hi everyone.

Hope everyone is ok. I am needing a little advise please if anyone can help?

I am back at the hospital tomorrow to see my consultant for my monthly check up, my GFR is now 9% was 11% 4 weeks ago, was just wondering what I should expect to happen tomorrow?

also at the beginning of may I had my AV fistula fitted but new pretty much straight away that it had failed as the surgeon said my vein had collapsed.. now just waiting for the 19th june to come to see the surgeon again and get another date. has anyone had it done under general as I had the worst time ever with the local....really don't think I could do it all again with local to be honest.

1 last mum is a compatible donor for transplant, I understand things can still go wrong so was just wondering do I still stay on the deceased list until my mum is 100% compatible or do they take you off as soon as you have someone come up that suits your needs?

sorry for all the questions...I have tried to google and writing on the forum via my phone but kept saying there was an error! google wasn't any help either.

thank you in advance.

love to you all x

15 Replies

  • Hello, as far as the list is concerned, they don't take u off until the transplant is a success. Wish u and your mum well.

  • Thank you 😊 😊

  • Just to review your blood results I would think. You can't move forward because of your fistula. Some people have a catheter, usually referred to as a line. I didn't start dialysis until 5% but I had a fistula made a year before. I think they will keep you on the list. Let us know how you get on. Hope your feeling ok. Rob

  • Thank you very much 😊

  • Hi laura

    Firstly, you will stay on the list until you've been successfully transplanted.

    Secondly, regarding your appointment, what will happen will depend on your latest bloods. If the consultant decides you need dialysis, a line will be put into either your neck or more commonly, the chest wall. This should last until you have a working fistula or graft. Try not to worry too much and keep us posted x

  • Thank you. Hope you are ok and well xxxx

  • And thirdly 😁 I have had 3 fistulas, the current one is 17 years old! Only one (the first ) was done under local and wasn't a pleasant experience. The latter two were both under general. X

  • Fingers crossed. 😊 thank you xxx

  • Hi

    I got to 8% and as I was told that would be my dialysis time, I felt worried straight away as I hadn't got my fistula sorted at that time but needn't had worried as I didn't dialysis until I was 7% some months later.. ... I think it depends how well you are and what your blood results are....

    I had 2 operations for an av fistula.....the first was not good as I could feel it happening. It was very painful despite the local anaesthetic..... this fistula failed so had to have another one further up my arm. Like you I was really worried the second time and told the surgeon my worries....he said I shouldn't feel pain so would monitor it carefully ..... it was a much better operation and not painful like the first..... they can always give you more anaesthetic so do say how you feel, and don't suffer in silence.. ....

    All the best,


  • Hi Laura

    It sounds like your having a rough time at the moment and that the unknown is all a bit scary.

    Take the positives your mum is a match which is fantastic news and hopefully she has gone through all the tests and they can start planning a date for you to have a transplant and prevent you needing dialysis which I really hope does happen.

    I saw the vascular doctor two weeks ago and it was found I don't have a good cephaloc vein so I am having to have two operations. I am having thr first one on Friday under local on the brachiocephalic vein and if that matures in 6 weeks I will have the second under General. She wasn't hopefully hence the two stage as the second part is a pretty big op I've been told.

    I'm sure the vascular team have a plan for you, so try not to worry easier said than done I know.

    You will stay on the list until the transplant is successful.

    I hope all works out with your mum, and that the vascular team sort you out with a working fistula soon.

    Keep us posted.


  • I've been to see my consultant today and my last renal doctor ( both totally amazing people). My old doctor wants me to look into starting epo injections? Why do I need to look into it? Surely if I need it I would have it. If I don't I won't need it?? Surely?!

    My current consultant says with being at 9% now and it drops again in 2 weeks I will be in for the dialysis line 😪 and the AV done after so there done pretty much together.

    Fair to say I'm s******g it!!


  • Hi Laura

    I have had Epo Injections for a year now as my HB was so low, which is not good for kidney patient's. It's easy to inject yourself either in your leg or tummy once a week.

    Did they not say what your haemogoblin level was? Maybe they were asking how you felt about injecting or if you had a family member that could do it for you as I remembered you saying you don't like injections.

    The injections have definitely helped with my fluid retention as there is more red blood cells for the body to carry the fluid around and I definitely have more energy even with a renal function of 7% and no dialysis yet. 1st stage fistula on Friday.

    Stay positive and keep talking to people. Can't believe I've just told you to stay positive as it's the one thing I hate people saying it to me that have no idea of the emotional roller coaster your on.

    Take care

    Charlene x

  • Hey lovely. Thank you for your reply my HB is 113?? What is it meant to be? No doctor said someone would come and do it for me? I haven't a clue.

    Do the injections hurt? Could I really jab myself?! I don't think I could. It's not really sunk in yet. But every time I think about stuff it does get to me quite abit. Thank you so much for your help and advise.

    Take care xxx

  • 113 is pretty good mine was 56. They like it around 130 so yours isn't bad. The reason it's important is that your kidney isn't producing erythropoietin hence the name Epo. You need this hormone to produce bone marrow which then produces red blood cells if that makes sense.

    Injecting yourself is straight forward honest. You just pinch some skin together and then inject then run the skin. It's ok it doesn't hurt and if you do it yourself you have control. The Epo nurse (mines called Maxine and lovely) will take monthly bloods to begin with then 8 weekly, and a company delivers the injections to your house which need storing in a fridge. You will be fine injecting yourself.

    The Epo Injections helped me I had 2 stone of fluid overload this time last year and was admitted to hospital because the fluid was on my lungs and around my heart and with such a low hb it wasn't good. I found such a benefit from it.

    Are journeys are so similar and both facing dialysis shortly. I hope my local works on Friday as from what you've said and others you've all had problems.

    You can cope with injecting yourself have confidences in your own ability you are made of tough stuff as your coping with kidney disease and doing well

    Take care


  • This has helped so much. Thank you 😘good luck for Friday. Will you let me know how you get on please. Easier said than done but you will be fine. Will soon be over and done with.

    No the epo doesn't sound that bad does it. I think it's just the though of me having control of the needle. I hen someone else does it they do it when they are ready don't they. I don't think I'll have the urge to be ready lol.

    Thank you so very much. You have helped me no end xxxx

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