Stage 5 CKD

Hello all,

I live in Cape Town, and have been a CKD patient for 6 years. 3 of the 6 has been at Stage 5, which i manage to keep relatively consistent. My Nephrologist does not know that i also see a Homeopath who helps keep me on track.

I am told that by trying to to raise my GFR, my Creatinine level will drop. Maybe thats wishful thinking....... perhaps.

Would be happy to answer all mail

Best.

30 Replies

oldest • newest
  • Hi Normandy, I am new to all this, so I won't dare even respond to anyone, in terms of information. I just appreciate being able to come here to read and learn. I have found people to be kind, knowledgeable, and generous with their time.

    I wish you well and hope you continue to visit here....take care, Jo-Anne

  • Hi Jo-Anne,

    Welcome to the club and thank you for your mail.

    Any concerns or questions you may have, please feel free. I am not a Doctor however i feel that with my experience of CKD and the amount of research i do continuesly keeps me quite up to date.

    Best

    Normandy

  • Hello Normandy,

    Good to hear from somebody who lives with Stage 5 Ckd.

    Since a transplant 16 months ago my ex Gfr has fallen to a current 11. When I avoid infections (difficult for me)((see previous posts on transplant site)) - I feel fine.

    I do not believe in homeopathy, but know how important, personal beliefs are to well-being, so if you gain support from it, all to the good.

    I feel an optimistic mindset is the most useful tool in our defences, along with a sensible diet and plenty of rest.

    I wish you the best and know that plenty can be achieved despite the illness,

    Regards, Tashe.

  • Just for some guidance Tashe ,how do you keep your optimistic mindset? I do ok for a few days and then get down as I worry about all the peremeters of having ckd. I really have no support system and rely on feedback from all the kind folks on this site. I have an anxiety disorder, and this adds to more stress.

    Also what do you eat everyday as sensible diet? I am stage 3 and seem to eat same food often and not much variety. Chicken, fish, rarely meat, veggies, fruit. Oatmeal or Rice Krispie cereal and white bread, pasta, and rice. I use almond milk. Am new to this as diagnosed in August. Any feedback would be much appreciated!

    I wish you well with your health and hope you can continue to feel well!

    Grams 70

  • Hello Grams 70,

    I think that I love being alive! I love the simple things, waking up to a new day, feeding my cat, seeing the day starting. I'm lucky that I've always been able to see beauty in very little. I read a lot and follow the news and enjoy cooking.

    My diet is simple -for breakfast I have natural yoghurt, honey, oats and fresh fruit. Lunch is usually something on toast- eggs or cheese: or soup.

    Main meal is as varied as possible- using various spices to change flavours and lots of garlic! Vegetable, egg fried rice is quick and easy!! My Granny's catch phrase was 'a little of what you fancy does you good.' so I don't stint on biscuits, a glass of wine or a gin and tonic if I feel like It!

    You are just coming to terms with a diagnosis of kidney disease. Be kind to yourself and listen to what your body tells you. I wish you best regards and good luck in your journey, Tashe x

  • Tashe

    Thank you so much for your kind and prompt response. I appreciate your your helpful information. Wishing you all the best! Grams 70.

  • What a lovely response!!! Thank-you for sharing what you have shared...I am sure that it will be comforting for "Grams 70" , as well as many of us. Continued success...really appreciated your 'menu'.....I need to get on a simple and consistent plan, looks like you have conquered that.....as for me, I love Baileys...lol....have cut way back, as it is so full of calories, but I think it is 'healthy' NOT to give up everything, Always.....that just seems like a set-up for disappointments and self-judging...which I really fight against.

    Take care, Tashe! Thank-you! Jo-Anne

  • Thank you Jo-Anne for your response. My next challenge is to get my exercise routine going!

    Regards, Tashe.

  • Hi Jo-Anne,

    Somehow i think that mail has been misdirected, however i should love to receive the 'menu' and explore a simple plan.

    Stay well,

    Norman

  • Sorry...but, I am OLD...lol...and I struggle with all this hi-tech stuff...thanks for letting me know. I need to be more careful. Hope today is a good day for you, Norman! Take care, Jo-Anne

  • Jo-Anne,

    Its only a number, not a state of mind

    Always be well,

    Norman

  • Well done for managing to keep your kidney function consistent. In fact, the creatinine level is the main blood parameter that they use to calculate your kidney function. So, the way to look at it is if you were to lower your creatinine level that would have a corresponding increase in your kidney function. That is not wishful thinking that is a fact. Also, another little-known fact is that creatinine itself is not particularly toxic to us. It is just a handy way of measuring kidney function and if large amounts of creatinine are present this shows our kidneys are not working well and indicates that there will also be large amounts of other toxins in our blood which are not being removed by the kidneys. Creatinine is looked at when they take blood samples as it is an easy to measure substance and provides a reliable basis to estimate kidney function.

  • Hello Rabbit01,

    Thank you for your mail, CKD is a very difficult illness for me to fully understand. Amongst my friends I have an assortment of docters ranging from Professor to Nephrologist, Homeopathic practitioners, and Chinese Accupuncture doctor's.

    From all the above, i receive extremely varying degrees of of professional help. The Nephrologist gets my blood results every 3 months, the potassium, phosphate, sodium and Heamoglobin results are all still in the correct range, however the Protein is way out. The Nephrologists say eventually Dialysis is looming. The Homeopath says " See my tinctures are working, but you must stop eating MEAT" I have seen his results where he has improved Creatinin by 20%. This he says is because his patients stick stictly to a plant based diet, and so we go on. The One Nephrologist says " NO BANANAS" while the other says" YES BANANAS "

    The Accupuncture Doc says he is realigning my Meridian lines???

    I have now cut MEAT from my diet ad will try the plant based diet. My weight has decreased from 124kg to 104kg over a 18 month period.Blood pressure from 160 down to 134. Type 2 Diabetes has completely disappeared.

    Look forward to comments.

    Best

    Normandy

  • Hello, goo you are keeping it steady! What is your GFR if you don't mind my asking? Prayers you continue to do well. God can do anything😀

  • That was good not goo!!

  • Hello Bunkin,

    Thank you so much for your message. My GFR last week was at 10 and my Creatinine was 490. Being in CAPE TOWN we still calculate using U.K or Imperial measures.

    I also take note of your note relating to our Highest belief, Thak you.

    Normandy

  • So you've been at 10 for 3 years? That is so hopeful!

  • Bunkin i have actually bounced around from 7 to 14 over the last 3 years.

    As soon as it starts getting better i start going off my diet, stop going for Accupuncture, Eat loads of MEAT and BANG DOWN AGAIN.

  • I raised mine too from 12 to 17 but I'm afraid I've been very bad over the holidays. Now it's time to get it checked and I'm a little scared it will be low again and he'll bring up the dreaded word, dialysis!

  • How did you manage to go from 12 to 17?

  • I got a program called kidney disease solutions and followed it. I exercise 30 minutes a day, take supplements, drink lots of water and TRY to eat right which is hard! I am not working at the moment so I've kind of fallen off the wagon! But trying to get back on. The program was put out by a guy from Australia

  • Hi Bunkin,

    Was the guy in Australia Duncan Capistrano and did you have to pay him and download the E book.

  • Yes it is Duncan! I paid for the program which was sent to my email and I printed it out so if have a hard copy. I want to say it was around 55.00 but don't quote me on that! Worth every penny

  • Bunkin thank you. I have his solution that was on offer about 3 years ago.

  • Maybe you have better medical treatment in Cape Town. I'm pretty sure that the doctors here, in California, start dialysis at stage 5. I guess it depends on your GFR. I just recently found out my GFR is 57. (Stage 3a). I wish l knew how fast this progresses. I'ts good that you're doing both western & natural resources. I thinks the best approach as long as the person advising you knows the dietary requirements for ckd. Best of luck to you.

  • hi normandy..stage t is about 10 to 20 percent function ..when at 16 you will go on transplant list if the same as england..keep fat...stress low...

    i had transplant last august all going well so dont give up take care from toerag

  • Hi Normandy. Hoe gaan dit? I am a S.A living in England. Come from P.E. I was diagnosed Stage 3 Kidney disease about 3 years ago, but just seem to have been 'dropped' by the Medical profession. However did you manage to go meat-free, as a S.A???

    I wil be asking my dr to refer me to the Nephrologist, again, as have RLS and kidney pain. Alles van die beste.

    karools16

  • Nou ja Karools 16, sal jy dit glo! as strong South Africans, we have to get caught up in THIS dilemma. To answer your question......., with great difficulty, seeing that i could finish 10 chops and the same of amount of ribetjies. Our illness is certainly a complicated issue and i will keep on trying every type of treatment whether it be conventional Western or Eastern, CHINESE or INDIAN.

    As you know Cape Town is pretty jacked up on most things medical, however when it comes to Nephrologists, i seem to get the impression that they only have one prepared recommendation, Norman, we should prepare you for a FISTULA.

    PLEASE, if you can, try and see a Top Homeopath, also find the best Accupuncture Dr. Last but not least try a good Naturopath.

    Karools, when you say Kidney pain, can you please try and define such pain.....

    Stay strong.

    Norman

  • Normandy, if you're prepared to add yoga to your list, I can recommend an excellent private yoga teacher and yoga school in CPT. :) Also, for a plant-based diet, in SA one is totally spoiled with the wonderful avo's and affordable fresh produce.

  • Dear all i following my Vasculitis diagnosis in Dec 2015 i finished with CKD Stage 3/4 which at times is difficult to deal with but having adjusted my diet it is somewhat easier to manage although miss certain things and can get depressed at times.I get 110 per cent support from wife who is a rock for which i am eternal grateful.I have learnt now not to plan things now but just 'DO IT'.I am planning to do a 7 mile midnight walk later this year for our local hospice.Got to be positive.

You may also like...