Please help worried partner

My partner has just been told that they have 32% kidney function which has been declining over a time. She is to have a discussion over dialysis or transplant on Thursday and I'm worried sick. Can someone with kidney disease live a long life? She's only 20 now? I know I could ask the doctor myself but I don't want to upset her or seem ridiculous. Thanks so much, Hannah

11 Replies

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  • Hi Hannah, I am surprised that there is talk of dialysis or transplant at 32, I am 38 efgr or could be less now and I may be referred to a nephrologist but nothing else. Unless your partner has other issues... My husband is guided by me and I don't think he's unduly worried, I wish your partner well, she's lucky to have a caring partner. 

  • Don't worry. I have had Ckd for years and I'm 70. Good luck. By the way I have found it helpful not to have family fussing round me cause that would make me feel that I am ill. Just lots of love. Xx 

  • Hi, I'm 40 and have had a decline in kidney function for since My 30's I now have a function between efgr 12-14 I'm on the transplant list, I'm lucky I'm not on dialysis, im tired most of the time, but still manage to have a full time job, and when i get a bug/ill it takes a couple of weeks to recover. been on the transplant list since November and have already had a call from the hospital for a possible donor. It didn't work out but there is always a next time! I don't know your partners details, but when I was told my kidney function was getting poor, the hospital just wanted to give me the information, it takes a long time to Process, get your mind ready, the sooner you get the info the better, u can look at lifestyle changes etc, all is not lost, this is a good thing they are keeping an eye on her, good luck x

  • I agree with everyone else you can live a long life they don't normally put you forward for transplant until you get below 20%!! my husband has had kidney problems all his life he's 60 now & been on dialysis 5 years but he was in stage 3 for many years stable at that!! they will go on her bloods & she is under the best care now so don't worry a transplant is best but it is still a treatment not a cure but some transplants last many years a few over 40 these are people from when it was in its infancy! some don't last long some people i know have had more than 1 transplant & the second or third sometimes last longer lucky she has you to support her thats a wonderful thing in itself x

  • We are at year 10 with what started as an initial loss of function to 20% post op. 4 years after the first less we went on to peritoneal dialysis which was successful for 6 good years. You have to fight your corner as it is often quoted as expensive compared to transplant or Hemo dialysis.  Depends on the strength of your support team at the renal unit. Some are surgeon led and those alpha males can be destructive but you need an allied health professional nurse to explain the options. Everything will depend on your blood results.  When they start talking options you need to weight up against your personal circumstances.  If you are flexible and have the room then PD works, HD is restrictive but suits some, home Hemo is a long training schedule with varied results. Plan now and it will not be as bad as you think. You will survive this. 

  • I'm 20 too, I know what it's like to have a worried partner. My boyfriend gets very upset over the whole thing. 

    Please don't worry about dialysis and transplantation yet. I'm at 24% and my doctor won't talk about it till I hit 20% and I know I am not going on dialysis I'm going straight to transplant. You have a while to go. You don't hit kidney failure till eGFR 15 and even then I know people that aren't on dialysis at 8%. Different people cope in different ways. 

    I wish you all the luck :) 

  • If the decline is rapid, they may want to discuss it with you earlier.

    I'm 40 and started dialysing at the age of 5..  So.. I'm still alive.

    Also attended Uni, kept in school etc..:)

    You may find some of the medical info here useful:

    kidney.org.uk/help-and-info...

    Also write a list of any queries to take for the appointment, or have someone else with you to write down answers... 

  • Sorry to hear about your partner my daughter is 28 and has 13 percent function with no hope of dyalises or transplant due to other health problems and she is still healthy so hope yous get answers from your doctor x

  • Lots of helpful answers here. Please don't worry, like everyone above, I have been at 23% for 7 years now and feel great with no mention of dialysis or transplant either.  Maybe they are just talking to her to allay any fears she may have. xx

  • Going by experience after 3 years in Dialisys and 33 years after my transplant, I will say at her age,  Transplant is the World to belong to as now a,days they can skip Dialisys  ( Hell on Earth for someone young ) I was 18, but did not have the option back then, now a,days it is an option, of course depending on health issues wich complicate things,, Diabetes  and any issue like that, but if given the opportunity,  skip the Dialisys world if possible, the quality of life is not good, technically you belong to the machine at that point,she runs your life, real life or as close as normal will be transplant, wich preparation and coordination may take up to a year to prepare the recipient and get a live donor or to put someone in the waiting list if of a cadaver. Hope this helps,, Danny,Aka Merlin I Tampa Florida at your service 

  • Dear One,   eGFR below 15 may need dialysis or kidney transplant. As far as I know and what I have learnt from Internet, a proper diet regarding eating&drinking will help your partner a lot. I,sincerely, wish your partner a very quick recovery.

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