suggestion... how about introducing ourselves??

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wagolynn
Posts: 1322
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

These web pages may help you. http://www.kidneypatientguide.org.uk/contents.php
And http://www.edren.org/pages/edreninfo/bl ... isease.php

These are reliable pages, you must always be sure of the source of any information on the web, there are some real cranks out there.

Drug cure - none that I have heard of, kidney function can be upset by trauma, and as a by product of other conditions, in these cases if the cause is eliminated the kidneys can recover.
Your kidneys may feel a rapid change in weight is a trauma.

Your Nephrologist will probably request more blood work in about a months time to work out what is happening, and other tests.

Diet - If you are in America you may be advised, by your Nephrologist, to reduce protein intake as in the USA people tend to have a high protein intake.
There are dietary requirements but these only apply to patients on dialysis, to help dialysis in it's weak areas, otherwise unless you are advised by your Nephrologist otherwise, move towards 5 portions of fruit, and vegetables, per day, and a portion of protein. (Google five-a-day for details)
This will improve your general health but will have little effect on your kidneys, your body will be able to cope better with the failing kidneys, and a transplant.
I say, 'move towards', because if you are not eating a high fibre diet, your gut needs time to develop the appropriate gut bacteria, lack of gut bacteria is the usual cause of wind (gas), when people make a rapid change of diet.

Advise your Nephrologist before you start changes, otherwise he/she will be trying to diagnose on a moving target.

Best wishes.
Balty
Posts: 2
Joined: Wed Nov 22, 2017 8:09 pm

Re: suggestion... how about introducing ourselves??

Post by Balty »

Thanks for taking the time to reply!

Diet--I've been told CKD patients should limit protein to 25g of protein per day and limit phosphorus to 800mg to 1200mg per day.

Have you ever heard of this sort of advice?
JMan
Posts: 3440
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: suggestion... how about introducing ourselves??

Post by JMan »

'The 'restricting protein' used to be the advice widely given. And it was then discovered to be a mistake.

I'd say don't excessively limit protein unless advised to do so, or bring up the question with your doc. For those on dialysis, some extra protein is actually beneficial as the treatment process can remove a certain amount.

The professionals blurb:

https://www2.kidney.org/professionals/K ... guide5.htm

See also https://www.kidney.org.uk/help-and-info ... ate-index/


You can find a lot more info here:
Eating Well With Kidney Failure, a Practical Guide and Cookbook
http://amzn.to/uoj87U

Eating Well for Kidney Health, Expert Guidance and Delicious Recipes
http://amzn.to/rYCcW2

Eating Well, Living with Kidney Disease
http://amzn.to/rEtgVb

Truly Tasty, over 100 recipes created by Irelands Top Chefs for Adults Living with Kidney Disease
http://amzn.to/va6Pln

Food With Thought PDF Download or printed copy for £2.50 via the NKF

http://www.kidney.org.uk/help/books/boo ... ththought/

Davita Recipes, an American website with many many recipes.

http://www.davita.com/recipes/
boz
Posts: 1
Joined: Sun Feb 04, 2018 11:00 am

Re: suggestion... how about introducing ourselves??

Post by boz »

Hi I'm david I live in scunthorpe I have stage 4 ckd and don't know much else, very scared about the future.
My gfr is 29 and thats all I know.
What's likely to happen from now on?, I'm a hgv driver.
wagolynn
Posts: 1322
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi boz,
Everyone is a bit lost to start with, try looking at some of the stuff on this site http://www.kidneypatientguide.org.uk/contents.php
It should give you a feel for what it is all about, make a list of questions for your next appointment, most of us forget to ask questions when in front of the doctors, the list should help.

After you have read some of the stuff on the site, you can try asking specific questions on here.

Best wishes.
Allie101
Posts: 1
Joined: Wed Feb 21, 2018 1:29 pm

Re: suggestion... how about introducing ourselves??

Post by Allie101 »

Hi, I'm Allie, I'm 48 and I'm from the West Midlands. I'm on blood thinners for life due to getting two dvts, one in each leg. I get blood tests regularly to check liver and kidneys. A few weeks ago I was called in to see the doctor with regards to my last blood test. I was told that my kidneys were functioning at 40%, put on blood pressure tablets as my blood pressure has always been high, booked in for blood pressure check and another blood test at the beginning of March. He also referred me for an ultra sound. I had the ultrasound last weeks and it showed ok. I've now had an appointment for the renal clinic, not sure what that will entail. Had blood pressure taken this morning and it was taken 4 times by which time it was spot on. First time ever.
zoey4chaz
Posts: 1
Joined: Tue Apr 10, 2018 2:07 am

Re: suggestion... how about introducing ourselves??

Post by zoey4chaz »

Hi, Just signed up new here, not sure how to use the site. My name is Charlie..female I had live donor kidney transplant Nov. 16, 2017 have lots of questions please advise how to proceed.
Thank You
wagolynn
Posts: 1322
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Welcome to the site.

Questions, just ask, if anyone knows the answer they will answer.
martinmufc
Posts: 2
Joined: Thu Apr 12, 2018 4:47 pm

Re: suggestion... how about introducing ourselves??

Post by martinmufc »

HI everyone

i was first diagnosed with asthma in 1983 due to constantly waking up at night breathless and swellings to my face put down to hey fever!.
I was rushed in hospital in sept 86 with a suspected heart attack at 19 due to fluid around my heart that showed up on a routine chest x-ray. I commenced dialysis in Oct 1986 and had a fistula fitted in March 87-still going strong today 31 years later.
I had my first transplant in Nov 1989 which lasted till Dec 2001,i then dialysised until July 2008 when i had my 2nd transplany which is still going strong thankfully.
I have seen the highs and lows over the years,from fantastic staff to sadly losing good friends, home dialysis, holidays abroad which saw me arrive for dialysis and nobody had heard of me! to water leaks at home,power cuts (why always when i was in dialysis),working full time and running a business.
One thing i've learned,never ever give up.

Martin
Prayerbone
Posts: 1
Joined: Thu May 10, 2018 7:43 pm

Re: suggestion... how about introducing ourselves??

Post by Prayerbone »

Hi my names Andy 52 , historical kidney problems from birth, and when I was 4..Been ok for years, but partner noticed I was drinking a lot and waking up in the middle of the night to wee, so had a blood test and was called in urgently eGFR of 17 :?

Sent for a scan last Thursday and was kept in over night left kidneys is basically finished , and right kidney obstructed had a stent and was sent home, asked to have follow up blood test, but still have a eGFR of 17.. Think the plans a balloon In tube if eGFR increases..

All a bit scary at present, not helped by the vagueness of surgeons aftercare grrrr getting Information been nearly impossible since my discharge..IE is it ok to work , how long before they would expect a increase etc etc

Odd thing is , other then a bad back and tired feel fine..

Just confused but hopeful

Regards
Andy
wagolynn
Posts: 1322
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

I am afraid they are as much in the dark as you...

It's all, very much wait, and see.

You could check your weight every 24 hrs, to see if you are shifting more pee.

Best wishes.
Nadia
Posts: 2
Joined: Fri Jan 11, 2019 10:33 am

Re: suggestion... how about introducing ourselves??

Post by Nadia »

Hello! I’m Nadia, 40, and was diagnosed with CKD only last May. I had seen a nephrologist before in 2015, but as my results were staying steady, I was discharged with no furthr action until things suddenly worsened a lot last spring. I was told I would probably need a transplant in about 2 years.

I am on immunosuppressants which have made this winter just awful for me because I have been ill almost constantly since November. If I could afford to, I’d just stop working because I have noticed I get ill only days after returning to work every single time. It’s exhausting.

I am looking forward to chatting with you all and learning more about how everyone gets on.
wagolynn
Posts: 1322
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi Nadia,
I hope you are seeing your GP about these illnesses that are stopping you working, the immunosuppressant dose may be too high but it needs a doctor to look into this.

Do you know the cause of your CKD?

Best wishes.
Nadia
Posts: 2
Joined: Fri Jan 11, 2019 10:33 am

Re: suggestion... how about introducing ourselves??

Post by Nadia »

wagolynn wrote:Hi Nadia,
I hope you are seeing your GP about these illnesses that are stopping you working, the immunosuppressant dose may be too high but it needs a doctor to look into this.

Do you know the cause of your CKD?

Best wishes.
Hi wagolynn,

I have IgA nephropathy and immunosuppressants were the best choice for now. That treatment may be temporary, though.

I have sought medical help a few times, but nobody seemed concerned at the time, which I found disappointing. I will keep at it if it continues.
wagolynn
Posts: 1322
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hi Nadia,
The dose required to slow the kidney failing down is an intelligent guess, and will tend to be on the high side, I was thinking if you could get a Dr interested they may try reducing the level.

Another approach would be to look at your diet, see if it can be improved, and light exercise, say 20mins brisk walk 3 or 4 times a week, trying to improve your resistance a bit.

As a side effect of kidney failure patients tend towards depression, and are easily tired out, and with general joint and muscle pains, these symptoms will come on progressively as the kidney function declines, the severity varies from person to person.
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