Am I normal?!

This may seem an odd question, but I'm wondering if anyone else has similar emotions to me.

I've progressed from Stage 2 to Stage 4 over the past 5 years. Is it normal to just want it to get to stage 5 so I can get real treatment?

Feel like I'm in limbo, waiting for the inevitable.

I know I should be hoping to get better, but I genuinely feel disappointed if my egfr hasn't decreased at my check ups.

I know this isn't a healthy mindset, and am curious if anyone else has similar thoughts?

15 Replies

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  • my husband felt the same! like your in Limbo try to feel positive dialysis is no walk in the park!

    it's constant & continuous for the rest of your life (unless you have a transplant) & even then you have drugs & check ups! but your thoughts are perfectly normal try & enjoy what freedom you have left, what are they doing to try & stop you getting to stage 5? keeping blood pressure low etc

  • Hi. Kari0216

    i to feel this way sometimes i call my renal appointments wast a month because that is how it feels i go every month for bloods blood presure and a chat with the doc symptoms are changing all the time sickness itching no energy 23 pills a day egfr 18 and then its over for another month we all know what the outcome of this is and as the docs said to me on the last appointment you are in a state of limbo .So as far as i can tell we are in the same possision and it is quite a normal human reaction to want to progrees to the next stage.

    keep your chin up and enjoy what you have for now.

  • Hi Mels

    You spoken to a dietician about your itching , sounds like you need to lower your phosphate intake or make other changes in your diet to reduce the itching as it will also be affecting other things . I was like that in the state of limbo to , best is to make the most of it as dialysis is very tying and can be very draining at times , so make the most of the freedom .

  • Just make the most of your freedom , talk to your dietician to see if they can help put delay your dialysis as long as possible through diet , as once on dialysis apart from your restricted diet , you also have restricted fluids generally to roughly 1 litre per day which is hard to get used to. Then there is the tying and lack of freedom due to being on dialysis, as your tied to times can't travel as freely any more .

    So make the most of your free time and travel now if you want to.

  • I am at stage 5 now eGFR is 15 most of the time Im very lucky as I try to stay positive this is my 2nd transplant it has lasted for nearly 24yrs am hoping its got a bit more life yet. I do however have my down days and do feel like Im in limbo but I try and stay as fit as I can walk about 5 miles a day. I just try and enjoy my life even if it means I have to sleep every afternoon Its very hard I know but I dread dialysis.

  • Hi all im on a lo potasium diet and now put on the 1ltr per day fluid intake as im retaining alot of fluid very hard as i drink that amount to wash the meds down 4 times per day.not all in on go mind a litre during the course of the day. as for the itching i run in a 3/4day cycle 3 days itching only at night then a day or so without then the vomiting starts for a few days then back to itching and on we go.

  • Thanks to everyone for the replies - really appreciated.

    I will endeavour to enjoy the freedom I have now as I know the next stage will be worse.

    Best wishes to you all for a happy and healthy (as much as poss!) future xx

  • Hi Kari0216, like you I have gone from 2 to 4 in about the same period. I am currently so frustrated as I have been hovering on the edge of Stage 5 for 6 months now. Originally I was informed from my consultant that as soon as I hit 15% GfR I would need dialsys.... well I am there but still nothing.

    It is very frustrating, I am too ill to work yet not ill enough for anything else to be done!

  • Yeh I am still in good health even at 20% function so I'm not in a hurry for dialysis, but my brothers friend got fed up of feeling so terrible at about 18% so went private, he bought his own machine for PD and paid for set up and so on, the private doctors said that the NHS make you wait too long if you need it and you feel better than why wait. But it's all cost, the NHS must be struggling with us all! They also know its a big change to our lives and my nurse said use the time you have to enjoy yourself. Try not to worry about it and get on with your life, I work, ski, swim, water ski and scuba dive in summer, I will have to find ways to do this while on dialysis which will be a real pain but most things are possible.

  • Hi Kari0216. Yes - know exactly where you're coming from. I was told last June that my function had dropped to 15% and needed to think about dialysis/transplant. However, I don't feel ill - obviously have health issues but still working full time and trying to live life as normal. Fortunately one of my brothers is a perfect match for donation but we are still undergoing rigorous testing which has, so far, taken 8 long months. If anything should prevent him from donating I will need to consider dialysis but at what level you need this is based on you as an individual. Some people may need it at 15%, others don't even need it when they get to 8% - only you and your medical team can make that decision - one size does not fit all. So in answer to your question - yes you're completely normal - well as a renal patient anyway. To be honest its like having the sword of Damocles hanging over your head and not knowing when its going to fall. Part of me want to get the transplant over and done with, the other part dreads the whole process. Best of luck and try and stay positive.

  • I was in the same position as you, my reason for wanting to 'get things moving' was that I wanted to start a family and was discouraged from doing so, basically I was told to wait until after I'd had a transplant. I was told that I was about 5-ish years away from being put on a transplant list. At the time I was 34 years old and didn't want to wait for a transplant only to be too old to conceive! As it happens I fell pregnant around this time and now have a healthy daughter. I've been on dialysis since week 19 of my pregnancy and both myself and my daughter were at great risk in the weeks up to and after her birth. I'm still on dialysis 5 years later and given a choice I would rather not be, it's very restrictive in many ways, but I wouldn't ever have changed my decision to continue with the pregnancy, in hindsight it paid off but it might not have done.

    Sorry, I've strayed from the main matter. Before my pregnancy I had thoughts of stopping my tablets in order to make myself ill enough. I didn't do that and I know should have just been grateful that I wasn't desperate for a transplant or on dialysis, but it was very frustrating. It seemed pointless going to the 3 monthly appointment to wait for 2-4 hours then not even see the consultant your appointment was with and be told the same old thing. All that seems a long time ago now. I chose to go onto PD as it makes looking after my family easier. It's a very scary process but it has worked for me. There are restrictions but also ways around obstacles too if you plan carefully. Dialysis isn't much fun so don't rush into it and try to make the best of your life at the moment. When the time comes, choose a method of dialysis that suits your lifestyle, get back on here for advice from people actually doing it the different types, I wish this was around when I was making my decisions. I wish you the very best, sorry for waffling on!

  • Thanks for sharing your story. I'm 31 and have been told same - wait for transplant before try for family. But with no timeline for transplant it may be too late.

    Its a very difficult gamble to make, and I've found very little recognition from medical teams as to the seriousness of the choice women & their partners are faced with at this stage of life and the disease.

    I'm glad it worked out for you. My current feeling is I will adopt, but that may also be prohibited by the illness.

    For now, will continue with the 3 monthly cycle, and try to not wish time away!

    Best wishes to you & your family

  • Hi ive been having haemodialysis four years now its hard going, it never stops relentless I hate this illness it has hijacked my life hardest thing for me was getting used to heavy bleeds from time to time, I think if I don't get a transplant within another year im gonna go nuts its a real shit.

  • Good luck - hope a transplant is found for you asap x

  • this was good info. thanks to everyone.I guess we all continue the good fight.

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