Just going into CKD stage 5 and need your advice please

[rabbit01]

I have been a steady 18 EGFR for the last 16 months and I had my latest blood test on Tuesday and I have dropped three more % points in the last two months which now takes me down to 15% EGFR and so just going into CKD stage 5. I don't have my next appointment with the nephrologist till end of December although presumably she will see my latest blood results. Do you think I should see if I can get the appointment with her brought forward or just leave things as they are? Aside from feeling tired I am generally well most of the time and still work full time. I really have no idea what to do (if anything) as I enter this stage so any advice will be most welcome.

[Celtic]

If it were me,I would check with the consultant before December. It's okay to have lengthy periods between appointments when the eGFR remains stable for a long time but I think I would want to check there isn't something going on to cause a sudden drop of 3 points just in case it is something that can be corrected - blood pressure, blood sugar etc. Very best wishes.

[rabbit01 in reply to Celtic]

Thanks very much for the good advice. I am seeing the GP tomorrow morning.

[dorri65]

Hi, after the last chat you were due for your check up, when I hadn't heard for a wee while I guessed something might have changed. Im sorry to read that you have moved to stage 5. Hopefully, someone at Stage 5. reads your message and is able to put your mind at rest. Although I would agree with reply from "Celtic". Take care, I will follow your progress.

Doreen (dorry65 )

[rabbit01 in reply to dorri65]

Thanks for writing back Doreen. The last time I saw the consultant was mid August and I was still at 17% although that was down 1% from the test before that. It was only after last weeks blood test that I was at an all time personal worst with 15%. I have had so many nice replies with sound information so it is really good to be part of this forum. Hope things are good with you.

[phillen]

This is the stage that they talk to you about dialysis options they will send for you if they think you are suddenly dropping a lot faster than they expect just try not to worry they may just ask for a repeat of bloods next month or 2 weeks time it all depends really

[rabbit01 in reply to phillen]

Thank you. I have been called to the GP tomorrow morning so I envisage the consultant has asked them to do another blood test. Thanks for the advice.

[phoenix45]

I moved home some 6 years ago. My new consultant advised monthly appointments and blood tests as my EGFR had been declining quite rapidly (50% down to 20% in about a year). My new results started to fluctuate and when I asked about this he said that results can vary by 1 – 2 %. It could be that your result was just such a fluctuation. I would certainly check that there are no other problems. I too get tired and no longer have the energy levels that I once had. I’m now retired – aged 71 – but try to stay active. I’ve been fortunate that I have stabilised around 18% EGFR and now have an estimated date for dialysis in 2045!

Best wishes.

[rabbit01 in reply to phoenix45]

Thanks for writing Yes I guess it could be just a fluctuation and I have been told before that there is a couple of % tolerance either way on the results but that said a year ago I was up to 21% from 18% at diagnosis which I put down to life style changes (cut out all salt etc) So to get down to 15% is quite a shock I hope you continue to stay at 18%.

[htpi1543 in reply to phoenix45]

Phoenix 45

I read your 3 years old post and a ray of hope emerged. I am in a similar situation with GFR of 19 and creatinine of 2.9, fatigue , little anemic. BP 130s In the morning and 140s in evening. Lost 20 lbs in 18 months. am 75, not diabetic, BMI 22.8, diet: no added salt, no dairy products, minimal processed food, 70% gluten free, etc. Plant based diet.

Mayo Clinic diagnosis in 2009 was IMN ( idiopathic membranous nephropathy)

Looking to keep away dialysis for 5 more years only. I have two nephrologist and a PCP and a Cardiologist but they do not make creative changes and keep the status quo. appointments 4 months interval. In the mean time GFR is depleting. I am thinking of doing Stem Cell treatment but lots of controversy.

Question: How did you do it?

Any input about diet will be highly appreciated.

Hope you are doing well

Thank you for your help

Regards

SAM

[phoenix45 in reply to htpi1543]

Hi Sam, I'm continuing to do well. I'll admit that I might not be the best person to give advice, all I can say is that it appears to work for me (but I know that my metabolism is not normal anyway - that's a long story with little relevance here). Three years on my eGFR is around 10%., still not on dialysis much to the amazement of my nephrologist. I have a bit of fatigue and am also slightly anemic. My BP varies quite substantially - depending on how long I have to recover after a steady 1 mile walk to the hospital. I just eat a normal diet - not missing anything out or reducing it, a light toasted breakfast with coffee and a main meal in the early evening (meat + 2 veg) - generally I try to maintain a moderately healthy lifestyle - I'm owned by a 3year old Springer Spaniel who demands a substantial amount of exercise and I take him out for several hours over the course of a day. I had to retire some nine years ago due to an accident in which I fractured a femur - making it difficult to continue in work.

In short,my style of life has not changed appreciably in the last 10 years - I moved to my current address to be nearer to family in the event that I might need help, as yet not required - it's just nice to know that help is not far away. I would say that my present life is now stress-free compared with earlier years.

I hope some of my comments have helped you and that you are keeping well.

Best wishes, Chris

[htpi1543 in reply to phoenix45]

Thank you for the reply and some good points.

[Bunkin]

Your results do fluctuate. Remember when I first started this I was at GFR 12! Now with changes I am at 17. If it would put your mind at ease, I'd say go see your doctor. DONT PANIC! You are still in a good place. I too get tired more easily and sometimes my back gets tired but just keep going. You can bring it back up!! I drink lots of water. I take a lot of supplements. If you want to know what they are let me know and I'll be glad to share with you. As always, prayers for you. God can do anything!!!

[rabbit01 in reply to Bunkin]

Thanks very much Bunkin. Yes I know how well you have done. I will concentrate on bringing the levels back up. First thing is that I am going to cut my hours down at work. I get a lot of stress from work and I don't think this is helping me at all. So new start, starting from Monday! Thanks as always for your support. Will keep you update and you do the same for me. Take care.

[Bunkin in reply to rabbit01]

Work is stressful, that's for sure. I'm in process of looking for another job that's less stressful!!

[jbennett in reply to Bunkin]

what sort of supplements do you take?

[Bunkin in reply to jbennett]

Hi, first I have polycystic kidney disease. I drink 1-2 cups nettle tea daily, astragalus, multi vitamin, alpha lipoid acid, D3, coQ10, selenium and cut E. Was taking vitamin c but had to stop due to kidney stones. Hope this helps you. In the program I purchased it lists different kidney diseases and what supplements to take for it. As always, you are in my prayers. God can do anything😀

[Bunkin]

Went to doctor today. Labs are much improved all across the board. Doctor said it was spectacular😀😀😀 you can do it too!!! Prayers for you. God can do anything!!

[rabbit01 in reply to Bunkin]

Wow that is great news Bunkin, I am really pleased for you. I think I need to spend less time worrying and more time in prayer.

[Mgt8]

Hi

I'm 55 yrs old egfr 5 and not yet on dialysis. Like you I feel generally well except I do get very tired. My next appointment with my kidney consultant is early December. I have everything planned for home haemodyalisis which will kick in when I need it.

The most important thing i feel is to be fully aware of your options and well informed of your prognosis. Then you can feel confident that everything is covered and can get on with enjoying life in the meantime.

If you feel you need more information then certainly contact your kidney unit. You should have a particular renal nurse assigned to your case who you can contact with questions. I find that they have more time than the consultants.

Best wishes, Hoping it goes well for you. Margaret

[rabbit01 in reply to Mgt8]

Thank you Margaret for writing back. I am just coming up to 50 years old. You are doing incredibly well at just 5% EGFR, I did not know it was possible to function at this level so that has calmed me down somewhat knowing that (with luck) I still have a way to go. I don’t have a renal nurse or anyone assigned, maybe I will do now as I go into stage 5. I see the renal consultant once every four months but as you correctly concluded she does not have much time to talk to me and after a quick review of my latest blood tests she packs me on my way. The whole session only takes about 5 to 10 minutes. We have never discussed progression of my kidney failure or options for treatment but then I have been a stable 18% or so since diagnosis back in April 2015 so I guess she did not want to worry me as it was imminent. Thanks very much for your support and advice.

[Bunkin in reply to rabbit01]

When I asked my doctor about transplant and dialysis when I was at 15 GFR, he said not even time to think about that yet, so don't worry rabbit01!!

[kithsirid]

Go to you tube and type " ginger treatment for kidney failure "

aLSO START EATING A GREEN APPLE EVERY DAY TILL YOUR CREATININE LEVEL DROPS, in other words GFR will go up,

ALSO WHEN U VISIT YOU TUBE, TYPE 'apple cider vinegar ", start using it

Doing so my GFR rose from 28 to 98 , this no doctor will beive,

wish u good health

[rabbit01 in reply to kithsirid]

Thanks very much for writing back with your advice.

[kithsirid]

are u taking kidney friendly diets ?by now u must be knowing what to eat n what not to eat,

i think your doctor has mislead you,

I was able to boost GFR by resorting to apple cider vinergar Brew and and GREEN APPLE IT TOOK ALMOST 2-3 MONTHS FOR ME TO DO THAT,

dID U VISIT YOU TUBE AND FOUND ANY THING?

SEND ME YOUR EMAIL ID ?

PL WRITE ME BACK

WISH U GOOD HEALTH

[Chin69]

To Kithsirid, I don't believe that you went from 28-98, why did you ask for the person above's private email, this forum is suppose to be a safe haven for us to talk to one another?

[bazt in reply to Chin69]

I was wondering the same thing, sounds like a con to me.

[NORMANDY]

Hi Rabbit01,

I am responding to your post, which i see is 4 months ago. Ihave always been a huge consumer of MEAT, with rice and potatoes. Anything vegetable was never eaten.

We are all different and i do not think that a ONE SIZE FITS ALL is applicable to our illness, however i do believe that ones own mindset and a MEAT FREE diet should be tried.

MY symptoms at Stage 5 are the following:-

ITCHY SKIN- Maybe once a week, not all over, akin to a mosquito bite in one spot.

FATIGUE and Out of Breath:- When having climbed about 20 stairs. Went to a PULMONOLOGIST WHO HAS GIVEN ME AN INHALER TO USE WHEN NECESSARY. THIS REALLY HELPS.

BACK ACHE:- HAVE BEEN FOR ULTRASOUND, however the report says NOTHING REMARKABLE SEEN, OTHER THAN DETECTING A KIDNEY DISEASE

THE ABOVE ARE THE ONLY SYMPTOMS THAT I AM EXPERIENCING.

NORMANDY

[rabbit01 in reply to NORMANDY]

Thanks very much for replying. Yes I certainly get tired easily and out of breath too. Like you I have been given an inhaler which helps a lot.

[lauralou88 in reply to NORMANDY]

Hi, I suffer with exactly the same as you. My itchiness isn't there constantly just some times..but drives me completely bananas when it starts.

Out of breath like I smoke 60 fags a day and could fall asleep pretty much as soon as I wake up, although dinner time is my worst time for going drowsy.

Also my backache which I have suffered with on and off for many years. My GP says that CKD5 doesn't cause backache will be a strained muscle or something 😡😡 obviously I new what I felt and how I feel regular to be told by a pro I'm a liar. Didn't feel nice coming from someone who should be listening and giving advice.

Hope you are well

Xx

[rabbit01 in reply to lauralou88]

Thanks for writing back. Yes, I feel awful when I get up but I am generally ok by about 9 in the morning. There is obviously a technical reason for this but not one the doctors have been able to tell me about. My theory is the body does most of its repairs while we are asleep so a lot of waste products get generated and our ailing kidneys struggle to process it all hence feeling unwell in the morning. Like you around 6 pm to 8 pm is when it hits me hard as well. I don’t feel unwell at that time but boy do I feel tired. Lots of people note having backache with kidney problems so it sounds like you doctor is not well informed on that aspect of it. As you have described I get out of breath. Just walking up a short hill and I am puffing away. I got one of those blue inhalers and it helps when I do run out of air. My EGFR bounced back from 15% to 18% over Christmas and I did feel better but it has the gone to 17% and now 15% again . I guess it won’t be long before they are talking to me about what form of dialysis I should be on. I can’t stand needles either but I think the HD would still be better. I often get looked at oddly by the other patients in the kidney waiting room like “why is he here?” In my experience, they are all in their 70s and 80s. I am only 50 and I see you are only 28. What caused your kidney problems in the first place?

[lauralou88 in reply to rabbit01]

Yes I'm the same. It knocks be about dinner time but come the evening when it's time to settle down I get my second wind 🙄

What you said, does make sense - the repairing whilst resting. I keep getting told to rest but have 3 children youngest being 3. So keeping busy or atleast on my feet in a day time makes it worth while when bedtime comes round. My breathing is the same, just going up and downstairs does me 😬

My function has been the same Over the last month and a half... luckily. But creatinine levels are creeping up at the mo they are 414!

To be honest I did want PD until I was stupid and watched the video. Stuff like that doesn't bother me as a rule but that made me feel sick also watching it being done with just local anaesthetic 🤢 Sooooo hate needles but it's just gotta be done hasn't it. I think exactly the same when I go to my renal clinic their all in between 60 - 80+. I was born with reflux something something lol.

My mum is best to tell the technical term. I know I've only ever had 1 working kidney as the other is the size of a kidney bean and my "good" ( if I can call it that) is badly scarred. How about you. 😊

[rabbit01 in reply to lauralou88]

On my 48th birthday in Oct 2014 I got a chest infection. I remember it well as I felt so bad I came home from work early and thought to myself what a rubbish birthday I was having. The doctors gave me Amoxicillin and my chest infection started to get better but I started to feel odd and could not eat anything. I did notice my wee had a strong smell and I had a metallic taste in my mouth but did not worry about it too much, just assumed it was the after effects of the antibiotic. After a week or so everything went back to normal or so I thought. I then had a routine medical and as part of that they did a blood test and found my kidney function was 18% i.e. stage 4 CKD. The doctors think it was my own immune system that attacked my kidneys. It eventually stopped but the permanent damage was done. That was in April 2015. I cut out eating red meat, coffee, salt and cola. I started to drink a lot more water and lost some weight and got to the dizzy heights of 21% EGFR in August 2015 but ever since then it has been gradually getting worse. In September 2016 it was down to 15% and I was feeling so sick and tired all the time I could not function at work. I do a lot of computer work so they very kindly let me work from home 4 days per week and it certainly helped big time. I even bounced back a couple of % but that has now dropped again so I am right on the cusp of stage 5.

[Skyleem]

Hello rabbit01

I notice that many of the comments on here talk about having given up certain things like red meat and coffee. I am border line 4/5 CKD with levels of 15 but have never had any one talk to me about what I eat and what I should stop. The most said by the consultant was that tomatoes and chocolate I should cut down. I keep asking if there is a diet I should be following but get told it is not necessary yet. At my last appointment my consultant started talking about dialysis and creating a fistula and has put me down for a scan of my arms to decide on a suitable place for the fistula. I've also been invited to go to a meeting where I will be shown just what dialysing at home would need regarding space, cleanlines and comfort for four hours 3 x a week. I have some stomach problems that will prevent my going down the line of PD, however it is possible to change methods of dialysis at a later stage, especially once all the niggling problems of itchiness, backache and infernal tiredness have improved. My consultant says he will keep me off dialysis for as long as possible - I guess this decission depends on how the consultant like to treat each person - mine would rather a patient saw him every 3-4 weeks to keep a close eye on things. I am down to 6 weekly appointments already.

I find it very reasuring to read everyone's comments - they are very comforting - I hope we can all keep in touch as things progress.

[bazt in reply to Skyleem]

Hi my husband is now ckd 5 levels at 14. his consultant has been talking about what sort of dialysis and his options for over a year. he is unable to have a transplant due to having prostate cancer. when his level got to 15 he was sent for a scan on his arms to see the most suitable place for a fistula , he had the fistula done in sept. the reasons given was that it needs about 6 months to be ready for dialysis even though he has been told he probably will not be on dialysis for quite a while but it it is better to be ready well in advance.

[rabbit01 in reply to bazt]

Hello, I am around 16% EGFR and the consultant has asked me to think about dialysis options. Out of the two I was thinking that HD would be better but the consultant seems to be pushing the PD route. I know the fistula has to settle down which is why they have to have a long lead time before actually using it. How is your husband doing?

[bazt in reply to rabbit01]

Hello, tony's fistula seems to have heeled well he has to go for a scan on it in a weeks time to make sure it is working as it should be and will then see the surgeon a week after that to make sure all is well. it has taken well over a year for his egfr to go from 16 to 14 and it has been on 14 for at least 6 months. in himself he is quite well although I have noticed him getting out of breath more than he used to. he also has advanced prostate cancer and is going for an mri scan to check if it has spread in nov, he has had the cancer for 11 years with no side effects at all so has been really lucky although that seems to have become more active. Tony was thinking of PD but he is not that good at following instructions and also we have pets and it is quite hard to keep them out of the rooms and cleanliness of all the equipment is paramount.so he has opted for HD. PD you need quite a lot of space to keep all of the equipment etc you need as well although if you are disciplined it means you can travel without too much trouble as the equipment is portable. hope you are keeping well .

regards barbara