I've joiuned the Haemo club

Hi

After 10 years of PD my peritonium membrane has given up. I am now a member of the HD club. Am suffering a few problems with the switch: constantly tired and have occasional chest pains which are keeping cardiologists from going bust (but not solving....).. They can be excruciating at times (usually early morning or late afternoon) and only careful deep breathing seems to help. I learn from another HD patient that this occurred to him and it feels like you are heading for expiry! Can take a few months to dissipate. Anyone else had these symptoms? Now my potassium is also high and I thought HD removed potassium better than PD.

5 Replies

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  • Hi Stephen I wish you all the best and I hope they can sort your problems ... My Husband was 11 years before he had Kidney failure , we knew it would happen one day ! His Potassium is high too ,, we try to deal with that with what eats , also he needs iron .... He was fine to begin with and was getting on fine , but then after a few months he got an infection through his emergency cannula , which fixed while he waited for his fistula to settle .. It is called Spondylodiscitis an infection in the spine and the pain unbearable so he is on morphine etc . it has been a night mare .. And Try as I will where are the experts that know about Discitis ?

    He gets panic attacks and gets very hot , may be the medication ? his renal team have been fantastic , but the Discitis team very lacking ;-(

    All the best to you

  • I'm not sure why I missed this reply..

    I too had Discitis It terrified me at the time (anything to do with the spine eh) especially when they started talking about invasive investigateion. Lots of MRI's etc

    I actually got, probably and infection through my buttonhole fistula..

    The infection was treated, and I still get back pain.. I recommend any exercise that promotes flexibly and support, such as swimming, tai chi etc..

    I agree there's little info about discitis out there!

  • Hi Jman I wrote to you before .. about the Spondylodiscitis ..

    I don't think that my husband has discitis now, but his back ache is unbearable .. so much so that he took an over dose of his pain meds .. He is OK and we have a really nice Psychiatrist visit now .. No one seems to know why this pain , it is not the same pain as the Discitis ... A week ago he had steroid injections in his spine , but so far they havn't done a thing .. What I discovered was that he was too long on the drug Fentanyl and was not monitored for 14 months , and what I read was one should be checked often on this drug , which is 100 time more potent than Morphine and 50 more than heroin .. So some one took their "eye of the ball " This drug can also "mess with mind" hence the over dose .. can also cause chest problems ,, hence his very bad loose cough ! Also the consultant told us as he has been in pain for so long it can confuse his mind / Brain to think he is in more pain than he is ! All quite alarming and I am angry at the lack of care he has had ! I have now found a hospital that specialises in the spine near by , and it has good reports .. it is private ,but they also take NHS patients . so I am waiting to hear from our GP !

  • HD does remove potassium, but only as much as the session and concentrate/dialysate allows for.

    Heamo is quite a crude treatment. Keeping the haemoglobin up may be the key to more energy (10 or above) but not above 13.. You need to discuss this with the doctors or anaemia/epo nurses.

    You may need to keep a food diary for a week or two to identify any high potassium foods, or drinks you may be consuming

    You may find some of the following publications useful

    Eating Well With Kidney Failure, a Practical Guide and Cookbook

    amzn.to/uoj87U

    Eating Well for Kidney Health, Expert Guidance and Delicious Recipes

    amzn.to/rYCcW2

    Eating Well, Living with Kidney Disease

    amzn.to/rEtgVb

    Truly Tasty, over 100 recipes created by Irelands Top Chefs for Adults Living with Kidney Disease

    amzn.to/va6Pln

    Food With Thought PDF Download or printed copy for £2.50 via the NKF

    kidney.org.uk/help/books/bo...

    Davita Recipes, an American website with many many recipes.

    davita.com/recipes/

  • Hi all

    Since my last post I have had a graft implanted into my arm to enable HD and then after a month of severe chest pains (on and off), which prevented me from lying flat in bed - I had to sleep upright in a chair, I had an angiogram and an emergency quadruple by-pass. It's over three months on and I am still having problems due to minor chest pains, chest congestion and very poor "durability" (I cannot walk more than 50m without a rest). I saw the cardiologist last week who was very pleased with my progress ! I am very despondent with the so-called medical professionals. Can anyone out there who have had similar surgery on HD tell me what to expect during recovery? I have been doing light exercise, but it takes a very long time (many hours) to get my breath back.

    Any comments and experiences will be much appreciated.