Dialysis Success: What’s in a Word?

This blog post was made by Nieltje Gedney on October 1, 2020.
Dialysis Success:  What’s in a Word?

Recently, I have noticed a lot of discouraging posts from members of the Facebook dialysis support groups. People are frustrated with their treatments, dialysis machines, even their lives. It got me thinking about all things that are kidney-related.

Have you ever noticed that, unlike most other chronic illnesses, kidney disease and dialysis are all referred to in a negative context? Think about it: kidney failure, end stage renal disease, end stage renal failure. We are not adequate when we don’t meet clearance. And don’t forget my all-time favorite, we are non-compliant if we do not adhere to an arbitrary dialysis treatment protocol that ultimately may have no relevance to the treatment we actually need.

It’s no wonder that dialyzors are frustrated, discouraged and angry. If I had to think about myself in a negative context on a daily basis, I probably would have given up a long time ago. I am reminded of a conversation I had with a nephrologist from Canada, who asked what I thought he should call his patients who dialyze. Are they clients, customers, patients? He sincerely wanted to know. I replied that I thought that dialyzor was the best word to use, because patient had the connotation that we are sick. I prefer to think of myself in good health, thanks to a dialysis treatment that keeps me that way. I suggested that, similar to a diabetic, whose life is controlled with a shot of insulin, we are just people who need a dialysis treatment to go about our activities of daily living—hence a dialyzor.

While dialyzors can be patients, I hope that being a patient is not the sum of our daily existence. I would hope that, between dialysis treatments, one can return to a somewhat normal life, and forget, even for a short time, the need for this life sustaining treatment. Dialyzors are also clients of professional clinicians, whom we consult on a regular basis about our treatments and our health, and we are customers of dialysis clinics, who provide for our on-going care. In the outside world, clients and customers are treated with respect and earn your patronage. What about that old saying “The customer is always right”? Do you feel like a valued customer at your clinic, or a respected client by your medical team? By the very nature of successfully performing our home dialysis treatments, haven’t we earned the right to be respected by our clinicians? Shouldn’t we be an integral part of our team, participating in shared decision-making about our care—and not merely a silent participant?

When do we get a say in our performance? A dialyzor’s performance review arrives annually in the form of a care plan meeting, mandated by CMS. How many of us have actually been invited to participate in our care plans? For many of us, a care plan is simply a checklist we are asked to sign, with pages of criteria that we are judged on with only two choices: whether we have met or not met each goal! For example, your home dialysis machine breaks down and you miss a treatment. Therefore, that goal has not been met for the year. Your phosphorous lab comes in high one month—not because you forgot your binder or ate the wrong foods, but because your PTH wasn’t monitored monthly, and therefore your Vitamin D supplement wasn’t adjusted appropriately. You guessed it: goal not met.

The care plan just reinforces this feeling of failure. Not once, in 7 years, did I ever receive a pat on the back for a job well done. Just a “sign here” and acknowledge your failures. It’s no wonder we are discouraged and disheartened. Think about a cancer patient who has competed treatments, referred to as therapy (defined as healing, or remedy), and told s/he is in remission (a reduction or cutback of the cancer). Not so with dialysis. The most we can look forward to is an increase in our dialysis, for not meeting pre-determined goals. If you are like me, and are performance driven, you want to succeed, each goal not met is interpreted as a personal failure.

Another example to think about is our diet. Has anyone ever told you what you can eat? Not usually. Most of the time, when one of our lab results is off, the dietitian hands you a printout and tells you what you can’t eat. Has anyone taken the time to actually talk about diet and nutrition, about replacing harmful colas with say, a homemade lemonade? Or my personal favorite, recommending that you replace real cream in your coffee (which is low in phosphate) with a coffee creamer substitute that is made of chemicals, or replace real butter with oleo or margarine (more chemicals)? Do you spend your days thinking about what you can’t eat, and feel deprived? Or do you think about how to prepare all the good foods you can eat into a meal that you can enjoy?

Ultimately, we are just dialyzors, people caring for ourselves in the comfort of our homes. Isn’t this a good thing? Shouldn’t we be deemed successful, not just adequate? Instead of the demeaning happy faces that appear on our monthly lab reports, and sad ones when we “fail” to meet established goals, wouldn’t it be great to get a pat on the back and a congratulations for a job well done?

A job well done is what home dialyzors are doing. Besides caring for families, often working full or part time, and living the best lives possible, we also have a full time job performing our dialysis treatments, sometimes alone, or with the help of family or friends. In a job, when you do well, you get a performance review and a raise. With home dialysis, we live each treatment in fear—of being “non-compliant,” of making a mistake, of our machine breaking down, and so many more unpredictable hiccups. And yet, in spite of all these obstacles, we succeed. We are healthy, we live our best lives.

So, I am here to ask each of us to start thinking about our lives in a different way. We are kidney successes—not failures. We are simply normal people who need a dialysis treatment the way cars need their oil changed. Every day we triumph over adversity when we fix an alarm and complete a treatment. We accomplish, singlehandedly, in our homes, what it takes an entire clinic of professionals to do in-center. That is truly an achievement—not a failure.



Comments

  • Dennis Tolliini

    Oct 14, 2020 1:16 PM

    A great article and thought's that speak volumes on the adage "the power of positive thinking" and the need to encourage rather than chastise and help with solutions that provide a path for people to adjust and improve.. Congratulate success!!
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  • Marcia Burgess

    Oct 05, 2020 11:03 AM

    Great read. You are 100% correct in positive thinking and living. My husband started dialying at the age of 28. I 1986 there were no centers so you had to drive an hour 1 direction to a hospital. So he chose to dialysis at home. The machines were pretty primitive in 1986. You had to set every setting manually with knobs and dials. Anyway my husband was a very positive person. Always had a smile on his face. His faith was so strong. He always found something positive in anything that would go wrong whether it was with dialysis’s or just life.
    My husband dialyzed for 33 years. The last 4 yrs were hard with loosing fingers and 2 below the knee amputations all due to long term dialysis he was not diabetic ever. I lost him 7/21/2019 due to sepsis at the age of 62. Even thru the hallucinations we found something positive. One thing was a visit from his dad and brother who had already passed away. He was so happy because he knew he would be reunited soon. I guess what I am trying to say is stay positive, learn your body, know what symptoms are attached to what high or low numbers. BELIEVE and as my husbands saying was “I get to dialysis I don’t have to”
    God Bless You All!!
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  • Carole Magee

    Oct 04, 2020 8:44 PM

    Thank you for this post and a new word for our vocabulary.....dialyzor. I like that. And I have signed up for a subscription to this site. Thanks for that as well. Our labs are for the most part good and to the point we are frequently "boring" to clinic. I am hoping we will be able to continue with telehealth until this virus has been contained. Until then we will be dialyzors doing our very best to stay safe and stay healthy at home.
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  • Matt

    Oct 04, 2020 9:28 AM

    Great article. It will make a difference.
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  • Eric Weinhandl

    Oct 04, 2020 2:15 AM

    Wonderful perspective. I will remember what you have written as I write, too.
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  • Becky Salinas

    Oct 03, 2020 4:54 AM

    Great Post. I am my husband's care partner. I'm always afraid of something going wrong and being labeled as non compliant. We don't want him to go back in center and we try really hard. But you're right. We are successes... for almost 7 years now. I found this week that some protocols have changed at my clinic and nobody took the time to let us know. We have an excellent team and our nephrologist always makes sure to tell us we do a good job. My husband's labs are almost perfect except for a month or two. However, I have found out that the way things are done have changed, and we were not notified... and most of the time we are overlooked is because we have been doing HHD for so long, they forget about us. They forget we're not new patients and our training was 7 years ago. So sad to think not so many make it this long... but for us, I would like to think it's a success. We're still here, and strong as ever.
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  • Debra Maynor

    Oct 03, 2020 12:28 AM

    Thank you for a great article!
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  • APM

    Oct 02, 2020 10:18 PM

    Enlightening outlook! Thank you for this boost. I will be using the term dialyzor from this point forward.
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  • Jennifer Prince

    Oct 02, 2020 9:47 PM

    Great post. I fully agree and always favour a nephrologist that treats me like a “real person “ and not just a dialysis patient.
    Dialysis keeps me alive and for that I am grateful but it’s only a small part of my life. First I am a mother, wife, Respiratory Therapist and a home dialysis patient.
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  • Ant

    Oct 02, 2020 7:58 PM

    Stirring and insightful; thank you for a great article!
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