Stage 5 CKD and

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Found out this week that my GFR is now down to 14 and likely to drop further,  How long from entering Stage 5 will it be before I am wired up for dialysis?  Currently injecting with ESA for anaemia and have, yesterday, had a iron infusion.  Just looking for some advice from people who have gone down the long lonely road of kidney disease

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  • Posted

    Hi there 15 is pretty low and chances are you're in stage 5 just now. In my experience no professionals ever discuss what stage you're in. I was placed on dialysis at around 15 and had a fistula made before I started in Jan this year. I'm.sure it won't be much longer until you're advised you'll be going on dialysis

    Hope this helps

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  • Posted

    Hi not sure this will help but my mum's egfr is 19 but she is 72yrs , she is about to start inj for anaemia and there has been no mention of dialysis as yet. Still 3 monthly checks, apart from tiredness she is otherwise well.

    Her Drs say alot is age related so maybe you have a while to go if you are older.

    Jane

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  • Posted

    Hello,

    My GFR is not as low ( it is at 20%) as yours yet but like you, I'm injecting ESA weekly and have had an iron infusion.at the beginning of April and Vitamin B12 injections every 3 months. So far the one infusion has get me going and my HB and TSAT at acceptable levels and made me feel a lot better in myself. I think the "when" question is hard to answer as people seem to vary at to how quickly their disease progresses.  I'm 74 and have had CKD for about 15 years.  All my renal consultant wil say is that he expects I will have to have dialysis sooner or later and that when I get to a GFR of 18-20 I will be given the dialysis talk to enable me to make a decision about what kind I want.  I have read a lot about it as a way of familiarising myself slowly to the idea and found that that helps, as does talking to people on the forum who are on dialysis and managing pretty well.  You are right, it is a long and sometimes lonely road. Often people you know don't understand that you can't do things you used to be able to do with ease because you still look well. I hope that Helen will see your post and reply to you.  She is a shining example of someone who has gone through it all and emerged smiling and able to help others.

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  • Posted

    Hi oldqueen, sorry to hear of your kidney issues.  As to how long until dialysis, the question is:  it depends.  The most reliable answer is for you to plot your previous GFR results in a graph so you can observe the rate of loss over time, and then draw a best-fit line through the plots to estimate how long your kidneys have likely got before dialysis.  If it took 10 years to get from GFR 25 to GFR 14, it might imply you might have another year to go; OTOH if it took 6 months...  you get the idea.

    At GFR 14 you're getting very close to dialysis, I believe the threshold is typically GFR 12 and after that it's based upon symptoms.  For comparison, I started dialysis when my GFR hit 7 (boggles my mind).  My advice:  even if you are feeling relatively good at GFR 12, I suggest you don't wait until your symptoms get any worse and simply get started on dialysis.  I know I regretted waiting until my GFR hit 7 simply because the symptoms were really getting to me, and once I made the decision I had to be scheduled in for surgery (PD tube insertion), wait a month for it to heal, and then start dialysis...  Needless to say, that month was not fun.  I should have just gone ahead at GFR 10 or thereabouts.

    I hope that helps.  Wishing you the best,

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    • Posted

      Thanks for your reply Mike. Given the choice I think I'd go for dialysis now rather than wait.  The speed of decline is increasing.  I am typically tired, I've also had anaemia , iron insuffieceny and adrenal insufficiency. I'm seeing a doctor in the Advanced Kidney Clinic next week and its going to be the top of my list for discussion. 

      Thank you to the others for your sound words of advice.  If I may I will log here what happens in the future.  It might help me more to walk this road.  

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  • Posted

    My eGFR is 14-15%. My nephrologist has said that it's a judgement call when to start dialysis. He sometimes starts it with a higher eGFR to help with high potassium issues that haven't responded to other treatments.

    But he said that if his patients feel a lot better when he puts them on dialysis he waited too long. If, on the other hand, they feel no improvement he put them on to dialysis too early.

    He has some patients who are still feeling well with eGFR around 15. Otherd are not. So he doesn't have a definitive number for starting dialysis.

    I'm an advance planner so wish this was all a little more predictable; but it just doesn't seem to be.

    Don't know if this helps...

    Marj

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  • Posted

    Hello there. I was hovering at a GFR of around 12 for almost three years and suffered very few symptoms. I declined the transplant route and have also decided against dialysis, although my GFR now varies between 6 and 7. I have not been given anything like EPO and I seem to get through most quite well days by not thinking too much about the disease.

    I have to accept that things are beginning to go wrong and signs of uraemia are becoming more noticeable, especially in my swollen feet and my pruritis, but I am hoping and praying to get one more Christmas in before -- moving on!

    Try to keep positive and do as the doctors advise. Good luck and God's blessing to you!

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  • Posted

    Hi,

    The simple answer its up to you.  At 14% you and your neph should of had the conversation about the type of dialysis that you want to do then it all depends how you feel (I know you feel like poo already) I mean like physically can't go on and then they consider.  I was projected 18 months to two years in reality I shocked them all and lasted 7 months I was at 6% when they panicked and sent me for my catheter (I did PD). Talk to your neph if you haven't had the discussion already and do some research about which type you want to do and what will fit into your life best.  If you have any questions about PD which I did at night at home let me know HD I don't have personal experience as my opinion was I wasn't keen only my personal opinion though!

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