment is what keeps me alive – or however you want to formulate it in your mind – doing dialysis becomes bearable because you know it is necessary for your survival, just like breathing and eating are necessary to stay alive for everyone. When you have accepted it as fundamental for your survival it allows you to do whatever you want to do with your life as long as you consider this to be your new lifestyle, your new circumstance, a fact of life.

If, on the other hand, you decide to hate it and see it as an obstacle to living, it will rule you, and after a while it will consume your very being. You will live to do dialysis and there will be very little room for other things in your life. Hatred is a very powerful emotion. It has the ability to blur your vision, sour your lives and destroy everything that’s enjoyable and good in life. Once we realize hatred to be such a powerful destroyer of life, it should be easy to see that hating something you cannot live without very easily becomes all-consuming and we can become our own worst enemies.

You end up in a trap where you can’t live with dialysis, and you can’t live without it.

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These thoughts didn’t come easily to me. I didn’t like doing dialysis (I still don’t particularly like it) but I learned to live with it. One thing that really helped me was reading my fellow countryman, the philosopher, Soren Kierkegaard. Now, I will not recommend reading Kierkegaard to anyone. His writing is extremely dense – even when reading it in Danish, his and my native tongue. But this is what I learned from him that I now use in many aspects of life beside dialysis.

Freedom is a synthesis of necessity and possibility. It sounds weird but hang on.

We must all learn to face the necessities of life. Many of these necessities—like dialysis—lead to a state of despair. But we can’t ignore despair, because that will lead to hatred. We need to face and embrace the necessities of life to deal with the despair.Free hawk bird animal vector And when we embrace the necessities, we are able to see the possibilities that life gives us under the conditions we were given. This in turn makes us free to do whatever we desire, because we have embraced the necessities of life, like food and breathing—and for some of us, dialysis.

Sometimes, when people still insist on how they hate dialysis so much they just feel like quitting, I say to them, “I have always wanted to fly like a bird.” And then I pause and just look them in the eyes. It usually works. They understand and see the futility in their desire. For me flying would be the ultimate symbol of freedom. But since that cannot be fulfilled, I have to find freedom in the possibilities that are granted to me through the necessities of my current condition.

This is what makes me stay motivated to continue my treatment. Some days I hate it and that’s OK because I know I will also never be able to fly unless I crawl into an airplane or maybe a hot air ballon.

Now, wouldn’t that be cool?

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  • Richard

    Mar 29, 2024 8:57 AM

    Well if I wasn't already depressed about eventually needing to do HHD before this article certainly made it a front-and-center part of my thinking about my future life. I found out about seven years ago that I had CKD. Actually, I found out that I had it much longer but the poor information I received from the medical professionals never said anything about it or made suggestions to help me understand the situation and provide me with the information to slow the progress. Once told I had an eGFR of 32 and the other relevant numbers I took charge of my health and well-being and did all I could to slow the progression. For the next six years, I did all I could including firing of doctors who were slow or of no help to me in doing all I could to stay healthy. I managed to move my average eGFR to around 52. All good things eventually come to an end and over the last year, my average has reduced to around 46. Dialysis is in my future and getting closer with each day/lab work. It would be nice to hear positive news about HHD because this article certainly didn't provide any.
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    • Sheila Coles

      Apr 14, 2024 8:21 PM

      Hello, don't feel too despondent...HHD really isn't so bad. First and foremost and yes, it keeps us alive but also gives us some wonderful days off in-between, which are so much more appreciated than before the routine came along.
      I have learned to become confident doing my own cannulation - it no longer scares me! My husband does the machine, technical stuff and is now confident and very efficient. I think he takes a sweet pride in knowing, he keeps our lives going and we make sure our days off are special being one.
      The treatment itself for me, is about 2 and a half hours but with set-up, strip-down and re-set of my supplies tray for the next session, adds about another 2 and a half hours. So, starting by 5:30, we're done easily before "coffee-time".
      I can honestly say, my life is joyful...having enormous Faith in Jesus certainly is responsible for my coping so well and happily.
      Having a super nurse support, down the phone also helps a bunch but phone calls are less now, as we've become very comfortable with our routine.
      What seems hard at first, does become easy and there are SO many things you can do, in that session-time, to make the hours fly-by.
      Take heart - it's worth the sessions especially when the alternative isn't too great!! Stay alive and enjoy
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    • Dawn

      Apr 06, 2024 5:07 AM

      I am so sorry you are feeling this way. Yes, the thought of having to start dialysis is scary and can be depressing. I know in the 16 years my husband has been on this journey we have had our moments. After his transplant failed it was a time of total acceptance for us and life got easier. We weren't mad anymore, yes we still have days where we would rather be doing something besides dialysis. With home hemodialysis we get to be in control, we get to decide when and where we will do treatments. We have traveled through 27 states in the last 2 years. We have done treatments in a tent at a motorcycle rally. We have 14 grandkids and they all have sat on his lap during treatment. We spent the last 6 months living in our RV in Florida still doing treatment when and where we want. I would encourage you to connect with people that are living on dialysis and continue to educate yourself about dialysis and all the modalities. Nobody wakes up saying I can't wait to go on dialysis. This blog was about radical acceptance. Accepting the situation even when it is the last thing you want to do, because if you don't you will be angry and bitter. Keeping you in my prayers. 🙏🙏🙏
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