Creatinine Advice please

[JOJOSMITH123]

My 78 year old mother was diagnosed stage 5 CKD in November after a pre op...Her BP was sky high and told her kidneys were barely functioning. She was in hospital for a week and started on various medications. Her gfr became worse whilst in hospital. I was worried sick as she is my rock. Anyway she has absolutely no symptoms other than feeling cold. Consultation appointment was dreadful..He said yr too old for a transplant, we won't take a biopsy as you'll probably bleed out and u need to be thinking about imminent dialysis. Her gfr was 15%..Anyway we left shell shocked with no advice other than get yr BP down to 130/70..She has been on a strict diet since and has now been told her bloods have stabalised..although her creatinine is still a little high. Any advice on lowering it would be appreciated. I am going to ensure she stays away from dialysis for as long as she can..Oh and I think your all absolutely fantastic and this forum has kept me sane through Christmas..I wish you all good health 😀

[Bunkin]

Hello, I too am stage 5. I recently began taking a supplement called Chitosan. It's purpose is to lower creatinine which it did for me. Also helps with lowering bp, which it did for me. Hope this helps you and your mom. You're in my prayers. God can do anything!

[JOJOSMITH123 in reply to Bunkin]

Thank you Bunkin..she's started camomile tea today and I'm going to order chitosan..Good luck and God bless you too!!!..😘

[Bunkin in reply to JOJOSMITH123]

Nettle tea is also good! I drink 1-2 cups a day

[newbie1956]

JOJOSMITH123, Your Mom is blessed to have you in her corner. Being stable and having her creatinin a little high is improvement and sounds promising. Wish I could answer your questions but seems her diet is working. Of course, we worry, but take care of yourself too.

I appreciate how you describe your precious Mom. A "rock", indeed ! Hugs

[JOJOSMITH123 in reply to newbie1956]

Aww thanks for your kind words newbie1956. You only get one mum, and mine is the best. I wish I had half her strength. She is trying so hard, bless her and sticking to her diet. She loves fish and chips and refuses to have them now..even as treat. I've brought her some camomile tea today as I've read this can lower your creatinine..I'll also look at chitosan...I wish you all the best on your journey..😘

[sylla123]

Get another opinion .. I don't know which country you are in ? UK ? .. All cases are different ... My husband's immune system was attacking his kidneys ,, so a transplant was out ,, as it would have attacked the transplant one .. but he was diagnosed 2003 and the docs kept him good for 11years without dialysis ... he did have a biopsy ,, and was OK , you just have to lie still after for about 12 hours ... In March he will have now been on Dialysis for 3 years, he hates it ! but the nurses and drivers that take him there are all "angels" .. While he was waiting for his fistula to be ready for dialysis , he got an infection through his emergency line , and it has been down hill ever since ,, as the infection went straight into his spine Discitis ,, and the complications are many .. he is 78 years old , and before all this he was so fit , now every day is a struggle ..

I did actually give up on this site as I was getting nowhere trying to find info from anyone with discitis experience .. and we were not happy with the orthopaedic surgeon he was with .. so we went private to a top neurosurgeon in Cambridge .. He was just lovely and very honest .. he could have done an OP on my husband but he said it was too risky . and he could not say he would be out of pain ,plus it involved 4 to5 nuts , bolts ,screws .. but he said to have water physio .. (he could have done the OP costing us a fortune with no result ) we did the physio route and he was getting on just fine , it was lovely to see him improving and swimming , what he loves ......but then had a fall , fracturing his shoulder , pelvis and hip .. this was 6 months ago .. and he is still in pain .. It is heart breaking !

[JOJOSMITH123 in reply to sylla123]

Oh dear Sylla 123, sounds like your poor husband is really going through it. Amazing that the docs kept him going for 11 years without dialysis. You put so much trust in doctors and really your health and future well being is in their hands. I appreciate that they need to get the facts outs there but I think having a good bedside manner goes a long way. If we see the same consultant as last time and he shows no positivity towards my mum, especially after all her effort...I will be asking to see someone else. My mom wouldn't put herself through a transplant anyway. I hope she can stay away from dialysis for a while yet. She would opt for the PD at home I think?. I'm sorry to here yr husband is struggling with all the additional complications. It dosnt feel fair sometimes and although it must be so hard for the patient it must be heart breaking for loved ones watching the suffering and pain. I know I wud struggle with that. I hope he finds some comfort soon and perhaps gets to at least swim again. Stay strong...😘

[phillen]

The advice unless told by a dietitian is pretty much the same as a "normal person" normal healthy diet cut out salt keep a healthy weight no smoking etc be wary of any herbal stuff they can damage kidneys further my husband is the one on dialysis we were lucky his unit have very good dietitians & he regularly saw the renal pharmacist she said dont take anything that you havnt passed by them or the gp ie paracetamol only ok but not ibuprofen! your mum may stay steady now for a number of years as she is my husband did PD for over 5 years HD since nearly 2 years you quickly get used to it all & learn to live your life around it hopefully she will stave it off for many years to come he is 62 but some people he dialysis with are 88 & 86 & still lead fairly active lives wishing your mum loads of luck xxx

[JOJOSMITH123]

Thanks for your reply phillen. I'm so glad I found this site. I was so upset when she was first diagnosed before christmas. I'm alot more positive about it and the lovely people on this site. We had a renal information day last week and the dialysis when explained is alot less frightening, especially the PD. I'm sure I'll be a kidney expert by the end of the year. She is tea totally, never smoked and hates taking meds of any sort. She obviously has to now. She is on amitriptyline for carpal tunnel so hopefully when she had the op she can stop taking those. I wish you and your husband a happy and healthy future..😁