Im 41 with Stage 4 CKD

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Hello.. Im new. I have stage 4 and have been told I may need to have dialyses. I want to avoid that!! I found a recipe for Barley Water. Is that a good way to repair my kidneys? Will it help me prolong getting dialyses?

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  • Posted

    Hello Joe,

    My GFR is now down to 8 and I have decided to not accept dialysis and let nature take its course.

    I have been visiting a GP/Herbalist for a year but this has had no positive results but, I am willing to try your Barley Water recipe if you will either post it here or pm it to me.

    I truly wish your own symptoms do improve and please keep us informed of this.

    Kind regards

    Graham

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    • Posted

      Runedog,

      I am sorry you have decided not to accept dialysis but also respect your decision grately, what a brave thing to do.  I hope all goes well for you.

       

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    • Posted

      I posted a link for the barely water,but I guess they deleted it.

      The recipe for the barely water is

      1 cup Pearl Barely

      5 cups water

      1 ginger root

      2 sticks cinnamon

      1/2 lime

      2 tps honey.

      Rinse barely till clean through strainer. Place barely, cinnamon and ginger in 5 cups of water till boil. Then simmer for 20mn.

      Strain mixture into a small pitcher.

      Add honey and lemon. Chill and drink.

      Hope this works for you. It had made me feel a lil better and brought down the swelling in my legs. Joel

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    • Posted

      Have you thought about PD type dialysis?  You are in control and do it at home.  No blood involved.  I wouldn't give up so soon.  You can still live a good life.
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    • Posted

      Hi,  

      From you post you don't sound like you do either tyoe of dialysis? Yes there is no blood involved with PD and while it is kinder to the body than haemo its not as risk free as the above sounds.  Before you take up any disalysis speak to people who actually do it and then make your decision.  I would never suggest either dyalisys is easy as it is not.  For PD you have an operation to have a catheter fitted (depending on where you are in the world the operation is diferent) mine has cuffs on it and it is curly so I could drive for 6 weeks and couldn't walk upright for a few days.  Then there is all of the equiptment you need to store, stock checks you need to do and the maticulas cleaning of your treatment room and yourself so you don't get potentialy fatal peritonitis.  You have to adjust your lifestyle to ensure that you can do the full 8 hours and plan for any extra time as it doesn't always go smoothly.  So reading about it and the cold reality are very different just so you are aware its not all sweetness and roses.  There are other issues like the pipe can twist back on its self which is not pleasant.  I have been lucky and had a mostly good experience so far (touch wood) but I when to speak to people before I made my choice.  I wouldn't do Haemo but lots of people do and it suits them so its down to personal choice.  

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  • Posted

    Hi Joe,

    Sadly this will not help at all, once you have renal faiilure there is nothing you can do to stop it apart from take the blood pressure meds you are given.  If it was a simple as drinking barley water then no one would progress to end stage.  I am sorry if this sounds blunt or is not what you wanted to hear however you need someone to keep it real for you and no amount of herbs or potions stops this horrible disease.  My advice to you is start researching the different types of dialysis now so it is not a shock to you when the time comes, unless you have something that has caused your kidneys to stop working on a less perminant basis then you need to come to terms with what is going to occur, harsh maybee, needs to be said yes.  Even if you have prepared for years that you will need dialysis it is still the shock of your life when someone suddenly says its time so the best thing you can do it pick what is right for you and your life.  Dialysis is not so bad you get your life back smile

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    • Posted

      Helen I didn't imply anything about PD was easy just that it didn't involve the blood aspect.  Many people don't do hemo because that issue alone scare them.  I would say having all the stock in your house to keep you alive is the least to worry about.  I know it is a ton of supplies but it keeps you alive so it all relative.  Yes it does have drawbacks but some people like the freedom of PD and knowing they are taking care of themselves.  It is empowering for some.  Again no it isn't without its problems but some like it better thats all.
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    • Posted

      Sorry Helen I am not on dilaysis as of yet.  Just have done a ton of research and read different forums of peoples opionions on dialysis for the future.  I want to be well informed when the time comes.  Of course there are good and bad of all kinds of dialysis but given the alternative dialysis is the only life saver besides transplant which of course has its own challenges.  Can I ask how long you have been on dialysis? 
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    • Posted

      Yes of course, I have been on dialysis for nearly a year now.  I agree plenty of research is needed.  I would also advise you speak with your neph to see if you can go to your local dialysis unit to speak to the people there.  I knew I didn't want to do heamo (it wouldn't of fit in with my life, I have children, a business and I work full time) but I wanted to go and speak to the people just incase PD wasn't suitable.  In the UK they try and push for PD where ever possible as it doesn't put as much sstrain on resorces, but there are some that cannot do PD so I wanted to see just incase.  It was useful as the people I spoke to had been on PD so I was able to ask about that too smile. Then there is life on the list (I am also going through the process of live doner exchange, I don't know where abouts you are but in the UK you have to be on the TX list too) I had my first call for a possible non living donar the other day which brought mixed imotions I felt sad for the family.  I was well prepared by my team for the chances of sucess so I was ok when it didn't happen, I also know this can happen many time in the future.  More to be prepared for.  I would be more than happy to give you more information regarding PD from a personal point of view if you require but I can't tell you about haemo.  Good luck in the future  
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  • Posted

    Is there a special kidney/ herb specialist that is not mainstream that I can see that is around my area? Im in Ventura Co.
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    • Posted

      Hi Joe,

      Sadly I cannot help on this one as I live in the UK. Please Google your location and what you are looking for and hopefully you should find one.

      Best regards

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    • Posted

      Joel, you need a renal dietitian and there should be one at your local hospital.  If you progress beyond stage 4 then the dietitian will be able to advise you on the best diet - usually one that is low protein. 

      As Helen has said, although good for healthy kidneys, barley water will unfortunately not help with your kidney functionat this stage.  As a child with kidney problems, I was given copious amounts of barley water (pearl barley boiled until soft and then strained, with fresh orange or lemon juice added before drinking), but it didn't prevent me from having to have a kidney removed.

      What is your present eGFR? 

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    • Posted

      My GFR is 20. So Im close to getting a fistula. I dont want that. They say becoming a vegan is the only way to heal your kidneys.
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