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GFR 5% but 3 weeks until fistula ready for dialysis.

Posted , 5 users are following.

susannah74731
susannah74731

Hi, my consultant's told me I may need a temporary line in my neck next week to get started on dialysis while waiting for my fistula to develop. The renal nurses I've talked to previously have all told me that it's an unpleasant procedure and I'm getting quite upset at the thought of it. Has anyone had this done and can you tell me what the procedure involves? Thanks.

0 likes, 10 replies

10 Replies

  • jon20501
    jon20501 susannah74731

    Posted

    Hi Susannah

    Firstly, sorry to hear about the news. Like you, I find out 4 weeks ago I had 5% gfr. Two days ago I underwent my first dialysis sesh.

    i had a temporary put in Thursday just gone (yesterday) I opted for my upper thigh just by the groin as I didn't want it in my neck. Perhaps if you're comfortable with it being there that's an option? 

    The procedure was painless and done via local aneasthetic. Then dialysis as much as I hated the idea initially made me feel so much better even my face now looks healthier and I've perked up. 

    i just seem to accept it more and more as the days pass. 

  • jon20501
    jon20501 susannah74731

    Posted

    Ps: I'm 37 Male always been healthy and athletic. I still can't believe this is now my life but hey.

    • susannah74731
      susannah74731 jon20501

      Posted

      Hi Jon

      Thanks for taking the time to reply, I'm sure you've got enough on your plate at the moment! I'm glad you're feeling better after dialysis.

      You've reassured me about the procedure, thankyou. I was getting myself a bit worked up about it. After having the fistula surgery and various scopes I can't say I'm eager to go through yet another procedure!

      I'm 41 and have never been really ill before so this is all new to me and such a shock.

      It's helpful to talk to someone in the same boat, because with the best will in the world, family and friends just don't know what this feels like. Thanks again, Susannah

  • helen54849
    helen54849 susannah74731

    Posted

    Hi,

    Fistly I cannot believe that health professional scared you in such a way, how on earth would they know its not nice, they have never been through it!. My dialysis nurses always used to ask me what things felt like so they could at least try and understand.  They never told me how things felt. I had a GFR of 9% when I started dialysis and even though I knew it was coming at some point it was still a shock when it actually happened.  I was on dialysis for nearly two years (I did peritoneal dialysis, as I don't like people faffing with me and I did this myself at home) and you get used to it as time passes like eating your breakfast.  You will feel better too that is a bonus.  Last Thursday I had my live doner transplant and I am pleased to say I am doing really well my creatinine is 98 was 400 and my GFR is 54% already.  I had a line in my neck as part of that operation and its not so bad at all.  The worst bit was having it taken out as no anasthetic for that bit.  You will get there don't worry, like you say family and friends mean well but they don't really have any idea.  This forum is really useful and you will pick up so good advice, people are not medically trained but they have been through it or are going through it and sometimes that is better.  Take care x

    • susannah74731
      susannah74731 helen54849

      Posted

      Hi Helen

      It's good to hear you're doing so well after your transplant, it reminds me that there's light at the end of the tunnel!

      At first I didn't see the point of joining a forum, but this has definitely made me feel a bit more positive about things.

      Thank you, Susannah

    • john85166
      john85166 helen54849

      Posted

      Helen, so glad all is well with you. Creatinine at 98 sounds wonderful. Hope the immune suppressants arent too bad. Are you really pleased with the outcome?

      John

    • helen54849
      helen54849 john85166

      Posted

      Hi,

      I have been lucky with the drugs I don't seem to have any nasty side effects.  Have had a bit of a blip but that was caused by a nurse putting up one of my immune drugs incorrectly, it made my creatinine go up and I told them what it was but they wouldn't listen.  Even when all my other bloods were fine my HB has gone up by its self, everything else fa even had a scan which didn't show anything.  Wanted me to go in urgently for steriods in case of rejection even though no symptoms of this and a biopsy.  Then sent me home as no beds!! not that urgent then.  They wouldn't note on my records my concerns over the increase and my thoughts but I have kept my own notes.  Went back the next day 2hour round trip for the 6th time this week to be told they were not going to book me in as they wanted to do a blood test first.  My immune drug level should be 7 and it was 10 way too high at risk of being poisoned consultnat said go back to original dose of immune drugs way too high.  So it was exactly what I had said but they wouldn't listen to me.  Very cross and I will be letting them know when I go back next week.  Will also not be increasing any meds until instructed by a consultant.  It alsways gets my goat as they contradict themselves "come in if you feel unwell you could be rejecting" then another one "there are no symptons with rejection" its laughable really I know me better than anyone and I would never risk my lovely friends kidney if I felt anything was wrong I would be straight there.  Sorry for ranting I have had to fight to be listened to my whole life I don't argue unless I am 100% I am right. only been one dose and creatinine dropping all ready.  Apart from that I feel better than I have in years.  If I go into the kitchen my husband is there at my shoulder "what are you doing" he wont let me do anything bless him I really am lucky to have such a lovely man.  Hopefully now its onwards and upwards it really is a roller coaster at the moment.

    • john85166
      john85166 helen54849

      Posted

      I'm with you Helen. Sending my best wishes. I know how you must feel with you wonderful friends kidney. So precious. Its the same everywhere with health staff failing to keep or correctly read the clinical notes. You keep fighting. I'm planning to go thru with it in a couple of years, hopefully, hence my keen interest. You sound like a good person. Good luck. I'll keep in touch. xx

    • helen54849
      helen54849 john85166

      Posted

      Thank you John if you want honesty about the process let me know as they dont tell you what it is like honestly, I would of felt better if they had just after but it is ok and not so bad.  It is a lot different from dialysis I am only two weeks in really and feel better than I have in years and I can cough, sneeze and stand up straight now lol.  Just let me know if you need anything and I will do my best xx
  • shazarules
    shazarules susannah74731

    Posted

    Sorry to hear your news, but welcome to the dialysis club. You will be able to get to chat to so many people around the world. I am now on my 3rd line , they do give you a local injection first before they insert the line. I found it was sore for a few days afterwards. When they use it fordialysis you don't feel anything. Good luck in this new part of this journey in your life.

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