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Will diet make a difference?

PostPosted: Sun May 26, 2019 9:08 am
by Strega76
Hi everyone

I'm currently sitting with a gfr of about 14 which has been stable for approximately 6 months. I'm 42 and was diagnosed with IGA about 4 years ago and my ckd has been progressing slowly. I'm fortunate to have siblings who have offered to donate and am hoping for a pre-emptive transplant in the relatively near future - all going well. I have been lucky and had no major symptoms to deal with up until now except more recently noticing fatigue setting in. One thing i have noticed over the past few months is sore joints and general aching in my back, hips and pelvis. Even when rested in the morning, I wake up and struggle to stand up straight for a few minutes as am so stiff. It sort of feels like flu symptoms without the sickness. Is this likely to be a symptom of such a low gfr? I have also found that after a 30 minute walk, i feel the same soreness and stiffness. I was wondering if there was anything diet-wise i should consider that might alleviate this or whether its just what happens as your function drops gradually. Any advice would be most welcome :-)

Re: Will diet make a difference?

PostPosted: Sun May 26, 2019 2:25 pm
by MatthewC
Sorry I can't help with the diet question, but your symptoms sound pretty much the same as my brother's before I donated to him.

Strega76 wrote:One thing i have noticed over the past few months is sore joints and general aching in my back, hips and pelvis. Even when rested in the morning, I wake up and struggle to stand up straight for a few minutes as am so stiff. It sort of feels like flu symptoms without the sickness. Is this likely to be a symptom of such a low gfr? I have also found that after a 30 minute walk, i feel the same soreness and stiffness.


A year after the op my brother said on FB: "thank you for...being able to wake up when the alarm goes off - and feeling refreshed rather than feeling exactly the same as when I went to bed... for not falling asleep anytime after 3pm... for being able to eat anything I fancy... for being able to go for walks and keep up with everyone else...for not snoring any more!!... for being able to do more than one thing in a day - go to work, do jobs round the house and garden - then go out in the evening... for being able to forget what it was like to continually ache ...for ordinary everyday life back again!"

So I think yes, you do have the symptoms of a low egfr - I'm sure others will comment!

Stick with it - there is definitely life after transplant, and my brother got his back.

Re: Will diet make a difference?

PostPosted: Mon May 27, 2019 9:37 am
by Strega76
Thank you so much for your reply. Prior to Christmas, it felt like we were heading towards transplant relatively quickly but as my results have stabilised somewhat, everything seems to be on hold again. My family are keen to get on with it and understandably are confused as to why the wait. I'm concerned about how unwell I will feel as my function continues to drop as I am still able to work at the moment but I am tired, especially as I have two boys to run about after once I get home in the evening.

I'll be sharing your blog with my family, I've been reading it all morning :-)

Re: Will diet make a difference?

PostPosted: Mon May 27, 2019 11:58 am
by Thumps
I concur on the symptoms likely being related to low GFR. I was hovering around 15-20 for ages while we arranged my pre-emptive transplant. It's a long old journey but I've never felt better (now 11 years post-op!)

Re: Will diet make a difference?

PostPosted: Mon May 27, 2019 3:23 pm
by wagolynn
Something like 5-a-day diet is all you need, the idea being to keep your general heath good for the upcoming operation.

There are many diets on the internet claiming to heal sick kidneys but the medical view is it highly unlikely any of them will do any good and many will do harm.

Should you get onto dialysis, there are then restrictions on the amount of Phosphates, and Potassium intake, this due to dialysis is not very good at removing them.

Your symptoms are very familiar to anyone with CKD.

Best wishes.

Re: Will diet make a difference?

PostPosted: Mon May 27, 2019 7:20 pm
by Strega76
Yup. I was wondering if maybe certain foods might give me a bit more energy as some days I pretty much feel ok. A healthy 5 a day diet sounds the way forward as I try to stay as fit as possible, exercising on the days when I don't have to do much else. Thanks for your comments :)

Re: Will diet make a difference?

PostPosted: Wed Jun 05, 2019 8:00 pm
by ashmore_m
Hi I'm also gfr 14 39yrs old, diagnosed around 4 years ago, believed to be a birth defect but not entirely sure. I have tried to cut out as much red meat as possible, I did go veggie for 3 months as thought this may help me feel better but struggled to maintain weight. currently 10 1/2 stone. I have stiffness too and ache but also put that down to lifestyle (2 jobs, kids etc) I have trouble sleeping too and I have no appetite. My brother has been confirmed as suitable donor so i'm hoping to feel like superman post op! All the best

Re: Will diet make a difference?

PostPosted: Tue Jun 11, 2019 11:34 am
by Strega76
Thanks for the reply ashmore_m. It sounds like we're on the same timeline. I've just had my letter through to meet with the transplant team now that my siblings have been tested, so we'll see what comes of that. I had a really busy weekend with the kids which has completely floored me, however I recently compressed my hours at work so now have a Monday at home and work the other 4 days. I definitely have to factor in recuperation time now that I didn't used to in the past.
Hope all goes well with your op :)

Re: Will diet make a difference?

PostPosted: Tue Jun 18, 2019 10:15 am
by ashmore_m
Hi Strega76, I can definitely relate to the tiredness, I usually feel quite nauseous when I've over done it. I am working less hours too but my main problem is I work late so getting into bed at 3am at least three times a week. I meant to say in last post - the flu like symptoms you sometimes suffer from could be related to potassium levels being too high. I had this recently and had to pull over whilst driving, due to dizziness and general sick feeling. I now have levels back to normal. I do suffer from cramps in legs occasionally and the odd heart flutter, I wondered if you have those symptoms too? transplant date set for January 2020 all being well. Good luck with your transplant meeting, it always amazes me the incredible work they do!

Re: Will diet make a difference?

PostPosted: Tue Jun 18, 2019 4:19 pm
by wagolynn
Hi ashmore_m,

Have you told your GP about your symptoms particularly the heart flutters, your nephrologist will be concentrating on your kidneys not your general health.
You need to get your heart sorted if you are contemplating a transplant.

If you live in the UK, we do not normally eat sufficient high grade protein (meat) to cause any problems for our kidneys, you must eat sufficient protein for your body to function.

In America the consumption of protein is much higher, and therefore kidney patients there are often told to reduce their protein consumption.

Best wishes

Re: Will diet make a difference?

PostPosted: Thu Jun 20, 2019 9:39 am
by ashmore_m
Hi Wagolynn
Thanks for your message. Yes I have spoken with renal consultant and she said the flutters in heart are normal in last stages, I’m there next week for appointment so will get the full MOT again. When eating meat I try to go for joints of meat eg Sunday roast so I’m avoiding processed, although a little does slip in. Many thanks