my partner has just been told he has 18% kidnly function left

He was at 40 % for ages and was told do not worry as long as it does not get worse we will monitor it and if it does we will see you again (this is the family GP) bout 2 years ago he was admitted to hospital with a very high blood pressure and about the same time his diabetes meds stopped working. took the GP a year to get him to refer us to the hospital and for a year now he has been on insulin with goo control. then this year his function dropped to 23 % and the GP said its time to see the hospital renal team but the time we got to hem he dropped to 18% and has been for 4 weeks.

more meds and a restrictive diet later we are living between 4 weekly appointments and blood tests.

I have been looking for forums and support groups so if any one knows any would be great for a link. also we are looking at the nightmare of asking for PIP as he can barely walk 40 yards without sitting down and I have to take him to and from work and to appointments. has anyone with ckd stage 4 got pip and how did you go about it. it seems to be a minefield

thanks for any info help tips and directions to otehr people

13 Replies

  • Firstly, it's sad that your husband's condition has deteriorated so quickly. It must be a shock, even though you perhaps knew it was on the horizon. Your life will feel taken over for a while I guess. I'm not really in the same position as yourselves, I still work and do get some benefit, it hasn't changed over to PIP yet. The forms are bewildering to the most intelligent of people. You will repeat yourself constantly. Just write everything. Worst case scenario. How far he can walk. What he can do for himself. Get a Dr or consultant you know well and trust to fill it the supporting information section. People like Citizens advice are usually out of their depth when dealing with renal patients in my experience.

    As for forums etc., I only discovered this one last week and it is by far the best. Avoid Facebook pages. There are probably people on here who have been in your situation who can give you very good advice. I have looked at other forums but not stuck with any.

    The next few months will be difficult for you both. I wish you well.

  • thanks for your reply. we have an appinment booked for citizens advice. may be we will go and fine summon else as well. the consultant does not rally have 're to help with forms. but will ask locally see whays around

  • Try the British Kindney Patient Association (BKPA). They have a helpline and they are fully up to date with all related problems, I have found them useful. Everything seems like a minefield but it will settle gradually. Small steps are best one problem at a time. Good luck

  • Sorry to hear that. How old is he and what treatment are they giving him for his late stage 4 CKD?.

  • he's 57 and on insulin for his diabetes was alreadynonnstatin doxazozin rampril but they switched it did to side effects. and couple others can't rmwmber which for high blood pressure. they have started him on a water tablet and we have to add a low potassium diet as well. next check is in 3 weeks.

    thank you all for your replies

  • I am a similar age and also have 18% left although I am not in as bad a way as your partner. I work full-time. I do get very tired and sometimes breathless. I hope that he can be stable at this level and even get better.

  • I also have stage four CKD and got knocked back for PIP twice, i sought representation from my local council and she said its very dificult to get PIP for kidney disease without actually being on dialysis and even then youre pushing it. I had a nightmare with it, 6 months of constant forms and nothing to show for it

  • Persever with pip again. I have got it, did a diary of a week how i coped and ive had between 8% and12% for the last two years since ihad my right kidney removed due to polycystic kidney disease in dec 2014. Good luck take each day at a time and listen to your body.

  • Sorry to hear your husband's condition is getting worse is the problem due to the diabetes, my mum has kidney problems but hers is managed by a weekly injection.

    im down to about 15% kidney function at the moment but not on dialysis yet, but mine has dropped within the last year due to a rare kidney problem, i have no underlying medical conditions, but due to my condition i will be going on dialysis but when i have no idea as they are trying a cocktail of drugs, we have though about calming for pip but have not done so we was thinking about try to clain for esa first as my partner is only just going back to work himself after being unemployed for the last 6 months and me not being well but because we were calming as a couple i could not get esa has anyone claimed this way?

  • I think controlling the two most important things, diabetes and blood pressure is a must. The advice of a very proficient nutritionist regarding the diet and life-style is also important. I ,sincerely, pray for your health.

  • I, sincerely, pray for your health.

  • I know it is a very worrieing time, you can ask to see a dietitian at the hospital who can tell you the best foods to aviod, I was on a low salt and potassium for years and I was able to avoid dialysis. I had kidney function of 6% and still no dialysis and still working. Which I know is not the normal. I had everything in place if I did need it. But my husband was giving up his kidney for me to have a better quality of life. We did a 3 way swap. That was 2 years ago and I've never felt better. Is this something you would consider for him. But which ever rout he goes down I wish him well.

  • thank ypu all for yoyr replies I saw the diatician at the hospital the same week thankfully so we could start with a diet straught away. we have not had the discussion yet with the hospital about transplant or dialysis. but have an appointment in 2 week'stime and depending on his bloods will depend what we discuss.

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