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CKD and Dialysis

Posted , 3 users are following.

trab14
trab14

Just curious as to why there is no forum on dialysis when there are so many people with End Stage KIdney Disease (ESRD/CKD4). I'm in the US where our medical lingo and acronyms are considerably different from the UK, so forgive me if I don't get it right. Home dialysis methods and machines are rapidly being perfected but information about ESRD/CKD4 is not keeping pace. Furthermore, at least in the US, the companies that run the clinics and manufacture the machines and supplies are very reluctant to divulge information and hide behind the " patiet's confidentialitiy" rules to avoid giving information. I'm referring to corporations like Fresenius and Baxter and Davita. The end result is a tradgic lack of vital information.

For example, every time I ask questions about the performance of my Fresenius cycler, the answer I get is always the same: "Everybody is different so I/we can't answer that."

0 likes, 11 replies

11 Replies

  • matt66
    matt66 trab14

    Posted

    Maybe there's an admin we can ask. I'll look into it later as I'm about to go on dialysis now and there's no network or reception in there.😡
    • trab14
      trab14 matt66

      Posted

      From the sounds of it, you're going to a hemo clinic. I did that for a year before going on home PD. They had wifi and I coiuld use a laptop but they wouldn't let me type with needles in my arm. That was all the motivation I needed to get out of there any way I could.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey trab14

    Posted

    Good point, trab.  Perhaps the administrator of the forum will pick up your query and reply.  If not, worth sending them an enquiry.
    • matt66
      matt66 MrsO-UK_Surrey

      Posted

      I put a request on the "suggest a new idea" section, asking if they could create a group for Dialysis as opposed to having to post in the general kidney problems. If you can find the post (under the contact / feedback section), please hit the vote button on it to boost the interest in it!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey matt66

      Posted

      Matt, well done!  Unable to find the section to vote at the moment. Perhaps the moderator will kindly post a link for voting?  Otherwise I'll have a search around later when I have more time.
  • Emis_Moderator
    Emis_Moderator trab14

    Posted

    Hi all,

    We cannot have a separate group for every topic and I have actually spent a lot of time trying to rationalise the forums by merging similar groups. We used to have over 3 000 groups which have been cut down to roughly 400. The problem with having very specific groups in a site like this is they do not get used. By having the general groups of Kidney Failure and Kidney Problems more users are likely to see the discussion and join in and you can post in either or both groups. We will be changing things so rather than posting the same discussion twice you can post it once but assign it to more than one group so all replies/discussion will be in the same thread but the discussion will be in 2 places for example.

    If you want to discuss dialysis specifically then make the title of any discussion clear as this one is. This will also help with searching. What I can do is add more titles to the Kidney Failure group such as Renal Dialysis, Dialysis - Kidney so these appear in the A-Z lists.

    I have removed the idea from the feedback site as that is more for ideas for the site generally like functionality etc. Any suggestions about naming of or addition of groups names etc can be sent to me directly.

    Regards,

    Alan

  • trab14
    trab14

    Posted

    3000 groups is  a wee bit much . . .
    • trab14
      trab14

      Posted

      While I undderstand that you can't have a group for every possible topic, I wouild think you'd make your decisions based on need and interest. I could be wrong but there are a LOT of people on dialysis. OTOH in the states there are many such forums but they have few participants which leads me to the question of whether folks with dead kidneys are so satisfied and have so few issues that they're  (1) just not interested, (2) don't have computers, (3) are computer illiterate, (4) can't type or (5) just don't care.

      Frankly, I'm perplexed by this situation. Any ideas?

  • trab14
    trab14

    Posted

    What do you consider to be the least nasty side effect of the meds you've tried? I've  used perhaps a dozen different ones but found that most had no side effects. Perhaps you are particularly intolerant of these type of drungs as most have relatively minor effects for most users. IF that's the case no one can advise you, not even your Doc so you'll just have to keep experimenting until you hopefully find one that suits you.

    My problem with them was that many simply didn't work properly and fortunately I had a smart Doc who just kept giving me different ones to try. Even then, the ones that work do so only work for a time and then its on to something else, often something that didn't work previously but now does. Go figure!

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