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Kidney Disease
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Advice From Long Term CKD Patients

Would love to hear your story from some of the members who have lived with kidney disease diagnosis for 10 years or more.

What do you do to slow progression?

Has your CKD gotten worse and if so what was the progression like?

Has anyone gone into remission or completely stopped progression and if so how?

There's a lot of newbies such as myself on here who were only told within the last year or two that they had CKD. Would love to get a long term perspective.

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Zazzel,

I think that reaching out to others with long term CKD, what they have done and how they have coped is an excellent thought.

Although we are all different and have different added health constraints, we all share the same need...

Support!

...and that's why we joined this community!

Bravo!

Looking forward to hearing some stories and ideas.

Warm Thoughts and Thanks!

Bet

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This is an excellent thought, indeed! And that is the reason why one joined this forum! And yes we are aware that the exact same thing may or may not work for us and that we should not do anything without consulting our care team. But please share your stories.

I recently said this to Coolbeaner. I may not do everything that he does but his story inspired me to continue to search and to do more.

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SN,

You are amazing and a credit to the community!

Keep the inspiring thoughts and ideas going!

B..

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Very kind of you to say that, Bet. Have learned so much from everyone. I think we have an opportunity here to share our information and complete the CKD jigsaw puzzle life throws at us, piece by piece.

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Great idea, as the people on this site have and are living with CKD. I am still on my quest to find a nephrologist to has CKD. I am reasonably sure that they will have more to say than those who tell us we can't do anything. This is like a lifeline for most of us!

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lowraind,

Log on to davita.com and take a look. They can help find a nephrologist in your area. If you can get to one of their free Smart classes, ask the social worker as they are very nice.

I attended class in my area to add to my knowledge.

It turned out that the nephrologist who attended to the dialysis patients was the partner of my GP who left. He has an excellent reputation.

If I ever left my present hospital/ specialists, I would consider him.

Ask your GP for a recommendation and google them..see what Health Grades and WebMD patients rate them.

Please let me know how your trek is going!

Hang tight!

Bet :)

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Thanks for the advice, Bet 117. In fact, I am attending a Kidney Smart class today. BTW, my family doctor is the one who referred me to this practice. From my own study, I feel that the people in this practice are not necessarily looking for what is best for the patient, such as telling me that at GFR 36.6 I could eat whatever I wanted. Luckily, I had been monitoring my diet for three months by then, and my GFR went up to 54.0. As I take a harder look, I may have to change the hospital, also. I am going to try to find a hospital that specializes in kidney disease. Now that I am attending the Kidney Smart class and have sent my fd a list of interactions for us to discuss together at my next meeting, I will be on to Health Grades and WebMD. As Roseanne Roseannadanna said, "Well, Jane, it just goes to show you, it's always something — if it ain't one thing, it's another."

lowraind

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Okay, an old SNL reference. That may be a first for this forum but hopefully not the last reference to a classic moment from Saturday Night Live. Thanks for the morning chuckle.

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Glad to oblige! We all need a chuckle--it's good for the health!

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True.

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Hi lowrained,

So glad that you are going to class today, I am sure that you will find great information and help.

As far as your doctor taking proactive steps to guide you to raise the GFR and the dietary constraints- sinful. I wouldn't go back. I am so glad that you are smart and did your homework. Ugh!

Please let me know the outcome of your class and if they were able to guide you.

I will be thinking of you!

I care!

Bet.:)

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Well done excellent improvement to your GFR.

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This is an excellent way to learn about your disease and what others have done to cope. I wish I had something like this when I was diagnosed.

I have had kidney disease due to FSGS since 2004. It was very aggressive. I was put on steroids and diet restrictions to try and slow down the disease. Unfortunately, it did not happen. In 2006 I had a living related kidney transplant, but the FSGS came back and I have been on dialysis since 2007. PD, HD and In-Center nocturnal HD. I am in a good place right now.

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Thank you for sharing. 11 years on dialysis and doing well. That's great to hear. Can you tell us what kinds of things you do while doing dialysis. Obviously you can watch movies, read or do computer games, but are there other things you like to do?

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Thanks for sharing, Superman!

You are a role model and an inspiration to many apprehensive and fearful people about what dialysis is about, entails, and that you can have quality of life.

Please continue to communicate as Zazzel suggested. Everyone's case and body is different, but advice and hearing it from someone who is " walking the walk" can be so much more reassuring and better than reading it from a book or article.

Thank you so much!

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Thanks, Superman!

You are a role model and inspiration to many apprehensive and fearful members of this community.

Although our bodies are different and respond differently to medication/ treatment, having someone to go to who is "walking the walk" can be so much more reassuring and less clinical than the literature that they will already be given. As

Zazzel said, to know that there is quality of life will mean so much to so many.

Sending you warmest thoughts..

Hope to hear from you soon!

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I really appreciate the kind words. It took me sometime to get to this point. I went through some tough times, but it made me a stronger person. If I can help in anyway let me know.

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I'm sure! Most importantly, you kept at it, enduring all of the challenges put before you and now can use all of the knowledge and steps to help some poor frightened soul to. reach out and put them at ease in tbe best way that you can.

That ability is a blessing !

Yes, you are amazing.... :)

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I would do word hunts and other word games, but since my fistula is on my left arm it’s not easy. I also listen to music, watch sports and movies.

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Thank you for sharing!

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i just recently joined a facebook group...natural kidney journey...everyone who has ckd needs to join this group...i have been eating the way that is outlined in this group since the beginning of march...i have lost a considerable amount of weight...i have gotten off my blood pressure meds...losartain and hydradraline...and a diueritic lasix...i have been working on getting rid of my diabetic med from 2 times aday to 1/2 a day and sometimes not even that...i was a stage 4 ckd at 26 now i am stage ckd 3b at 41...i have gained 15 points...it is similiar to vegan but you cut out sugar...oil...salt...potatoes...tomatoes...no processed food at all...mainly a plant based diet... water and herbal teas are fine...low potassium...low phoshorus...i feel really good...the people who started this group were able to get her husband off of dialysis...and he has been off of dialysis for 14 months...there are a couple of people onsite who have accomplished that...others are raising their gfr's dramatically...all with diet...it is a great group and i am so thankful that i found them...i mean 15 points is terrific for just a month of dedication...i am working to get to stage 2 or better...now this is my experience with this way of eating...everyone is different but i found out i had ckd not because my doctor told me but that i looked at my labs...if you are really serious in having better kidney function at least check out this group...

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