Help I'm exhausted!!

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Hi everyone, I have suffered with Chronic Kidney Desease since I was a child but my kidney function has recently dropped to 13% and I now have CKD stage 5 and am awaiting tests/consultations to be put on the transplant list. Anyway my condition has only recently began effecting me physically and I'm really begining to struggle with the tiredness. I find it very difficult to get out of bed and finding every small day to day activity exhausting and wondered if anyone had any natural remedies to help me over come this? I am currently on a phosphate free diet and obviously am not allowed caffeine etc so any tips or advice would be greatly appreciated. Thanks in advance smile 

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  • Posted

    Hi,

    I wouldn't take anything that you have not disscussed with your doctor and deffinatley not alternative therapies, they can interfere with medication you ae already on for example blood pressure medictaion making it ineffective therefore speeding up your kidney failure as poorly kidneys don't like high bp.  You mention transplant has there been any discussions regarding dialysis as yet as that would be the next step in reality.  even if you have a live doner the tests on them still take for ever anyway if you dont you could be on the transplant list for at least 2 years.  You are in the worst bit at the moment (I have just come through this bit being end stage now) I was put on dyalysis at around 9% what you will experience now is extreme tiredness, even when you have been to sleep and wake up the next day you will feel like you have had no sleep, I felt achey like I had perminant flu without the cold and when I did get a cold it always turned into a chest infection and made my already kidney function worse.  Even making a cup of tea is exhausting.  Talks of transplant and dialysis were mentioned at 20% for me and i was told that it would be in 18months however i told them it would be before then and they chose to ignore me (what would i know its only my own self!) anyway I lasted 6 months before I got to 9%. What I will promise use is yes you are at the horrible bit and I am affraid you just need to suck it up for just a bit longer but when you start dialysis give it 3 weeks and you WILL feel much better and much more like your old self if you can remember those days.  I had iron and EPO and after a month was still awake at 9 at night and in work and people commented on how much better I looked (people said I looked that grey they were scared I was going to die) so just hang in there it will be better soon I promise you will be able to sit down at various points in the day without falling asleep (not a good look in work!) take care let me know how you get on, i would start (if you haven't already) researching dialysis and pick which one may suit you and don't worry if you don't get on with one you can chnage, let me know if you need any further advice

    take care

    x

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    • Posted

      hi Helen, I am currently waiting surgical consultant for the catheter or fistula options of dialysis and other tests etc, I believe I'll be starting dialysis in the next few months. It's reassuring to hear I will feel better after dialysis begins as it's something I'm not keen on starting and have always said I don't want it until I need it. I Have regular intravenous irons to battle my on going aneamia but haven't had it for a while as my condition is currently stable (and has been since June!) I just wanted any advice that is safe for my kidneys to battle this on going tiredness! Having a toddler, busy job and sometimes hectic social life can mean I can't keep up and ofcourse would like to x
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  • Posted

    Hi Rochelle

    I am sorry to hear of your long term problem but I was a little surprised too to find of you being a little unsure of all the types of treatment that may be available to you as you have had CKD since a child. Your doctor or consultant should at least have given you all the advise necessary for ways of handling your condition.

    My partners father has CKD with a constant high creatinine level of around 550 and gfr around 12 to15, yet with the medication he has received in the past two and a half years he has come a long way in improving his condition, I assume by slowing it down to a level where he is comfortable. I cannot tell you of all the medication that he is on as I do not deal with that directly but I know that one of the medications that seems to have a helping affect is bicarbonate of soda every day but this is given in a prescribed dosage by the doctor so you need to speak to your doctor if you are not already taking it to see why.

    I hope I have helped in some way and wish you a positive outcome with your condition.

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    • Posted

      Hi thank you for your reply, I am currently taking sodium bicarbonate which does help a little and I take one alfcalcidol but I just waned to see if anyone had any tried and tested solutions that won't damage my kidneys but will give me a little boost. I am sick of being tired all the time, I have physically demanding job and a busy 3 yr old daughter so you can imagine it's not an option to be tired lol. 
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  • Posted

    Hi Rochelle,

    I was in the same situation as you with a busy job and a four year old, there isn't anything you can take at the moment that is safe.  Due to my lifestyle I opted for PD which I do at night so everything else just stays the same in the daytime and I can still go to work let me know if you need any further information what PD is really like before you decide which type you want

    x

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