GFR 33, for 33 year old: I have been... - Early CKD Support

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GFR 33, for 33 year old

anoopkm profile image
12 Replies

I have been given the shock of my life the other day by my nephrologist - that my kidney is only 33% functional:(. I am 33, male, from India living in Sweden.

I am still struggling to come in terms with it. I was rather unfazed when the doctor broke the news to me, but that was more because I wasn't very much aware of the criticality of it. Now that I read about it more on the Internet, I feel a ton more worried, and feel like i should have asked a lot more questions to my doctor and I should have been told a lot more things by him.

How bad is really a 33gfr for a 33 year old?

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anoopkm profile image
anoopkm
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12 Replies
rups_3 profile image
rups_3

I wouldn't worry too much, you should have about 5 years before you need a transplant. The Dr's will give you meds to slow the process down. Just watch your salt and potassium intact in food. Try not to allow stress in your life and enjoy life. I was in the same boat as you 7 years ago, I had a transplant in Jan 2014. Touchwood, I'm doing really well - good luck x

anoopkm profile image
anoopkm in reply torups_3

Thanks, I must say what you said did really make me feel better - 5 years is really long time, so I am gonna chill. The funny thing is ever since I have been told I have a bad kidney, I started experiencing every symptoms I read about on the internet - well, I must have had this over quite a long time, and though its gonna do down from here, It can't be very different from how it has been. If anything its probably going to get better in the immediate future, with the meds and extra care I put on the food I eat. So I feel real positive!

rups_3 profile image
rups_3 in reply toanoopkm

I'm glad you feel better after reading my reply :)

From the day I was diagnosed til the day I was transplanted, I never felt unwell. I even questioned the surgeons before being wheeled into surgery if I really needed it. I honestly felt well and healthy. I was reassured many times I definitely needed the transplant even though I felt "normal". Don't read too much on the net, other then reputable forums like this and Government websites.

Speak to a Nutritionist, I'm a British Indian living in London. Indian food is full of oil and salt, so start refraining it from your diet (if possible). No more processed food and take-outs...

...And lastly, live your life to the fullest everyday!

anoopkm profile image
anoopkm in reply torups_3

Thats really great to hear - I hope I wouldn't have to struggle either.

And Indian food is certainly off the charts - I wasn't having a lot anyway.

Keep rocking!

Debra1013 profile image
Debra1013 in reply toanoopkm

How are you doing, hope all is well with you I would really like a update on how things are going with you... I just found out Im stage 3 gfr 51 Im 48 worried to death . Like you doing all this reading on the internet I have all the symptoms

Hendon5 profile image
Hendon5 in reply torups_3

Hi my 84 year old mum was told yesterday she has only one reduced function kidney working at 32% You mention meds that can help slow things down can you please name them/go into more detail?

its all very new and the prospects of potentially further deterioration are a concern.

Many thanks

Imorsh profile image
Imorsh

GFR may also fluctuate and dont be surprised if this goes up a bit after you start on your diet.

Matt_R profile image
Matt_R

Try not to worry too much. EGFR does fluctuate especially if you've been unwell recently. You need a number of tests over a period of months to establish your levels. I was eGFR 42 a few months ago and I'm currently eGFR 60 which is pretty much considered normal. Don't think that you need a transplant as a default!! Get your nephrologist to confirm what stage you are but cut out salt, drink plenty of water (2l per day) and eat healthily.

Your doctor needs to advise you but don't think you're about to die or that you need a transplant.

Take care!

anoopkm profile image
anoopkm in reply toMatt_R

Thanks, It's getting better and better everyday (mentally) - was just an initial shock.

madonbrew profile image
madonbrew

Hi,I had a similar story-my eGFR was 41% when I first found out&I was 34.It dropped to 32%,then I got put on steroids and azathioprine -immunosuppressive drug, cos my body attacks itself. My eGFR went up to 49% but has dropped back down to 39% within a year.Im 37 now.

I think it's important you see a nephrologist so they can explain things & figure why it's dropped&give you medication to help it.

Please keep us updated.

Dee

anoopkm profile image
anoopkm

I have a nephrologist, it's been only one visit so far, I have been given some recommendations on the diet already, but not assigned a nutritionist as such. And they would do a renal biopsy to find the root cause. Not sure how that would turn out - hopefully nothing bad. Good luck, and will keep you posted.

bellefrank profile image
bellefrank

Hi there... I so feel for you and the shock you received....I had a dreadful shock almost 3 years ago and was literally given a year or less to live. This information was by phone at 9am and I was quite alone at the time...Not able to go into details but I have now been told by a head surgeon that my chance of recurrence is very low....My husband has grade 4 CKD, also a cardiac pacemaker and atrial fibrillation....I am slowly learning to deal with my fears and make the most of life. Thinking of you with such understanding but also optimism you will manage OK. Best wishes. Love Belle x

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