Confused, please help

[Confusionckd]

Hi

I'm 29 and after going through a hysterectomy (ovaries left) back in Feb I thought I was going through menopause so requested a blood test. This came back fine apart from my kidney function, so got retested a few weeks later and called in to see the GP.

Was told my creatinine was 103 (way too hight) and my gfr was 55 (way too low). He said these levels you see in a 75+ year old. They are concerned and sent me for a scan of my kidneys a week later.

I had this a few days ago and they told me my kidneys are very small (used the words "child sized").

I called the Drs this afternoon and they said they've had my results but they are discussing with another doctor and they will call me tomorrow to discuss an appointment and what to do next.

As you can imagine I am terrified. What does this all me?

Does this mean my kidneys are shrinking because they don't work?

How quickly does kidney function decline?

Will I need dialysis or a transplant?

Sorry for the super long post but I just cant sleep with worry and dont know where to look for info as you know what the net can be like, always worst case scary stuff and no solid advice.

[Nicolala]

Good morning. I know all this is terrifying for you, but try not to panic. I know that's easy for me to say. A gfr of 55 is rather on the low side and may indicate the early stage of kidney disease, but that does not necessarily mean that you will go on to have kidney failure or need dialysis of any sort. So take a step back...and breathe. Your gp may refer you to a nephrologist (kidney specialist) for further investigation or might wait and monitor you for a while through regular blood tests. He sounds like a good gp. You have youth on your side too. I was 16 when my kidneys began to fail. Now 47, been on dialysis for 28 years and I work and have a good life! There are things you can do to help your little kidneys but please don't start googling and following strict diet regimes..you don't need this at this stage. Drink water, avoid salty foods and keep an eye on your weight. Take gentle exercise and try to sleep. Life may have thrown you a bit of a curve ball, but it's not the end of the world. Certainly not yet anyway. Good luck and take care. X

[DIY12 in reply to Nicolala]

Hi

Have just read your post. So you have been on dialysis for 28 years? That is reassuring because whichever website I am reading it says dialysis only increases life expectancy by 10 years! I am worried I will get to that stage with a GFR from 70 to 62 in 6 months.Dr seems baffled!

[Nicolala in reply to DIY12]

Don't believe everything you read! Everyone's experience is different, but I know many patients past the 10 year mark. 28 years isn t common, but I'm not going anywhere yet. Dialysis is just something I do; it doesn't define me.

[birdsallinmyhouse in reply to Nicolala]

Very nice response.

[Mgt8]

Hi

Excellent advice from Nicolala,

I hear that over 60 egfr is normal so you're not far off that.

I was diagnosed at 25egfr and it still took years for me to get to needing dialysis.

Some people never need dialysis as their kidney function never gets that low....so do try not to worry too much.

Keep an eye on your blood pressure, avoid nsaids like ibuprofen as these can both effect kidney function.

Have your regular blood tests, see your gp and get on with enjoying life....

Wishing you all the best,

Mgt

[lowraind]

Confusionckd,

You do ask a lot of questions, but most of them cannot be answered here, but rather by those in the medical field, and sometimes, even they are not able to answer them completely. Yes, a GFR of 55 is low for someone who is 29 and your Creatinine level is very high.

Kidney decline can sometimes be helped by diet, and it will behoove you to get that information from a renal dietician. There are also many sites available to help you decide what you can and cannot eat. Once you get more info from your doctors, it is a good idea to educate yourself to the best of your ability so that you can best help yourself. Yes, there is a lot of scary stuff on the internet, but there are also reputable and helpful sites:

National education, support and advocacy organizations:

• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.

• Renal Support Network provides many support and advocacy services including a phone support line.

• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

• National Kidney Foundation provides a portal for patients too.

I personally would take steps to improve your diet, if that is what is needed. My personal philosophy is, if at stage 4, they are going to tell you to restrict certain foods, why wait until you get to stage 4. If you adjust your diet now, limit the amount of sodium, potassium, phosphorous, and protein you take in, this will help your kidneys to function better. If you are so inclined, Mathea Ford has several books and a website to help in this area. Two of her books that have been helpful to me are: Living with Chronic Kidney Disease--Pre Dialysis and Create Your Own Kidney Diet Plan.

Good luck, and please let us know what the doctors tell you. Try not to worry overmuch, the stress is not good for you.

lowraind

[KatieQ]

Dear confused... if you are serious about helping your kidneys, the best thing you can do is follow a renal diet. There are several out there and they are all pretty good. Also, look for a book written by Lee Hull who has several seggestions available for people like us. God bless you .

[Confusionckd]

Hi all.

Thank you all so much for your advice so far. I have spoken to the gp today and although my kidneys are smaller than the average adult they aren't majorly small (told 10-13cm is normal mine were 8cm and 9cm).

I have to have bloods repeated again tomorrow by 2 and he will ring me the following afternoon with the results and a plan of action.

Your advice on diet I have heeded and have cut down on many things.

I struggle to maintain my weight at the best of times so am struggling a little. I'm only 5ft 4in but barely 8st at my heaviest so finding it a little difficult in that respect to cut things out but will find my way with it.

I have however given up smoking 5 days now woohoo as read that helps but I have been wanting to for a while but this has given me that extra push to do it.

Another blood test but thankfully a short wait and will have more to update soon.

Thank you all again i really do appreciate it