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Thread: Dialysis choices

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    gilders's Avatar
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    Default Dialysis choices

    I thought I'd start a thread specifically for dialysis options. Hopefully this thread will become a good starting point for people at Stage 4 renal failure who need to begin to decide which dialysis is best for them.
    I have only had actual experience of dialysis for a few weeks, over 20 years ago, so most of the following info is what I have recently read, rather than what I have experienced. So please feel free to correct me if anything is incorrect.


    When choosing dialysis there are 2 main options - Haemo and Peritoneal.
    Beyond that the next choice is - at home or in clinic/hospital.
    Beyond that it is - frequency and the choice of nocturnal or day time.


    There is a mass of information regarding the various options, so I will try to pick out some main points, but will try to answer any specific questions I don't cover.


    "Which is best?" is likely to be one of the first questions, but there is no one-fits-all answer. The correct dialysis should not only be the one that prolongs life, but also lets you live, socialise, work, etc.
    No current dialysis matches the performance of a living donor transplant. The best dialysis is that which mimics a kidney as close as possible. Considering a healthy kidney works quietly behind the scenes 24/7, the best dialysis (for prolonging life) would be if you were attached to the dialysis machine 24/7.
    This is obviously not practical. Therefore the best "realistic" dialysis is dialysis that happens frequently, for many hours.
    For this reason nocturnal dialysis, every night (or most nights) is usually a good choice.


    Pro and cons


    Heamodialysis at clinic/hospital.
    Pros - Some patients only feel safe when professionally trained nurses deal with dialysis.
    - If space is limited at home, there's no issue
    - Home is always home and a place to relax. Your home hasn't become a full time medical facility
    - Get to meet other dialysis patients
    - Usually get 4 days a week off dialysis completely (in reality this isn't good for kidneys though)


    Cons - Slower, more frequent dialysis has the best results. Hospital/clinic dialysis is the opposite. You are likely to get 3x4hrs/week. Therefore out of a 168hr week, your body only has the equivalent of 12 hours kidney function.
    - Food and fluid intake is restricted (often quite severely)
    - Usually need extra meds to combat the inefficiency of this method
    - With travelling, parking, waiting and preparation for dialysis, waiting to be "unpluged", etc, a 4 hours dialysis can take up most of the day.


    Peritoneal, Continuous Ambulatory Peritoneal Dialysis (CAPD)
    Pros - Done at home, or wherever there's a clean environment, so no trips and waiting at clinic/hospital.
    - The "exchange" is done 4-5 times a day, every day so results are good (less pressure on heart)
    - Fluid and diet is either not restricted or only mildly
    - No machines involved, which makes travel more accessible.
    Cons - 4-5 times/day (approx 40 mins), every day, is a big commitment
    - Peritonitis (infection) is a bit of a risk
    - Some people don't like having tubes hanging out of their stomach
    - The Peritoneal lining in your stomach is unlikely to manage this type of dialysis permanently (usually 3 years)


    Peritoneal, Automated Peritoneal Dialysis (APD)
    Pros - Done through the night, so you can get on with life during the day, every day, without using dialysis
    - Done at home, or wherever there's a clean enviroment, so no trips and waiting at clinic/hospital.
    - Done most nights, for long period, so results are good (less pressure on heart)
    - Fluid and diet is either not restricted or only mildly
    - Machine is quite small and portable
    Cons - May make sleep hard to achieve, especially the first few weeks.
    - Peritonitis (infection) is a bit of a risk
    - Some people don't like having tubes hanging out of their stomach
    - The Peritoneal lining in your stomach is unlikely to manage this type of dialysis permanently (usually 3 years)


    Haemodialysis at home.
    Pros - Can be done more frequently and during the night, giving best results and least strain on heart
    - No travelling and waiting at hospital/clinic
    - If you dialyse during night, you have every day to yourself
    - Not restricted on fluid/diet if you have frequent dialysis
    Cons - Using needles and high-tech machines at home can be daunting for some.
    - Some machines need to be plumbed-in, so may not be suitable for all homes


    I am due a home visit soon to discuss my options. If they have any relevant info, I shall add it to this thread.
    vdub, Titus3:2, Alysia and 2 others like this.
    Diagnosed April 1995

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    Thank you, Pete, for such generosity & kindness to share all these info with us. Not an easy decision to make... please update us what you decide and why. I keep you in my prayers ♡
    Alysia
    dx 2008


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    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
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    Thanks Alysia.
    Haemodialysis through the night, 6 times per week seems to be the most effective. But that is so long as your fistula works well. I often have problems with blood tests and cannula, so I'm not sure.
    I will definitely choose to dialyse at home and for long/frequent periods. So APD through the night, may be best for me. It is also fairly portable, which is important due to my many hospital appointments that are a long distance from home (i.e. I spend the night before close, or in the hospital grounds).
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    Diagnosed April 1995

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    Thanks for sharing, Pete. Sounds like you have found the better way for you. I hope the fistulla will cooperate. Please update us how is it going...
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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    Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14%
    15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

    I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.
    Diagnosed April 1995

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    Sad to hear the news, Pete. Hope all goes well going forward.
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    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

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    Quote Originally Posted by gilders View Post
    Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14%
    15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

    I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.
    Sorry to hear that.
    gilders likes this.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Not good, Pete.... Where will you have to go for dialysis? Near by?
    gilders likes this.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Psoriatic Arthritis - dx May12, Hypoparathyroidism - dx Jul15, Subglottic Stenosis - dx Jan16, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    Quote Originally Posted by gilders View Post
    Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14%
    15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

    I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.
    I am sorry, Pete. I keep you in my daily prayers & I ask my beautiful dr. Phil to help you from his good place in the presence of God ♡

    Question, which also reflects my wish for you: you said that your wg is active now. Is it possible that once you will beat it to remission, the kidney's functions will get better ?
    You have being on dialysis 20 years ago but you have recovered from that need. Is it possible again ? And if this is the issue, then the wg treatment is the most critical thing, isnt it ? What treatment are you on ?

    Sorry if I ask too much or stupid questions... trying to think about more possibilities.....
    Pete and gilders like this.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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    Quote Originally Posted by Alysia View Post
    I am sorry, Pete. I keep you in my daily prayers & I ask my beautiful dr. Phil to help you from his good place in the presence of God ♡

    Question, which also reflects my wish for you: you said that your wg is active now. Is it possible that once you will beat it to remission, the kidney's functions will get better ?
    You have being on dialysis 20 years ago but you have recovered from that need. Is it possible again ? And if this is the issue, then the wg treatment is the most critical thing, isnt it ? What treatment are you on ?

    Sorry if I ask too much or stupid questions... trying to think about more possibilities.....
    GREAT NEWS!
    Blood test showed eGFR back up to 18%.
    Obviously I'm still borderline dialysis, but I'm on the right side of the border!
    Alysia you never ask stupid or too many questions and I'm always happy to respond!
    Thank you for your prayers and thanks to Dr. Phil.
    My kidneys are suffering from chronic damage, so there will not be any function increase, beyond slight variations (probably up to 5% difference). I have noticed that after my previous W.G. relapses have gone into remission, kidneys continue to deteriorate. My specialist said that this was because once the active damage to the kidneys has stopped, scarring then begins. As you will see on a cut on your hand, scarring is larger than the original damage (cut), therefore kidney function will continue to deteriorate until scarring stops.
    From personal experience and from reports I've read, damage to kidneys from an acute attack of vasculitis can be reversed using dialysis, but not long term, repeated attacks like I have had.
    As for treatment, I'm on maintenance Rituximab (every 4 months) and a low dose (5mg) of Prednisolone, plus 11 other drugs.
    I've been in remission for 2 months, but need to stay that way for a further 10 months before transplant can be considered.

    vdub, my aim is to avoid dialysis and get the transplant done. Success rate is MUCH higher for patient who get a transplant before having to have dialysis.
    If that does not happen then I plan to have dialysis at home, but I will most likely need to begin treatment in hospital. Although most of my care is at an hospital 160 miles away, I still see a nephrologist in the next city to me (Bradford), so would be having dialysis in Bradford.

    As well as the usual problem with dialysis I have 2 problems that make it much riskier!
    Not only am I on warfarin, but I have platelet dysfunction. I was in hospital for 2 weeks last August with severe bleeding (Geoff came to visit me) and as I would prefer daily dialysis, needling myself everyday runs a high risk for severe bleeding.
    The other option is Peritoneal dialysis (through permanent catheter in stomach), but this method carries high infection risk, so isn't recommended for immunosuppressed patients.
    This is why I'm SO scarred of dialysis and need a transplant.

    Pete and drz, thanks for your concerns too.
    lesa and Alysia like this.
    Diagnosed April 1995

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