Surviving Healthcare At The UHN

A patient's inside view of the UHN

The truth about dialysis

The truth is dialysis is not a death sentence.

The truth is dialysis is not a stopgap temporary treatment until one gets a kidney. Even people who get a kidney can end back up on dialysis,so think of transplants as a stopgap temporary treatment between dialysis

The truth is no one modality is better than the others. Sometimes one modality suits a patient better than another…and some modalities are unsuitable for others. Some times people need to switch modalities. That doesn’t mean any one is better or not,just that everybody is different and so are their treatments… the modality a person is on is the modality of dialysis that saves that person’s life,regardless of anybody’s opinion of the modality.

The truth about dialysis is there is no one foolproof access point and not everybody qualifies for every type. Every type of access can get clogged up or infected.No type of access is clot-proof or 100% infection-proof.Just because you can’t have one or another type doesn’t mean you’re any worse off. The access you have is the one that provides your life-saving treatment. Lesson: no matter what type of access,keep it as safe as you can, as long as you can.

The truth is dialysis is a life-saving treatment. More correctly,it is a life-saving ,CHRONIC, treatment. This,coupled with the fact that it requires machines to deliver it, makes it unique even among other chronic treatments. Dialysis is for your life.

The truth about dialysis is what you make it. Dialysis is about your responsibility to yourself. You owe it to yourself to make the best out of dialysis,to recognise it as the treatment that keeps you alive, to make sure you get the best care and that you give yourself the best care. If youy choose to look at your dialysis as a curse and a misery to be endured until you get that magical transplant (as we all hope we will),then dialysis will be just that,misery. If you look at dialysis as the treatment that keeps you alive but choose to be ignorant about the why’s and the how’s,chances are nobody else cares,either. Dialysis is not a plug-‘er-in,let-‘er-go treatment. You are the one who knows your body and mind best,YOU are the one who needs to be proactive about your treatment and make sure you receive the right care.

The truth is dialysis is not supposed to make you feel sick. It is not normal to feel ill,to hurt or otherwise feel unwell and it’s certainly not normal if it is all the time. It is sometimes unavoidable but almost always means there is something wrong with your treatment. There are always reasons for feeling unwell on dialysis and you must make sure that the reason is found so it can be prevented. “It’s just dialysis” is the wrong answer.

The truth about dialysis is that it’s not a treatment unto itself. It is part of a set of treatments just as your nephrologist is a part of your team of healthcare providers. Every treatment is affected by the other treatments. Every specialist on your team needs to work together. The reason for needing dialysis can stem from a complex  set of issues just as the side-effects of dialysis span another range of issues. It is important to know and understand your underlying issues & your side-effect issues and it is very important to see the right specialist for every issue.  That’s why we have specialists,so utilize them.

The truth is dialysis IS stressful. It is a chronic life-long treatment and such comes with its own special stress. This is normal. However,if at any point the stress becomes too much or you start to have other symptoms of chronic stress,such as anxiety or depression,while it’s still normal (remember side-effects of dialysis?),it’s time to seek advice or help from another member of your team of healthcare professionals. This is nothing to be ashamed of,stress gets to the best of us,chronic stress even more so and treating the symptoms of it so we can feel better is truly in our best interest. Not dealing with it can actually make your physical health worse. The care of a good psychiatrist or therapist can be a great asset in keeping your health.

The truth about dialysis is that you can look at it any way you want,you can feel about it any way you want,but guess what: without it you die so you might as well make the best out of it because the alternative is no life at all.

The ultimate truth about dialysis: it’s about you.

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5 thoughts on “The truth about dialysis

  1. Well done! Good points! Thanks.

  2. Reblogged this on DevonTexas and commented:
    Here are some very simple, straight-forward thoughts on dialysis that I’d like to pass along from another blogger. Enjoy.

  3. Pingback: Excellent blog written by a another blogger who does dialysis. « Mike2Kal

  4. Maybe you are happy with your dialysis treatment but my mother certainly isn’t! She’s been doing dialysis for 6 1/2 years and she’s 85 years old. I can’t even begin to explain all of the roadblocks she has encountered with her nephro doctors, regular doctors, as well as the dialysis center she has been going to. The red tape is unbelieveable, the attitude of the doctors and nurses is very negative. My mother NEVER feels good after dialysis. It takes her nearly 24 hours to recover from her four hour treatments. She goes three days a week (M-W-F). So between times, she’s struggling to feel better. She does NOT do the renal diet. She’s seen too many people die utilizing that diet. She eats regular food but in moderation. She limits her fluid intake to two cups a day, including what is cooked with. She is so dry most of the time that it doesn’t take much for her to start coughing. She chokes on pretty much everything, including water! She has been told by the nurses at the center that she is at the end of her life. But if that were true, she wouldn’t still be on dialysis after all this time. She’s discussed issues with the manager of the center but nothing ever comes of it. When she has vomited while on dialysis, the nurses don’t bother to help clean her up. Instead, they tell her she has to stay on the machine until her treatment is finished. And that it’s probably her fault that she got sick. That her vomiting is her just desserts for having done a supposedly wrong thing! She has encountered so much disrespect from the medical profession, that she is almost tempted to stop dialysis altogether. She is depressed because she should never have ended up with ESRF in the first place. Her kidneys were damage, due to a gallbladder surgery she had had twenty years ago. Her gallbladder had to be chipped out as it had calcified. As a result, there was nerve damage and a cutoff of blood flow to her kidneys and pancreas (that’s why she’s diabetic). She needed the surgery to save her life but the end result has left her diabetic and with ESRF, and she’s bitter about it. Because of her conditions, she has no interest in socializing with people. If she were to see a mental health professional, they would be prescribing pills for her to take to feel “happy”. The last thing she wants to be is in a happy zone without any sense of reality. So enough with the patient being 100% in control of their health because that is not always the case.

    • Perhaps if you would read the rest of the blog you would realize what this blog is about. In fact,I encourage you to do so. This post (and blog) are not about ‘positive attitude’ or being happy about dialysis. Your mother’s issues echo many of the issues my friend faced during his initial years on dialysis,mostly due to a complete lack of education & dearth of information provided to patients. It took a lot of research on our part to find solutions to them & it involved finding out which specialist to go to for help when because nobody cared & even acquiring new skills; whatever it was,it was always put down to ‘oh,well,that’s normal on dialysis’. This post was born to rile against the generalities one gets bombarded with, how this or that modality is so great/so horrible,the dialysis-bad/transplant-great spiel,the you-MUST-get-a-fistula-or-you-will-die-a-horrible-death-from-infection drama, all the while never letting on that there is no cure & there is no fits-one-fits-all treatment. The patient IS 100% in control of their health such as it is,including dealing with chronic conditions such as ESRD & juvenile diabetes as & if they arise,it’s the healthCARE drs don’t want them to have control over & it still behooves every patient to fight the best they can for themselves,because that being the other point of the post,nobody else will do it for you,least of all the professionals.

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