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CKD

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C

CarolK

Well-Known Member
Relationship to Diabetes
Parent of person with diabetes
hi there ,
My son is type 1 and is hoing through tests for CKD St the moment . It is likely be has it from previous egfr results and I obviously worried sick . Has anyone here had any experience of this ?
Thanks in advance for any comforting thoughts x
 
I hope all is well with you and your son. Sorry I can't offer advice of any kind but wanted to send good wishes
 
CarolK said:
hi there ,
My son is type 1 and is hoing through tests for CKD St the moment . It is likely be has it from previous egfr results and I obviously worried sick . Has anyone here had any experience of this ?
Thanks in advance for any comforting thoughts x
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Hi CarolK, I'm sorry to hear this :( I believe member @Redkite has experience of this with her boy - hopefully she will be along to share her experiences.
 
Hi Carol,

Sorry to hear this, must be very worrying. Not sure if it's the same issue - my son has type 1 diabetes and a few years ago (approx 3 years after diagnosis) started passing protein in his urine in increasing amounts. Long story short, there is early nephropathy (diabetic kidney damage), which is very unusual in children and so soon after diagnosis (his diabetes control has never been awful, though it's not approaching the normal glycaemia of someone without diabetes). He had ultrasounds and a DMSA scan to check for structural defects. He has never had a EGFR test done (I think his blood results are still in normal range, so the only "marker" is the microalbuminuria). He takes an ACE inhibitor to try and reduce this.

What hospital are you under? Our local hospital were absolutely dreadful and did nothing whatever to investigate the issue. We moved his diabetes care to University College London Hospital (we don't live in London but it's worth the journey for better care), and they referred him to Great Ormond St Hospital renal unit. If we hadn't been satisfied, I would have asked for a referral to the Evelina Hospital which another parent recommended for kidney problems.

I hope you get some good news from your son's tests. Do take a list of questions with you, and a notebook to write down everything they say - it's hard to remember stuff when you're shocked and anxious. xx
 
Thanks redkite,
I'm preparing myself , I think from his egfr results he has stage 3 kidney damage . I'm normally a glass half empty person I'm afraid so am trying to be upbeat about it for him . His control hasn't akwsys been great , and I spent many if his teenage years nagging him , terrified about just this happening . I'm hoping that he will take stock , they have offered him a pump , which he said no to , but I'm hoping he may reconsider , after he has seen the kidney consultant .
 
CarolK said:
Thanks redkite,
I'm preparing myself , I think from his egfr results he has stage 3 kidney damage . I'm normally a glass half empty person I'm afraid so am trying to be upbeat about it for him . His control hasn't akwsys been great , and I spent many if his teenage years nagging him , terrified about just this happening . I'm hoping that he will take stock , they have offered him a pump , which he said no to , but I'm hoping he may reconsider , after he has seen the kidney consultant .
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How old is your son, Carol? I'd assumed he was a child, obviously if he's an adult it was no good me recommending the Evelina or Gt Ormond St!

If he does have stage 3 renal disease, it's not too late to stop it in its tracks. He can't repair the damage but he can try and prevent it worsening. How is his blood pressure? This will probably need controlling with ACE inhibitors if he isn't already on them. He also needs to be careful with his daily salt intake (this is really hard in practice - even though I cook most things from scratch and never add salt to my cooking, there's added salt in bread, breakfast cereals, cheese, processed meats like ham etc.). Never have pizza for dinner if you've had bacon for breakfast!

Re his diabetes control, he will have a much better chance of good control if he does go on the pump. Can you persuade him to give it a try? He can always revert back to injections if he hates the pump (but I know of only one person who has done that, the vast majority would NEVER switch back to injections!).

I know how you're feeling - it's so depressing and worrying. All you/he can do is get as much advice as possible from your healthcare team, and try to keep tight control of the diabetes and blood pressure. Hope he will be motivated to do this. xx
 
Hi Carol

I've got CKD stage 3 with microalbuminuria in my urine, my egfr results hover on the 3A/3B border in the mid 40's but the results have remained stable for about the past 20 years now. I take Lisinopril to protect my kidney function and my blood pressure is luckily low anyway. My kidney function started to be affected in my 20's and it terrified me but so far it has remained as something I am very aware of but it hasn't progressed any further.

Although it is very frightening when things start to go wrong please don't despair. ACE inhibitor drugs are usually prescribed to limit blood vessel damage and keeping blood pressure under control is vital. I hope the renal consultant can help and your son considers using a pump to help his control. I wish you and your son well.
 
Flower said:
Hi Carol

I've got CKD stage 3 with microalbuminuria in my urine, my egfr results hover on the 3A/3B border in the mid 40's but the results have remained stable for about the past 20 years now. I take Lisinopril to protect my kidney function and my blood pressure is luckily low anyway. My kidney function started to be affected in my 20's and it terrified me but so far it has remained as something I am very aware of but it hasn't progressed any further.

Although it is very frightening when things start to go wrong please don't despair. ACE inhibitor drugs are usually prescribed to limit blood vessel damage and keeping blood pressure under control is vital. I hope the renal consultant can help and your son considers using a pump to help his control. I wish you and your son well.
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CarolK said:
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ThAnkyou both so much for your replies. Flower I feel so much better reading your story - my son is 26 , has had type 1 since he was 14 , and although I don't have the day to day care as he is obviously a grown man , he still lives at home , and I'm afraid the worry doesn't stop just because he is an adult.
I really hope I can persuade him to try the pump , and that he can keep the damage from getting any worse . Flower , do you have to follow any particular diet ( re the potassium levels ) ?
 
I don't need to avoid any particular food or limit potassium as my renal function has been stable for a long time. I don't use salt in anything I cook. The main things I am told to do are keep my HbA1c as good as I can, keep my blood pressure normal, take Ace inhibitors and have regular egfr blood tests.

I was diagnosed aged 12 and my complications started about the same age as your son in my mid to late 20's. There are lots of things that can be done to limit progression - medication plus all the normal diabetic management stuff we try so hard to do. I immediately thought I was on a fast track to dialysis when my egfr results started to fall but touch wood I've managed to put it on long term hold. I hope thinks work out for your son and you both get some reassurance.
 
My son started leaking protein aged only 7 years. :(. He has never had an EGFR test - should he have had one? I'm going to ask at his next renal appointment in January.
 
An egfr test is always requested on my pump clinic review, I just assumed it was one of the standard tests along with HbA1c, etc. There is a calculation that is used to work out egfr based on creatinine levels, age, weight, etc so maybe your son's clinic requests creatinine and works it out from that?
 
Flower said:
An egfr test is always requested on my pump clinic review, I just assumed it was one of the standard tests along with HbA1c, etc. There is a calculation that is used to work out egfr based on creatinine levels, age, weight, etc so maybe your son's clinic requests creatinine and works it out from that?
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I will be sure to ask! It's not written on his annual bloods form. He attends a different hospital for renal issues and has never had a blood test there. I bet each team is assuming the other has covered this.....
 
Flower said:
I don't need to avoid any particular food or limit potassium as my renal function has been stable for a long time. I don't use salt in anything I cook. The main things I am told to do are keep my HbA1c as good as I can, keep my blood pressure normal, take Ace inhibitors and have regular egfr blood tests.

I was diagnosed aged 12 and my complications started about the same age as your son in my mid to late 20's. There are lots of things that can be done to limit progression - medication plus all the normal diabetic management stuff we try so hard to do. I immediately thought I was on a fast track to dialysis when my egfr results started to fall but touch wood I've managed to put it on long term hold. I hope thinks work out for your son and you both get some reassurance.
Click to expand...
You don't know how
 
You don't know how relieved I am to read your story flower - I know that every individual is different but it gives me hope - as you said I am sutomsticslly thinking the worst! to redkite , I don't know whether children's and adults bloods measured differently ??? My son has had an egfr test , certainly for the past few years , do definitely worth asking the question .
 
Flower said:
An egfr test is always requested on my pump clinic review, I just assumed it was one of the standard tests along with HbA1c, etc. There is a calculation that is used to work out egfr based on creatinine levels, age, weight, etc so maybe your son's clinic requests creatinine and works it out from that?
Click to expand...

the formula is :
Calc eGFR=186*POWER((Creatine/88.4),-1.154)*POWER(Age,-0.203)
 
I have the EFrg test (sorry iPad wants the e and f capitalised so I've given in) because I was in kidney failure when I was admitted to hospital so apparently I'll have that every twelves months now. They don't mark it on the form specifically but it does come up on the results, so best to check out whether they're doing it Redkite.

Carol I hope your son has better news than anticipated. He might be resigned to it being a huge issue, so perhaps letting him know there's hope will be enough to spark some different behaviour and get him to try a pump? Best of luck with it all.
 
KookyCat said:
I have the EFrg test (sorry iPad wants the e and f capitalised so I've given in) because I was in kidney failure when I was admitted to hospital so apparently I'll have that every twelves months now. They don't mark it on the form specifically but it does come up on the results, so best to check out whether they're doing it Redkite.

Carol I hope your son has better news than anticipated. He might be resigned to it being a huge issue, so perhaps letting him know there's hope will be enough to spark some different behaviour and get him to try a pump? Best of luck with it all.
Click to expand...

ThAnkyou so much kookycat - that's one of the best things about being able to speak to you all , it keeps me positive - and I certainly hope that you are keeping well !
 
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