End stage renal failure

[jg2015]

Hi everyone, I’m new to the site but have scrolled through for the past hour and would like to comment on the positive attitudes that is coming through.

For the last 17 years I knew I had kidney disease although for the first 10 I can quite easily say I was in the dark as my Dr told me very little, didn’t explain what the stages were ( I was diagnosed after biopsy at 3 with Fsgs) and was never advised to restrict any foods.

I’m now at stage 5 have 11% function and feel quite angry that I haven’t been able to stop deterioration myself. The last couple of years I’ve tried to take control of my Dr’s Appointment’s, starting reading a lot more information on the internet, had a renal artery scan organised to see if I could find another reason for my ckd but haven’t made a great deal of progress although I feel a bit more armed with information so that I can have a two way conversation at the specialists appointments now.

Anyway my point now is to learn as much as I can from this community about what comes next, I’ve been for patient education in dialysis, meeting the Surgeon next week to talk about having pd tube inserted - although for now it will be kept under the skin as it’s not needed - and drastically changed my diet to vegan which thankfully is becoming easier in supermarkets and restaurants.

I notice a few people have mentioned the book by Lee Hull, I found this while internet searching a few months ago. I stared reading it with a highlighter as it can get a bit heavy going but what I want to know is, are any if you following up on any of the additional medication he’s talking about? Have you approached a Dr and asked for them, the book suggests they are not easily available in the US ( I’m in the north east of England) but I doubt a Dr is going to issue anything a patient has read about so wanted to know your thoughts. I cannot remember what they were called now but he mentions them in the book as another kidney supplement.

I’m not skeptical because I honestly believe his theory of plant based food works although I’m not so sure for stage 5 I wish I had known about it at stage 3. I’m following the page of his on Facebook where a lot of people are saying they’ve reverted CKD from stage 5 to 4, 3 to 2 etc, am I being naive to believe this, has anyone been able to do drastically change their prognosis?

I’m hoping for some genuine answers from this forum of anyone that has managed to get their GFR to increase by diet. The Dr’s I talk to seem to refer you to the hospital Nutritionist ( who I never thought was any good) but are more interested in tablets and don’t seem really encouraging of the benefits of the stricter diet.

For anyone reading this at an earlier stage I wholly recommend switching to Lee Hulls diet as I think you can drastically slow down your deteriorating function if you are educated on the right foods to eat, there’s so much now on nutrition that there has to be a benefit for kidney patients. It’s honestly not as boring and tasteless as you might think going vegan as the availability of recipes and ingredients is so accessible.

Sorry for the big waffle on, thanks for staying to the end if you did, I’d love to hear from anyone who has any great tips for proactively managing CKD.

Thanks a lot

[Bet117]

Hi jg15!

Welcome! You have come to a wonderful community where you will be in touch with caring, knowledgeable people who have experienced what you have and are going through.

Please look into two other communities as well; Kidney Disease and Dialysis - a lot of great discussion!

I have a dear friend who lives in Southend by Sea, UK, who has shared many of her experiences with Minimal Change Disorder, an the autoimmune kidney disease as well how the medical system works in the UK; it has been quite a journey for her.

Unfortunately, she was taken into the hospital with swelling, pain etc. before she could see a kidney consultant, who has taken splendid care of her; and she has a wonderful GP who did his very best for her.

She was just told to ease on the red meat and watch the salt.

Hearing what you tell me about diet and your experiences saddens me; perhaps your consultant can assign you to another dietician; but we will go forward.

Unfortunately there is no cure for kidney disease but with diet and medication, it can be managed. I am sure that you will have additional responses to mine from folks who have improved their kidney function. The key with CKD is to manage it so that the progression is slowed to stable.

GFR will fluctuate; such things as hydration at time of testing and stress can play a role.

I did read portions of Lee Hull's book as well as take a Kidney Class through Davita in the US. Both have good ideas but bear in mind that works for one, may not work for another. It is balancing what works for each; low sodium being biggest watch.

I have been plant based since 2017 and have never

been happier; don't miss the meat a bit. I eat low sodium, steam or roast vegetables and add plant protein as lentils and chick peas to my diet for protein. ( I am allowed) My girlfriend often cooks with Quorn which is easily available in the UK for protein.

My concern is at the stage you are at to speak to your consultant about how much protein, water, sodium, potassium and phosphorous is best for you; what he/ she recommends to best serve your needs.

Take a copy of your labs with you as well as a notebook to note discussion and questions.

If you have a friend or family member to acccompany you to the appointment to scribe for you; all the better.

As far as obtaining books; honestly try Amazon as I have found many there and Ali Baba. Let me know what you find. In the meantime, next I speak to my friend, or email, I will ask for some resources that she is aware of.

Stay positive and advocate for yourself.

Reach out to us at any time as one will always reach back.

Bet

( and there is no Big Waffle here; we share!)

[MAS_Nurse]

Hi jg2015,

Welcome to our community. As you have begun to find that folks here are very supportive and well informed. I am not aware of Lee Hull's book, but here are some links to more information about managing CKD which you may find helpful:

Kidney Research UK:

1) kidneyresearchuk.org/health...

2) kidneyresearchuk.org/health...

Edinburgh Renal Unit: edren.org/ren/edren-info/ck...

Do keep in touch.

Best wishes,

MAS Nurse and Moderator

[BajanPatz]

One question and no comments at this time...

Are you STILL attending the SAME doctor that kept you apparently "the first 10 years in the dark as my Dr told me very little, didn’t explain what the stages were."

[MAS_Nurse]

Hello jg2015,

I am another nurse moderator who became very interested about Lee Hull's book so as a qualified nurse who has an understanding of your condition I purchased the said book for myself. I have dipped in and out of it (it can be heavy going) and at his website that is kidneyhood.org

Obviously I cannot endorse his book as that is not within our remit but for him the contents, diet and treatments have worked. The website is free and the kidney friendly recipes look interesting. My suggestion to you would be the same as our other lovely informative members have said - talk out all of your questions with your Consultant and GP,take someone with you and keep an open mind going forward from then.

Also please look at the 'pinned posts' and 'topic' section on your screen.

Good luck and keep in touch with the members on here.

MAS Nurse & Moderator.

[WhollyAligned]

For some more inspiration, have a listen to this podcast - it is me reading the first chapter of my book.

buzzsprout.com/246643/13230...

Know there are always ways to help yourself. Yoga and nutrition and deep self enquiry have been magical for me in terms of awaking my inner physician. Trust your body and do what works for you, like us all, are unique - so the tuning in and listening to your inner voice is important. I dedicate a whole chapter to The Value of the the Therapeutic Rapport as this is key. Very important we give a voice to our concerns and create the space to ask questions. Medical arrogance is a deflection from truthfully listening. You know your own body and mind best. Nephrology is highly medicalised and had not really advanced into an integrative form of medicine in spite all the evidence around nutrition and proper breathing along with kindness and compassion. I know having been a patient in the NHS for over 30 years and seen how it has not evolved. A great shame and a great disservice. This of course if my opinion. and you are welcome to take it or leave it.

Don't lose heart. Follow what resonates for you and show up each day for the journey.

Best,

Ciara

ciararoberts.com

wholly aligned.com - you can preview the first 50 pages or so of my book here.

[Thegunawangift]

Please join Natural kidney Journey group on Facebook. Will help your kidney through change of lifestyle. It's free and tons of encouraging testimonies.

[Denise87 in reply to Thegunawangift]

I second that!