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Naughty Kidneys

Becca6510

Well-Known Member
Messages
63
Hi All.

I’m looking for some support and maybe even reassurance. I have proteinuria and my last blood test showed my EGFR has gone to 42! And it has stayed at 42 since July last year. The doctor said it wasn’t time to worry and if it gets below 30 she will refer me and didntgove menmuch advice on how to handle this. All day I’ve been so down and upset, I feel like I’ve been handed a death sentence. I’m 27 in a serious relationships and we’d love kids one day and I just feel my whole future has been stripped away from me and I’m struggling massively. I’m going to increase my exercise, fluids and reduce salt on my diet and hope it all makes a difference. Any kind words anyone to calm me down and make me smile?
 

How has your diabetes control been???
I have been type 1 for 48 years, never really looked after if until around 5 years ago when I was diagnosed stage 4CKD! Kidneys are working at 21%. In 5 years of VERY good control they are still working at 21%. My Urology Dr has said as long as I keep my diabetes under control then they should stay at 21% for the foreseeable future.
I thought exactly the same as you 5 years ago
 
I have been 10 years diabetic. I suffered with diabulmia for the first 6 years so had terrible control, I didn’t care what happened to my health as long as I was thin. The PST three years I’ve changed it all around, got a stable hba1c it was 58 unfortunately due to home circumstances and stress it’s crept up to 65 at my last one, but all my complications have come to light once I have looked after myself. I regret being so narrow minded but i was 17 and felt very alone in it all.
 
Sorry to hear about your kidney issues @Becca6510 - unfortunately Diabulimia is a hidden condition and as you feel no pain you don't realise what's really going on, yet the damage caused can be catastrophic and only realised later in life. There is so much pressure on young folk to look a certain way, if only we could take social media and media in general out of the equation then we could all be happy in our own skin and not feel pressured to act/look a certain way. What's hard about this condition is that many have it and live in denial about what damage is being caused, I believe it would help those caught up in it to learn from those who've come through it and what impact it's had on their life, so talking about it is so important.

The good news is that with good and stable control the complications can be suspended and often reversed so please don't beat yourself up over what happened in the past, concentrate on keeping your control as good as you can, lean on your diabetes team more, getting your HbA1c down and controlled is a good plan to help keep you focused. Look up Dr Berstein, he's type 1, in his 80's and has reversed his complications, his approach may seem extreme to many however it's worked well for him and he's living well for it.

Any idea why it's crept up and are there are any changes you can make to help change things ?
 

Hi there! I had emergency surgery March last year where I sustained AKI whilst in hospital then the day after it increased to 70 and it must of come back down and never improved? I feel a little dissapointed it’s been this way for a year and no one has told me. I researched what you recommended, he seems like a real fighter, I just don’t feel as lucky. Feel a bit doomed at the mo!
 
I think if you do some research on him he does have alot wisdom and he is an optimistic guy, really we all have to be optimistic, it's all about getting back on the horse and getting in the saddle again, we all get knocked off at times, I found my first year with t1 pretty dark, I couldn't see a light at the end of the tunnel and felt quite alone, i've got through that but am always mindful of where i've been and where I am now and don't take anything for granted.

Dust yourself down and give yourself a good talking to, you can do this and you will be ok, but don't let it take over your life and let it get in the way.

Please talk to us though, if you need help sorting out your HbA1c then tell us what's happening right now so what insulins are you taking, what's your daily readings like and see if we can offer any pointers ? Have you done DAFNE yet ?
 

Thank you for your kind words and support. I’m on MDI at present (fiasp and lantus) but I have just been approved funding for a pump! So just trying to choose the right pump for me. I know what you mean about optimism it just the control freak inside me feels so lost! Hoping the pump will provide some more stability as I have had a stressful time recently and they’ve been all over the place!
 
@Becca6510 That's great news about the pump, I only had the 640g Medtronic offered me but would of taken anything tbh, it's really helped me greatly, still takes effort to tweak and adjust, but once you settle in with the adjustments it is a great help. I think i'm a bit of a control freak too which goes against the very being of t1 as you can do the same thing twice and get different results each time, maybe try a bit of meditation or exercise ? I exercise alot and that helps me cope better mentally with all the trials and tribulations t1 throws my way each day !
 

Haha! Well funnily enough I’ve booked back on my boxing class tonight! Don’t feel much like it, rather sit in front of the telly and wallow but hey it’s not gonna help is it?! Hopefully take some frustration out on the poor unsuspecting person who spars with me
 
That sounds like a brilliant plan I feel sorry for your sparring partner tonight !!

Don't wallow, get out there, fight any urge to cave in, life is for living and you'll feel so much better for it.
 
Hi @Becca6510, that is a shock for you.
One thing to remember is that a number of people have reported complications getting worse initially after they really tightening up their diabetes control and then as they continued with good control the complications stared to reverse. A common example is with eye complications - and i assume you have had your eyes checked very carefully as well as your kudneys?
Not saying that all complications reverse completely for everyone necessarily but many get some reversal. @Mel dCP has one such story.
So i would be saying that there is room for some optimism.
Personally Dr Bernstein is the person who has helped me the most in all the 52 years i have been on insulin and I personally rate his 'Solution' incorporating his type of diet as more important overall than my insulin pump, which i rate as second most important.
You have an opportunity to get things as right as possible. And that means comparing diets, management to see which sctually works best, not anecdotally, but from solid research.
Anything less and you would be deceiving yourself.
You Are of course free to do what you like, but having this shock is a rude reminder.
I will leave it there, wish you all the best in getting your pump, and please keep posting and asking questions, whether it be about pumps, diets, what i or someone else has written.
You have a lot to deal with. Step at a time!
 

Thanks so much for your advice. I do try and limit my carbs to once a day and small amount to none but I have been a little lapse recently. I will tighten my carb intake looking at dr Bernstein’s method. I am now also considering lowering my protein intake as that could be affecting my kidneys. It’s a bit overwhelming but I am appreciating the support from everyone. I think it’s amazing you’ve been 52 years on insulin I have convinced myself that I will not live very long with this disease, especially now I am seeing complications. You give me hope
 
Please ask your doctor about protein intake. My understanding is that one's kidneys need to be quite badly off before protein needs restricting, so please take their advice.
Following Dr Bernstein might involve more than one meal a day, as he stresses that we need all the important minerals and vitamins too. He is not a fan of meals closer than some 6 hours apart, but there needs to be that balance of food to meet all needs of the body. Perhaps a dietitian could work with you to ensure that you are taking sufficient nutrients in such a diet?
 

Yes I have been thinking of seeing a dietician but the one at my local centre seems a bit... dippy
puts me off! As I want to get serious. Could you private message me the info you have on dr Bernstein’s methods? I have done some research but haven’t found loads
 

Becca, I'm not T1, so won't comment on anything to do with your diabetes management, however, as far as Dr Bernstein is concerned, his book Diabetes Solution is available in many forms, inclding several free .pdf files, although you'd have to check out the sources for viruses etc.

In hard copy his book is on Amazon, but he also has lots of content on YouTube, which is always an easy place to start.

Good luck with it all. You've got a lot going on.
 
I've been T2 for years now and on insulin for quite a few as well. I was trying to do the lchf diet with success only to the extent that now even small amounts of carbs seem to drive my BS up, although almost zero carbs don't bring it down to what I would call an acceptable level (5 - 7), my readings are usually around 8 - 9. Not massively high I know, and my Diabetic nurse seems to think this is great control, but I don't, especially considering the effort it takes to reduce carbs to a minimum. I haven't lost weight on it either - possibly to do with fluid retention.

Now I wonder if I am doing the right thing because the only bit of me that was working (my kidneys) have decided to go wrong. I don't actually understand the abbreviations or how kidneys behave but my GP tells me that my creatinine level has been falling since December 2018. The reading then was 45, then 40 in January, then 32 in March and 30 in April. So, falling pretty fast I think. But I have no advice on what this means and what, if anything, I should do about it. I just wonder if eating too much protein can have anything to do with it. No point asking the health professionals here - they don't approve of low carb anyway. But if I continue to low carb and try to reduce protein, there won't be much left. I suppose, if I cut out as much as possible, I might eventually get to enjoy vegetables, out of desperation, but I probably have to have some protein. How much? Who knows?

(A bit fed up and concerned right now - I did want to outlive my father and grandmother - 87 and 97 - but I'm beginning to suspect that I won't.)
 
Him sorry to hear of your troubles. I'm not much into guidelines, but the NICE guidance is here , and it is useful for you IMHO:-

https://www.nice.org.uk/guidance/cg...ns#classification-of-chronic-kidney-disease-2

If your e GFR was 70 last year and it is now 42, then that is more than a 25% drop in 12 months and NICE says you should see a specialist. One is not allowed to recommend treatment or diagnoses here, and one should never be disparaging of other healthcare professionals cos we don't always know the full story, but if I was you, I would see a different GP, tell him/her about your drop in renal function and proteinuira and ask to be referred to a specialist. They might prescribe drugs such as ACE inhibitors that preserve renal function, and they would look for anything else that might be impairing your renal function,

I would go for it, rather than wait for your renal function to worsen. With what you have been through, you can sort this.

Best wishes
 
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Just to say things can get better. My kidneys shut down at one point due to acidosis. That was in 2011 and my eGFR never got above 42 after that. You can imagine my surprise when my blood test at the end of Feb this year said my eGFR had risen to 60. I nearly fell off my chair! Hope things get better for you too
 

That made me smile so much, I’ve been so active these past two days, gym loads, no salt, eating well, better control with all the activity. Just hope they stay stable or maybe gonup. I hope I’ll be as lucky as you! Are you type one?
 
Becca6510 said:
That made me smile so much, I’ve been so active these past two days, gym loads, no salt, eating well, better control with all the activity. Just hope they stay stable or maybe gonup. I hope I’ll be as lucky as you! Are you type one?
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No, I am a Type 2. Had Diabetic Burnout a couple of years ago too but have gotten back on the horse so to speak! I was diagnosed in 2007 but was probably Diabetic long before. Its a constant battle so know how you feel. I am unlucky enough to have a few complications due to my diabetes (Macular changes, Peripheral Neuropathy to name a couple). Just keep doing what you're doing. Try to keep positive and know that in the long run every little victory will help keep you healthy in mind and body
 
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