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Hi all new here. I was given the news that my egfr was 54% in Oct 16 since then it's been on the decrease with 2 increase but not remarkable ones. Today's visits for results were 25% I'm truly shocked although I'm in stage 4 it's such a bug decline in 15 months is it me? I hate hate hate the thought of dialysis i 've only just overcome my blood fear only one doctor can take it now after 39 years on this earth and I really couldn't cope with blood pumping round my body on show for 4 hours at a time 😓Sal

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I was on home peritoneal dialysis overnight for about 7 years and found it OK

But I kept getting peritonitis so was put on HD. I already had a fistula put in proactively so it was an easy change and the PD catheter was removed.

Thing to remember apart from a transplant, that once you kidneys fail completely you are about 3 weeks from death without dialysis so I developed a positive approach to it and made it into a social occasion.

Chat to the taxi driver going in, people in waiting room both coming and going and then the nurses and reverse when finished. Was difficult at first to be positive but I just kept reminding myself of the alternative.

Wish you well on your journey.

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Hi Sal!

I've been on hemodialysis for about a year and a half now. The way I cope is very similar to Fred - I meet and greet other patients in the waiting room with smiles and jokes. Even the grumpy ones kind of light up when I come in! I made it a point to learn everything I could about the dialysis process, that helped me to cope with the needles and the stress I felt at the beginning. Now I use a numbing cream an hour before they put the needles in so I really can't feel it most of the time. You don't have to look at the machine all the time - it is next to you. We have individual TVs to look at with remote controls and I always bring a book or magazine to read in case the TV is boring. People also bring laptops or smartphones, crossword puzzles or Sudoku, drawing materials, one girl brings her guitar and sings. It's up to you how you pass the time. Some even sleep through it (you can ask for Benadryl to help you sleep). Another thing they use to calm you is oxygen. Just remember that you are not alone in feeling scared - the staff is used to that and can help you a lot just by sitting and talking with you and giving you helpful suggestions. A nurse once told me to think of dialysis as my part-time job,a way to go get my blood cleaned. You kind of have to teach yourself to think positive, you know? Take care, I'll be thinking about you!

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Hello Sal,

I started on PD but had to stop after I had peritonitis, pd worked well for me.

Started heamo last August and like the others if you have a regular time slot you can at least chat with people you know.

I used to take in newspaper/iPad and that soon filled the time.

I have been doing home heamo since September and although for 5 times a week it is for 3hourscat a time and I believe they’ve outcomes are better.

Started nocturnal dialysis, every other night for 6-7 hours and gives me total freedom in the daytime and I feel so good.

The long term outcomes are also much better.

My machine is”portable” so can take it on holiday, but of a faff but is manageable if longer than a weekend.

Planning a trip to Oz next year, uk has a reciprocal agreement with Oz so as long as I organise in advance I can continue my dialysis ( would be the normal 3x4hours) rather than my nocturnal.

All those having to have dialysis it is not the “life sentence “ that many perceive it to be.

I am 71,and still work full time and leave a full and busy life, be positive and get on with living.

Philip

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