13% kidney function. Whats next

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Hi all, I have PKD and just got word my kidney function is 13%. I "feel" normal, but i know the symptoms can creep up on you. I do feel tired, sometimes get feet cramps, and occasionally itchy/restless legs. Im looking for some info on how to relieve the symptoms for the above. Im male  and 45

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  • Posted

    Hello,

    I have CKD and have had very severe foot and leg cramps.  My consultant prescribed Quinine Sulphate which has worked extremely well.  It is banned in the USA because it can cause quite a severe reaction but I have been fine with it for several years and it has completely banished the cramps.  I also have restless legs but have not found any remedy for that.  Let me know if you find one!  Good Luck.

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  • Posted

    Hi,

    Firstly glad you feel ok still, you will not start dialysis until you decide that you have symptoms and that they are getting too much for you.  When I occasionally get restless leg I drink tonic water and that works for me we are all different but it is worth a try first.  Have you had work up for the doner list yet, you are usually placed on that when your GFR is 20% and you are normally asked about the type of dialysis you want at this point as both types require surgery and a time to heal before you start (dialysis can be done by other means urgently if need be so don't worry).  You should also be asked if you have anyone willing to be a live doner at this point (you still go on the list even if you have a live doner until all the tests are done and you have a transplant date). I would research the two different types of dialysis and ask to visit your renal unit so you can ask the people that do haemo questions to see if it suits your lifestyle, they like you to do PD (peritoneal dialysis) where possible, this is what I do.  I started at about 9% and have been doing it for nearly two years.  I am only young, a little bit younger than you and as I can do it my self at home at night time and have no restrictions (fluid and food) it doesn't interfere with my life, I can work full time, exercise and look after my family so works well for me.  I went to the unit too see the haemo patients and decided 3 times a week in hospital for 4 hours a time wasn't for me (after a while you can do haemo at home once trained).  Like you I was ok unti; I got to about 9% then I was in bed for 7.30pm each night and I couldn't even look at food never mind eat it as it made me sick, so I hope you carry on as you are for agae yet. The work up for the list consists of lots of blood tests (which I am sure you are used to lol), a chest xray, a heart scan, an ECG and you have to go on a bike in the hospital with a mask on your face to test your lung function so not too bad. We started our live doner work up May 2014 it is supposed to take 6 months however due to the state of the NHS it took 2 1/2 years and we had the go ahead and so we will have our transplant on Thursday.  I have the most amazing best friend who really is saving my life.  Please keep us posted on how you get along and I hope you continue to feel well.  If I can give you more information on PD to help you decide please let me know, I am happy to share my experience. x 

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    • Posted

      Thanks for the info helen,  I really hope youre procedure goes well.  Ive had discussions about which type of dialysis im going to go for, but i havent made my mind up. I sway from bloods to bags on a regular basis as i believe both have pros and cons. My brother is currently going through checks for live donor, i had 4 people who matched me and he was chosen to procede with checks. So far i think he has had ecg and scans for kidney size and function, hesz currently running at a kidney function of 124% so looking good(i teach maths and continually go on about not having more than 100%), but well above the base line norm suits us both. We were told it'd be 6 months, but more like a year so heres hoping its not 2 1/2 years.  Ill keep you updated, please do the same

       

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    • Posted

      Hi,

      I am with you on the 124% thing lol.  They will do a projection to see what your brother kidney function is whan he is 85.  He is coming a long with the tests.  He will have a dye injected to see how his kidneys process things next then in a bit more dye and two different scans to check the size of the blood vessels, they will also check which kidney is best to take and see how many (its the afternoon sorry get tired in the afternoon) I can;t think of the word so I will go will how many tails come off the kidneys as some people have one at the top and some have another at the bottom. Sorry about the description I forget words in the afternoon all CKD related hopefully will get better after Thursday. Hopefully all is well with your brother.  I couldn't have a family member as they said my mum is too old and my brother is insulin dependent my husband was a match but my youngest is only 5 and isn't like the idea of me going away to to take both parents away for a period seemed cruel and so my friends all stepped in and here we are today.  I thought that we would both go to surgery together but learnt in our pre op this is not the case, she will go first and when she comes back I will go hers will be about 4 hours (she will have key hole) mine about 2 hours as i am a skinny so better apparently and mine is open surgery.  I want them to take a picture so I can see I am really interested (a bit odd I know).  As soon as I am done I will let you know nothing scary I promise just constructive feedback that will help x

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    • Posted

      Hello Helen,

      I do hope your transplant goes well. I have followed your posts on this forum and you are a truly brave and inspirational person. I'm A Brit through and through so don't usually say things like that!  I'll be thinking of you.

      Lyn

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    • Posted

      Hi Helen, i read that you forget words... i too have started this, but didnt realise it was down to my poor function(gfr16) . Just how bad does it get? Im already very worried about it. Also i have protien in my urine and have read this is very bad for my heart. Can you shed any light on this please...thanks..... Andy
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    • Posted

      Hi,

      I wouldn't worry about it too much it is more when I get tired it happens, someone can say something to me and I have to ask them 3 times one after the other what did you say again, we laugh about it and so do my bosses, colleague, family and friends. Its just a tireness thing it doesn't happen all the time.  Try not to worry.  Protein leakage is all part of CKD I am affraid nothing we can do to stop it.

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    • Posted

      Hi Helen, its so reassuring to hear that you have dialysis and feel well.

      My mom is on her second session of dialysis at hospital, she was really poorly and had to start instant dialysis the weekend. The problem is she feels so ill after the dialysis, and has been bedridden. She is dizzy and can't stand. As well usual symptoms, sickness, tiredness etc. I just wondered if you were offer any advice as to when she may start to feel the benefit of dialysis.

      I an extremely worried, she has malnutrition and is dehydrated because of the sickness.

      Best wishes

      Lesley x

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    • Posted

      Hi,

      I think your Mum will more than likely being having haemo dialysis which is different to what I do.  Heamo is known to cause dizyness even passing out as the hospital may be taking too much fluid off (this will be trial and error to start nothing they are doing wrong) Ask them if they can adjust the machine to take less fluid off, that should help with the dizzy spells.  I started to feel a bit better after about 4 weeks of dialysis after I had an iron infusion and EPO.  Everyone is different and remember older people respond less well and slower to treatment, also you need to take into account any other health conditions there may be (if there are any).  She should start to feel the benefit in a few weeks, also if she is on haemo there are strict fluid restrictions so if she is thirsty try and see if she can suck on an ice cube that may help.  Good luck x

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    • Posted

      Thank you Helen. I will chat with the nurse to find out. She did mention about taking fluid. Its so helpful to talk to others that have had similar experiences.

      Best wishes

      Lesley x

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    • Posted

      Hi

      My name is Dawn . My gfr is currently 13 . I too forget what people have said to me almost straight away sometimes . I'm pleased that it's a symptom and I'm not losing the plot . 😄

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    • Posted

      Aw no my lovely you are not loosing the plot its the CKD, it didn't get better on dialysis but once I had my transplant I could remember things without having to put everything in my phone calendar to remind me!!! I still put appointments that are away off but can remember them before the reminder comes up.  Its not fun is it.  I got to the point where I couldn't remember the names of every day things and it was like a game of sherads me describing what you use it for and huuby trying to guess what the hell I was on about smile I laugh at myself a lot I find this helps x

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    • Posted

      Thanks Helen .

      Yes I laugh about it too . I try not to take the illness too seriously at all really . My mum went through it , was on dialysis for 6 years then had a very successful transplant . She never let it bother her and I'm determined to be the same . 

      😄

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    • Posted

      Hi Helen, not sure if you are following this thread still. I enjoyed reading your input and  conversation. Glad you went through transplant with a good out come. I am at 13 % renal function and worried, but reading your attitude is refreshing.

       

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