Dialysis and Disagreement

two-cartoon-men-yelling Repost from a while back but still relevant. I got the following comment the other day in response to my blog posting “Dialysis and Opening Day”.  I figured I’d share it with you because, although it’s rather bitter, it makes some interesting points.  And, I disagree with those points.

“Wow this post is unbelievable, you sound like you should open your own personal dialysis center. Complaining about everything in sight, you sound like a cranky old man that hates everyone and everything. Perhaps you should quiet down and enjoy your life saving treatment instead of criticizing everything and everyone in sight, like I previously said if you’re so unhappy why don’t you invest a few million dollars and open your own perfect dialysis center, though I’m sure even then you’d find a whole bunch of things wrong with it. Honestly some people’s attitude is unreal, do you even pay for your dialysis treatment? or do you get it for free? and what the hell is this?! “One thing, you don’t want to do is piss off dialysis patients on a Monday morning.” LOL what are you going to do ? write a nasty post it note or blog about it ??”

The email address he/she left was not valid — some people don’t have the courage of their convictions, I guess — so I couldn’t reply to it in private but I can reply in a blog posting.  What the heck, I was looking for a subject to write about anyway. In the original post, I was blowing off steam about the new dialysis center and the failure of the center to consider the needs and requirement of patients and staff when they designed and built it.  Not only was the center poorly designed, the opening day was a disaster.  In the mind of the person commenting, I should just have taken what we’re given and been pleased with that.  But, I’m not that sort of person.  I feel that if someone doesn’t speak up, the world won’t be a better place.  In the case of dialysis patients, we have some rights and we should have a voice in our treatment.  This person seems to believe that we should just be happy we have a place to dialyze.  I disagree. He/she says I sound like a “cranky old man that hates everyone and everything”.  That’s hardly the case.  I was definitely upset and cranky that week and, frankly, I’m an old man.  But I don’t hate everything and everyone.  I don’t even use the word hate because I don’t like the word.  It creates more problems and makes bad situations worse.  So, on the point that I hate everyone and everything, I disagree. I really don’t like it when providers mkde decisions for us (the patients) and don’t involve us in the process of our treatment.  I’ve written about and advocated for “patient-centered care” for a while now.  It’s an important aspect of our care that I really believe in and I want to make sure that we move from the traditional medical treatment-centered model to one that considers all the needs of the dialysis patient.  The person making the comment seems to feel that we should just take what we’re given.  I disagree. In the treatment-centered model, patients do as the commentor suggests and “should quiet down and enjoy your life saving treatment instead of criticizing everything and everyone in sight“.  I should just take what I’m given by the provider.  I shouldn’t strive for better conditions.  In the case of the new center, I shouldn’t advocate for improvement.  I should just get into the treatment chair and remain quiet for four hours, three days a week.  The fact that the chairs are uncomfortable, there are no clocks, the nursing station is out of out of the line-of-sight, the staff is complaining about the layout, the other patients are unhappy with the new center, etc. etc. etc.  All that should just remain as it is and we should be happy with what we get.  I disagree. The commentor suggests I should open my own center. Why should I do that?   I wrote about the perfect center beginning in “Dialysis and Dreaming” and again in “Dialysis and More Dreams“.  I mentioned Dialyspa where a doctor and patient combined their talents and created their idea of the perfect dialysis center.  It inspired me to look above the fray and imagine that dialysis could be patient-centered, where dialysis could be centered around the needs of the patient and not just the provider.  Just because I’m unhappy with the conditions, I don’t think I have to open my own center.  If I did that I’d have my own airline, my own state, my own car manufacturer, my own TV network, etc.  I don’t think I have to open my own center because I’m unhappy with the conditions of the new center.  I disagree. He/she asks, “Do you even pay for your dialysis treatment? or do you get it for free?”   I can tell you that someone pays a HUGE amount for my treatments.  The typical cost for dialysis is about $86,000 per year per patient.  There are over 25 stations in the center running three shifts per day (six days a week).  That means revenue for the center is about $7 million per year.  Not a bad income for one center and the provider, DaVita, operates several thousand centers so this is big business and quite profitable.  In the case of Private Pay insurance, the revenue for a center is even higher as I pointed out in the posting, “Dialysis and the Money”.  However, regardless of who pays or how my bills are paid, I believe I have a right to express my complaints if I am dissatisfied.  But, this person seems to think I should remain quiet.  I disagree. I worked for over 35 years contributing to Medicare and paying for medical insurance.  I still pay over seven hundred dollars a month for private medical insurance.  Nothing I get is “free”.  If I went into a Macy’s and was unhappy with the service or the items I purchased, should I just be happy they gave me anything for my money?  I don’t think so.  And, medical treatment is no different.  So, I disagree. Even if I got dialysis for “free”,  why should that mean I should remain silent about my disagreements with the services I receive and the treatment center I use?  Curiously, this person’s IP address comes from Canada where medical treatment is “free”.  They have universal healthcare.  They don’t “pay” for private health insurance like we do in the US.  So, it’s rather curious they would make a point about about not complaining about something they get for “free”.  In the US, however, we don’t get our medical services for “free”.  We pay dearly for it.  Again, I disagree. So, yes, I blogged about it.  And now I blogged about this person who disagrees with me.  That’s the cycle.  We all have a right to disagree.  This person disagrees with my posting and my complaints.  I’m glad he/she made the points they did.  It motivates me all the more to make my complaints heard and, more importantly, to make changes in the conditions patients have to endure from providers.  I don’t intend to remain silent.  I never have.  It’s not my nature.  If I’m unhappy with the service, I make it known.  I do that not only for myself but for all those who might also be unhappy.  If we all remain silent and didn’t express our displeasure as the commentor feels we should, we’d be a sorry lot. Ironically, this person who made the comments believes I should remain silent but he/she made their disagreement with my posting known to me.  He/she disagreed with my blog posting and didn’t remain silent but thinks I should have remained silent about my dialysis center and treatment.   I disagree completely with that and I will continue to post about any complaints I have and advocate for patients everywhere.  I disagree fundamentally with everything the commentor wrote except with the right to disagree. DevonTexas © 2012

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About DevonTexas

I am a person with ESRD (End Stage Renal Disease) which means my kidneys don't work. Forty or so years ago that would have been a death sentence but today there is Dialysis which means I can be hooked up to a machine that will clean my blood as the kidneys should. Three days a week, I go to a center and have too very large needles stuck in my arm to remove and replace my blood as it passes through a process where it's cleaned and the fluid is removed, a process taking a little over four hours each time. I want to advance knowledge about dialysis so that other patients can learn from my experience and mistakes. We shouldn't have to reinvent the wheel, eh? There is so much to be learned and experienced about our predicament. There are vast resources available to support us and enrich our lives but many patients don't know about them. There are also many issues that we have to deal with whether we want to or not. So I blog about them. All comments are confidential until I approve them. If you don't want your comment public, let me know and I will respect that. So, feel free to leave a comment. Enjoy.
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7 Responses to Dialysis and Disagreement

  1. Jim Takita says:

    Cheers to you. I enjoyed your comments and agree with you.

    Jim Takita

    Portland, Oregon
    12/6/12, 1:32PM

  2. Diane says:

    I would have complained about the exact same treatment that you had that day and I have universal healthcare up here. I laughed that you posted that our heathcare was “free”. While I don’t pay what American’s do, (And I am thankful for that) we pay off our taxes due to our income. I don’t know how many can afford dialysis in the states. (I know that is what you meant by the quotes!) This person that messaged you must have no understanding what we go through, and they need to keep their own mouth shut about it. Keep on keepin’ on my friend!

    • DevonTexas says:

      Thank you, Diane. I really appreciated his comments because they caused me to reflect on the situation and gave me the opportunity to post about it again. So it all turned about quite well.

  3. Funny,despite the fact that we ‘don’t pay’ for our healthcare (yes,we do,it’s called taxes)….the attitude can often be the same Victorian attitude,as in ‘shut up & be grateful’.

  4. debbzdays says:

    Devon, you know I love ya! With that being said the person who wrote that nasty comment to you is not involved in dialysis for the patients or the compassion. Likely it is someone who thinks that her job is to come and socialize for 12 hours while occasionally putting on a patient or taking one off. Please promise me that you will always be diligent and picky with your care! The type of CCHT’s that are in your section during your entire treatment, know when you are about to cramp or crash are the ones who have compassion and care. My patients at my old clinic never had to tell me a thing. I learned from watching, and processing info how they tolerated their treatments and how quickly they could crash. Now that I work in the acute setting at several different hospitals, I don’t know my patients as well, but in the hospitals it is a one on one situation, so even without knowing my patients, I can usually keep a handle on things. You are your best advocate! You are awesome and inspiring to take your free time and use it to help others.

    • DevonTexas says:

      Much thanks for the support and encouragement.

      And I agree with you… most good techs don’t need to wait until the cramps start. They know from the yawning, blood pressure drop and such that a patient is nearing the limit. I’ve had that kind of tech and it’s really helpful because, as a patient, we are often too caught up on the moment to realize what’s going on!

      Yout patients are lucky to have you. Thanks for reading and commenting. I just learned some more!

      Devon

  5. debbzdays says:

    I don’t know about the area you live in, but I completely feel you should shop around and not feel as if your current clinic is your only option. 🙂 Hugs!

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