New to kidney failure

Hi, I've had CKF for several years and I've just been monitored every six months and had functionality between 25 and 30%. I'm now about to have a kidney removed, fuctionality has dropped to 23-21% but we are hoping that the removal of the kidney will only affect my functionality by about 20%. There is therefore a faint glimmer of hope that I may not be starting dialysis immediately and / or that I may still have PD as an option. But I have some questions that I'm hoping experienced people on dialysis can help me with:

1. Engergy levels - this concerns me. I love working and I need to continue to work. How much energy do you really still have whilst on dialysis? I'm a very motivated and upbeat person and I'm struggling to image not being like this.

2. I'm told that if you feel ok, you can go as low as 10% functionality before starting dialysis. I know this is a "how long is a piece of string" type question but what positive experiences do people have where functionality is dropping below 20%?

3. PD - what's the diet really like? Can I still enjoy the odd glass of wine?!

4. Travel - it is easy to travel whilst on CPD?

Thanks in advance for any feedback :)

4 Replies

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  • I bumped along at about 13% function for best part of 5 years feeling OK but in reality was very tired very quickly. My function dropped to 9% and I immediately felt like a sack of poo and couldnt do anything, feeling itchy, nauseous, extreme fatigue - like the worst flu but without a temperature or runny nose.

    I started dialysis nearly 3 months ago and after initial couple of sessions where I was still uuraemic and had some post dialysis vomiting, I have felt fantastic, I'm still working - around the three four hourly sessions, I've even done some overseas business trips and just had a short holiday - mind planning for dialysis whilst travelling is a headache - it can be done and works well. Staff at dialysis centre will help you with whats needed there.

    Yes its inconvenient being tied up three times a week for half a day but the benefits in improved energy etc are excellent. Obviously I cant comment on how long the feel good factor lasts but I suspect there is always an element of postive mental attitude in these things.

    Hope that helps your worries

  • That really helps. I saw my surgeon yesterday who told me that "existance on dialysis is terrible" which has really set me back quite a bit mentally. This is just what I needed to hear, thank you so much!

  • 1 Energy levels. I have been on APD for 5 years but it's only in last year I have felt low energy levels starting when I changed where I was being treated. Previously I was given regularly iron infusion but the Trust I am in rations them against the advice of NICE in it it's latest publication.

    2 Functionality. We have a friend that got some strange bloods so they sent her for a scan only to find she had been born with one kidney and that kidney was only functioning at 25% She is not on dialysis but controlling it with strict diet.

    3 Diet. You get a hit of up to 900 calories from the dialysis fluids so obvious either you cut back on some foods or get fat. I never miss my glass of Australian Chardonnay with my evening meal and I drink Becks Blue alcohol free beer, it's quite good and has very few calories.

    4 Travel. There I can't help but I am sure there are many who can and most hospitals have a dedicated person to arrange it for you but I have never used it.

    Get you catheter fitted but stay off dialysis until it really is necessary.

  • I can refer u to my book. free and on line.

    but this gives u an idea

    lulu.com/shop/mick-osulliva...

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