Advice please

[Jacqui_1966]

Hi all I have ckd stage4 my current egfr is 19. It has been as low as 17 I am tired all the time. I also have diabetes high blood pressure sleep apnoea and gallstones I feel pretty lethargic and sickly most of the time don't know if it is the ckd or a mixture of everything.....

[Philipjm]

Hi Jacques,

Cod is different for all who suffer.

My gfr went from 19 to 15 over a period of 2 years.I never really felt ill or tired .

At 15 went on the transplant list and had setbacks over the next two years, I ruptured my elegant quads and after surgery gfr down to 4. Recoved to 12ish but that took me of the transplant list for 6 Months.

Then I had a roughe dvt, off the list for 6 months, back on this time last year.

Y now I was feeling tired when I got home from work and often fell asleep for an hour.

Nov last year gfr down to 10 so had a PD catheta fitted and started capd in Jan this year, within two weeks of starting I felt so different and full of energy, I use my bike, walk a lot and generally feeling good.

Called for a transplant in Feb but it was a no go after 9 hours.

Then caught peritonitis, off the list for 6 weeks.

Now back to normal and hoping for a transplant in the near future.

There are ups and downs along the renal journey.

Support from my renal team is so good and their help and support will help you find your own way forward.

I am 70 this year and look fowward to enjoying every day.

Life for me is pretty much normal apart from the PD 4 times a day.

Still have a life and go on holiday and planning a trip to Sydney next year.

Thinking positive is so important.

Wishing you the best over the coming weeks

Philip

[Jacqui_1966 in reply to Philipjm]

Thanks for the reply. My egfr has decreased over last 3 years from 59 to as low as 17 it now is at 19, I have other issues so sometimes not sure if it's the ckd or not. It's the tiredness that is worst there has been no talk of dialysis yet so that's good. My renal consultant comes to a surgery near me but has said if next blood results cone back sane of less then I will see the team at my local renal unit in hospital which I believe means one step closer to the dialysis.

[rabbit01]

I have late stage 4 CKD too. My egfr is currently 16% and I get tired in the afternoon. I also feel sick which is normally after waking up and this lasts till about 10 or so in the morning. I have recently started to work from home most days as I was finding the commute to and from work too much and was feeling very rough.

[clem556]

Renal failure is not the end of the world, and the fear of dialysis is worse than dialysis its self.

I found starting dialysis is a game changer, but, it will make most if not all of your symptoms go away and you will feel better for it, guaranteed.

There will be things you will learn, which will help your situation, a change of diet and fluid control are the main things. You renal team will help you all the way. There are two main types of dialysis and these will be explained to you and the team will help you make the choice as to which is the best for you.

Once you are established on dialysis you will get to lead a better life than you currently are.

I wish you all the best.

I had kidney failure in 1990 and still going strong.

[Charlene_Coxhead]

Hi Jacqui

I am currently in stage 5 with gfr of 11% but still not on dialysis as managing things with fluid restriction and diuretic as my parents have come forward to be tested to be a donor. Unfortunately my mum wasn't a match but going forward as a paired donor as my dad was a match but found he has renal disease himself

Being tired, horrible taste in your mouth and feeling sick is very common.

Do you know what your hb level is? Mine went down to 67 and should be 130 so on weekly Epo Injections I do myself which has help with that tired feeling. Unfortunately I suffer from not being able to sleep.

I've learnt that you just need to listen to your body. Try and stay active and most of all stay positive. You will have good days and bad, and learn on your love ones when you need them, I definitely don't do that enough as I don't want them to worry or see how rough things do get.

Definitely ask about you hb and ferritin level as they may be low and can be sorted quite easily and stop you feeling so tired. Feeling tired is so draining so I hope you get the help you need.

All the best

Charlene