when will i have to start dilysis?

i 1st found out i have CKD in march 2012 when i had blood test i found out that my gfr was at 19% and since than it has slowly come down to where it is now 12% in july 2012.judging by this how long do you think it will b before i start dilysis? i have chosen PD but my doctor says that it is not time yet to install the catheter yet?,iv gt swollen ankles,legs,cant eat and cannot sleep at night but am really tired during the day.(i go to sleep 8am and get up at 6pm even than i still feel like sleeping.) i feel crap and useless my wife and kids dont understand why im like this they want me to get up early and spend time with them while i can but i just dont have the energy or will to do so.

plz help

15 Replies

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  • This really needs a proper clinical answer from a Nephrologist however, with the other symptoms you are having I would have thought that you need to start dialysis ASAP. I believe that commencement of dialysis is normally considered at around an eGFR of 15 - 20 dependent upon other symptoms like the ones you describe. My wife, who's kidney failure was a very gradual process (over a period of 40 + years) didn't start dialysing until her eGFR had dropped to 8 and even then her symptoms were nowhere near as bad as yours (mainly tiredness, breathlessness and itching with some ankle swelling). Your CKD is clearly developing rapidly into ESRF and,if I were in your position I would be demanding a second opinion.

  • hi mikeb thanx for your answer,

    my doctor said the same to me that i will start dialysis when i reach eGFR 8.i do hope that i won't need dialysis and that i can keep my eGFR at 12 or maybe it might increase abit! the reason why i say this is my family r hoping to giv me a kidney we r currently waiting for the results of the cross match.fingers crossed sum 1 will be a match.

  • Hi Ammo99

    I really do believe that you should talk to your consultant again now and tell him how things are with you. 12% is right on the edge and I am sure that dialysis will make you feel much better. It is a case of making your consultant understand how you feel. Don't wait, make an extra appointment

  • Hi ammo99,

    It is highly unlikely that your eGFR will increase and the "work up" tests for a potential donor can take some weeks to complete. You also need to be in a reasonably good condition too so starting dialysis now would help considerably in the meantime to give you a boost to face the rigours of a transplant. Dialysis is a daunting prospect I know but, from our experience, it isn't half a bad as you imagine and the difference it will make to how you feel could be dramatic. As you will hopefully be able to receive a kidney in the not too distant future I would have thought that temporary haemodialysis via a "permacath" connection is the right way forward. As the CEO states....make that appointment !

  • hi hw r u? i knw its been a few weeks since we last spoke,iv had some good news since than 1st my younger sister has been told she is a perfect match for live donation the cross match was perfect, and 2nd my last blood test results show egfr 15 which means it has gone up slightly from egfr 12 when we last spoke. Also i dont feel as bad as i did a few weeks ago ive just got itch,swelling and tiredness.Hopefully i can hang in their a bit longer without the need for dialysis.

  • Hi ammo99,

    Even if you are able get a match within your family, i am afraid you still may need dialysis as transplantation process is so lengthy. My saggetion is don't think transplant as a solution of your problem. Transplant is an another treatment just like dialysis. Study says, transplanted kidney serves avg of 10 years. So, for a CKD patient to live long, dialysis is must. So, face the reality, be strong and don't be afraid of dialysis....

  • thnx for your input.i knw transplant is not a cure but just another treatment option but the longer i can stay off dialysis the better for me.iv just found out last week that my little sister is a perfect match for live donation,so the process has now begun.i knw that it will take a long time weve been told that their are alot of tests involved for her and me but at least the adventure has begun!

  • Hi ammo99,

    Wonderful to hear that you may have the opportunity of a pre-emptive transplant from your younger sister. If cross matching has already been done then your sister is well on the way through the "work up" programme. This can be completed in a matter of weeks, depending on how quickly your transplant coordinator pushes the process. She will have to have a general medical, cardiogram, full GFR test and normally also a CAT scan (to check kidney size and arterial connections). You will also undergo a medical check toi make sure that you are healthy enough to undergo surgery. Then there will be the legal "stuff" involving a one to one interview with an independent assessor to ensure that there is coercion or money being paid. The last time I went through this process myself (for the second time) at Leicester it was all done in three visits. The increase in your eGFR you talk about may not be a real increase as it is only an estimate and test repeatability is not that good. Only a full GFR test involving injecting a radioactive tracer and checking bloods over a 4 hour period can produce an accurate number. Good luck, I sincerely hope that you will get your transplant as, if successful, it will change your life completely. Once transplanted there will be lots of pills and twice weekly visits to hospital for the first 6 months but its all worth it to get a functional kidney. Again, if it is successful, it is most certainly a cure as you will have a fully functional kidney operating 24/7.

  • im excited at the prospect of getting a new kidney but am also fearful at the same time, i keep thinking what if this what if that (you knw what i mean) after all she is my little sister and i dont want anything to go wrong also she hasn't even started her own family yet but transplant co-ordinator says she shudn't have problems in future if she wanted to start a family it just means they wud have to keep a closer eye on her during pregnancy,my sis knws all this but still wants to go ahead,she always jokes and says 'im never getting married,im gona stay at home with mum an dad'! actually she thinks this is all exciting and is enjoying the idea of being the one whose kidney i get! im not sure how i feel maybe i can hold out for a few more years at my current egfr 15.

  • The emotions you are going through at the moment are quite normal and just the same as my wife went through when her brother volunteered to be a donor back in 2007. Unfortunately, her pre-emptive transplant was unsuccessful but I know that her brother would do it all over again if he could. Her eGFR at that time was similar to yours (around 13/14) and that is about the perfect time for a pre-emptive transplant. It's unfortunate that your sister is not old enough to have married and had a baby but, as your coordinator says, she will still be able to have a family with careful monitoring, as her remaining kidney will most likely increase its function to compensate for the loss of one. Another point to consider is that if she had a baby, but needed a blood transfusion, the antibodies produced by her immune system might then make it impossible for her to donate an organ to you. Now is the best time !

    It is highly unlikely that you will be able to put off a transplant or dialysis as you are already at ESRF (end stage renal failure) for more than say a year depending on the rate of deterioration (my wife didn't commence dialysis at an eGFR of 8, which is quite exceptional). So, please take this wonderful offer of a normal life that you sister is presenting you with and try to push the negatives to the back of your mind. I'm sure that there are days when your sister may have some private nagging doubts herself but she clearly wants to do this as a completely unselfish action for someone she loves. She will have the opportunity to discuss her own thoughts in a private interview so,that, finally, if the transplant goes ahead, you can be assured that she is 100% sure about what she is doing.. Good luck and grab this opportunity with both hands.

  • Hi ammo99

    it is possible to have a transplant before dialysis - this is called a pre-emptive transplant. I hope members of your family prove to be a match. The record (as far as I know) for the longest surviving transplanted kidney is 42 years and the record for the longest surviving dialysis patient is (again, as far as I know) 35 years. Try to keep positive.

  • Hi, my husband had a fistuall fitted at the hospital's request when his RKF was 14% and when it had gone down to 9% they advised an immediate canulla be fitted and he's now been settled on CAPD for about six weeks with no problem. He says he doesn't notice feeling better but I notice that he does so much more, gardens, is back to work (3 days as he's 70) and looks so much better. He still gets tired but not the same kind of tired. I'd go back to the consultant and explain how you are feeling and that you'd like to be settled on dialysis asap! If he says no I'd get a second opinion as it's important to have some quality of life, particularly as you have a family. It may be that there are medical reasons why they are not getting you onto dialysis but if there are then they should be telling you why.

  • Sorry, have just seen about the transplant option. Good luck, hope that goes well.

  • my GFR is 19,i feel just like you,i feel for you,i could have a good nights sleep and still be tied, im awake three hours then im nodding of on sofa,its horrible i have know life in me,i have swollen face some times to,

  • hi thanx for ur post..

    i havent been on here for a few months so just to update:

    iv been on pd dialysis since christmas 2012 and its been ok im still tired but not as much these days. my sister has had all her workup tests done and i was due to have the transplant 21st May(couple of days ago) at QE hospital birmingham but 15 mins before my sister was due to go under the knife the docs discoverd my hemoglobin levels had dramaitcally dropped thus making it to dangerous to operate on me me an my sis were devastated as it was very emotional for both of us and the rest of the family the night bfor the op (tears an everything) but i suppose it was for the best. we r nw hoping to have it in 8wks time as long as my levels r all good, but hey at least we knw wat to expect as we have been thru the emotions!

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