Hemodialysis testimonials sought (pros / cons)

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Hi all, I am currently on peritoneal dialysis and am seriously considering switching over to hemo.  I'm hoping to hear from others who are currently on hemo about your experiences - what's good about it, what's bad about it, what you absolutely hate about it (if anything), how long it takes, etc.  I am trying to gauge whether it will be more or less of a PITA than my current PD system, so please feel free to be candid.  I'm particularly keen to hear from those who have "crossed over" from PD to hemo - did it work better for you, what are the possible complications, what surprised you, what was more of a pain / less of a pain, etc.

Thanks to everyone in advance,

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  • Posted

    Hi Mike

    I started on hemodyalisis a couple of weeks ago. I've had seven sessions so far and I'm still getting used to it to be honest.

    The fistula surgery lasted about an hour and it wasn't painful due to the local anaesthetic but it was unpleasant. Having someone rummage around in your veins for that length of time isn't an experience I want to repeat!

    The fistula itself really surprised me. Nobody told me that it would be so powerful. Having this vein pulsing away in your arm constantly takes some getting used to. I couldn't stand it at first but now I'm ok with it, although I'm always conscious of it. Don't expect to use that arm for a few days afterwards while it's healing. It took me about a week to recover from that surgery.

    They started using my fistula when it was only three weeks old as I became very unwell and had to start dialysis before the minimum six weeks they recommend for the fistula to become strong enough. Because the vein was so new and soft it kept blowing and my arm ended up very bruised and swollen. Hopefully this wouldn't apply in your case because you would continue with PD until the vein is well developed.

    The process itself is ok but if you're squeamish about needles or blood I wouldn't recommend it. The needles they use aren't small and I have local anaesthetic injections before they start but I still find it a bit painful when the needles go in. However once I'm all hooked up the dialysis itself is fine, you don't really feel anything. Sitting still for four hours was harder than I thought it would be. I would recommend downloading some box sets to your iPad if you have one. They've told me that because my clearance levels are looking good, I may eventually be able to drop down to three hours per session or even drop a session per week.

    When they remove the needles it can take 10 minutes or so for me to stop bleeding afterwards and if the nurse doesn't apply enough pressure you get blood spurting out of your arm as I found out earlier this week!

    Time wise I would say factor in an extra couple of hours per session. I'm told to be at the unit for 12.30pm but today I'm still waiting for a machine to come free at 1.20pm. I won't start dialysis today before 1.40pm and will finish at about 6pm then I've got to get home. You can forget about using hospital transport as you can be waiting hours for it!

    Sorry to sound so negative but let's be honest, whatever option you choose it's going to be sh**t.

    Please just ask if there's anything else you want to know.

    Susannah

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    • Posted

      Thanks Susannah!  Your post contained some good information I was not previously aware of.  I thought the fistula had more of an "external" component so you weren't actually poking needles into something that would bleed or be painful.  Ouch.  I also didn't realize the blood would "whoosh" in and out of you quite so forcefully, but I guess that makes sense in order to clean it.  Do you think you'd be able to sleep during a dialysis session? I hear that some patients get set up at home with the hemo unit, and that is what I would be looking to do as well.  In fact, some hemo patients do it overnight every night I'm told!  Which means they would be able to sleep through it; so I guess you can get used to all this?

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    • Posted

      Hi Mike

      Yes most people seem to nod off during the session, although they are all elderly patients at my sessions. I'm 41 and personally find it hard to nap when there's so much going on in the unit, nurses taking people on and off, cleaning the machines etc. Headphones or ear plugs are helpful though.

      I watched a guy this week who is in training to do his own hemo at home. I get the impression that he's had hospital sessions for a long time so I'm not sure home hemo is something you'll be able to do straight away. I'll ask about it at my next session on Tuesday and let you know.

      Susannah

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    • Posted

      Hi Mike

      The dialysis nurse I spoke to yesterday told me that apparently there is no set time limit whereby a person must attend hospital dialysis prior to starting home hemo. The nurse was non-committal and just said everyone's different. He did say that they 'button hole' your arm first to make it easier for you to place the needles. This involves repeatedly using the same two needle entry points in your fistula so that they are marked and ready for you to use. The two needles you insert into the entry points are rounded at the end rather than pointed one's used at hospital. I suppose this is so there's less chance of you blowing the fistula by damaging the vein with the needle.

      Hope this info helps. I'd be interested to know what you feel the downsides are to PD.

      Susannah

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    • Posted

      Hi Susannah,

      To answer your question:  there are always downsides to any treatment, and I'm sure most of the downsides to PD resemble those for hemo:  treatment takes a long time; the need for constant sterilization; having to deal with boxes & boxes of supplies (home treatment); need for surgery; etc.  However, the downsides - let's call them "my challenges" - unique to PD are listed below.

      First, how PD works:  you get a catheter surgically installed in your belly.  The catheter is essentially a tube; the part of the tube "inside you" has holes in it to allow fluid in and out, while the part of the tube hanging "outside you" has a simple open/shut valve.  With PD, you connect a bag of fluid, open the valve on the catheter, and fill your belly with the fluid.  Then you leave the fluid in your belly for a period of time (minutes or hours) - it "pulls" excess water and toxins through the membrane of your peritoneum over time.  Finally you drain the fluid out and discard it.  That's the process => fill, dwell, drain; fill, dwell, drain.

      Ok, the "challenges":

      1)  Drain pinch:  when you conduct a "full drain" and pull all the solution out of your belly, some people will experience a pinching feeling in their gut when draining the final dregs.  It is uncomfortable at best, painful at worst.  Some people don't get it at all; others really feel it and it's uncomfortable.  Me, I feel it.

      2)  Positioning:  for me to get a full drain, I need to be sitting upright.  Problem is, PD occurs overnight while sleeping.  If I'm not awake during my final drain in the morning, I'll have 'dirty' fluid leftover inside me - which my body will then reabsorb over time.  This means I have to futz around with manually draining myself and re-filling.  Annoying.

      3)  Bowels:  you need to keep your bowels as clear as possible, otherwise the treatment isn't as effective and your drains become very slow.  The need to constantly keep the bowels clear "or else" can be a real challenge.

      4)  Catheter suction:  for me this is the granddaddy of all the issues:  sometimes - and I can never predict when - the "inside part" of the catheter sucks up against my insides during a drain.  This causes quite a bit of pain and discomfort, and also slows down the drain.  If it's particularly severe, and depending on how many of those little holes are sucked up against your insides, it could stop the drain altogether.  Having this happen once during the evening is bad enough - imagine being woken up nine times consecutively during the night, reliable as clockwork, because every time you drain, your insides are getting sucked against the drain tube...  Most nights it does not happen, but when it does, it's pretty miserable.

      There are other challenges like having to deal with alarms going off in the middle of the night by the PD machine, but those are usually a product of #2, 3, 4 above.  For me, #4 is the most most difficult challenge I deal with.

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    • Posted

      Hi,

      I am sorry you are having all this trouble with PD you can solve a lot of what your are going through by changing the settings slighty on your machine.  Also you having to sit up is wrong has no one offered you an xray to see if the tube has moved inside you?

      I had drain pain to start as I am skinny and the tube was forever getting stuck on my insides and I agree it is nasty like having a stitch that doesn't go away but I solved this by changing the settings.  What is your tidal % I had mine at 85% which meant that only 85% of the fluid was pulled at each drain therefore got rid of drain pain all together.  It also stops the sucking mostly of the tube getting stuck in the day time.  My tube moved up to my ribs and got stuck the hospital gave me an xray and said it would come down by itself and if not they could fix it.  I temp adjusted the machine and it fixed itself.  You don't sound like you are getting the right support from your team.

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  • Posted

    I was on hemodialysis for a considerable time before i got my transplant and now with an EGFR of 14, I find am seriously having to consider which path to choose.  

    For me, hemodialysis did not work particularly well the first time around.  

    I went from three sessions to four extended sessions every week and to be honest with you, i do not relish the thought of having to go through the process all over again.

    The most important thing to do is always to be aware of your own and weight and buy two sets of good quality bathroom scales.

    Its all very well going to the hospital and being weighed prior to a dialysis session but In my experience, if the scales they use are not accurate, too much fluid will be removed and the headaches which result are excruciating.  

    Apart from the actual dialysis needles which are unpleasant enough as they are,ceven worse is if you actually have a fistula "blow".  Although this is a rare occurance, this is when a dialysis needle does not go into the fistula smoothly but instead, ruptures it temporarily.  

    The evidence is immediate and the arm swells very rapidly and becomes engorged with blood internally   As i say, this is rare but i have had it happen twice and each time it took six weeks to even bend the arm and for the bruising and pain to subside.

    If self dialising always start your machine pump slowly and increase the pump up to speed. This reduces not only the stress on the heart but also any possible attacks of angina and/or the feeling of light headedness.  

    As suzannah has said, injections of anesthetic do help to reduce the initial needle pain  and i can assure you, you will not have any problems sleeping during a session.

    I used to find it really hard to stay awake.cheesygrin  

    The proceedure when you are actually on the machine is not painful, just awquard if you are sometimes trying to get comfortable and want to avoid the 'numb bum' sensation, so it really does help to always wear soft cotton trakkies and an old T-shirt...but nothing special because it can get messy if a needle slips out.

    Best

    John

     

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    • Posted

      Thanks very much for your response John; I'm sorry indeed to hear about your struggles.  May I ask how long you have lived with a replacement kidney, and what constitutes an expected 'lifespan' of a replacement kidney?

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  • Posted

    Hi Mike

    Not exactly glowing endorsements for hemo. I also thought that PD would limit your core muscle workouts.

    Have you made any decision yet.

    John

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    • Posted

      No decision yet, John.  I find the thought of hemo to be quite intimidating, although I know if I were to 'cross over' I would just have to deal with it.  I'm hoping to hear other people's experiences.

      PS.  PD does indeed limit core muscle workouts because when your belly is full of fluid, you risk a hernia if you overexert it.  That said, you can drain yourself out prior to going to the gym and then workout quite safely.  I myself have been doing this, and I regularly perform crunches to strengthen my abs.

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