Scared.

[honeycombe1]

Gfr 31.

Now been told left kidney ,shrivelled with cysts.

Also Reflux? .

Duplex kidney.

Prem baby.

Overwhelmed by all this.

How do you know gfr numbers, good kidney and bad kidney.

Any answers greatly appreciated.

Thanks Dawn.

[cmcginily]

Hi Honeycombe1

Sorry to hear you are feeling scared. We have all been there. What is your diagnosis? Do you have simple cysts in the kidney with chronic renal failure?

Are the cysts just in the 1 kidney?

Were you a prem baby or do you have a prem baby?

eGFR numbers are taken from the blood test you had before your appointment, it gives an estimation of how the kidneys are working along with creatinine clearance levels.

Your doctor will be able to advise you of which is your functioning kidney or as you said which is bad and which is good.

You can stay stable at 31 for many years if you look after yourself, eat a healthy diet, maintain your weight.

Avoid caffeine, coke and coffee. Do not take any anti-inflammatory drugs like Ibuprofen or Nurofen as they really affect the kidney badly. Try to limit processed food and red meats. Drink plenty of water.

Hope this helps, we are all here to support you.

Best wishes Christine.

[honeycombe1 in reply to cmcginily]

Hi,Christine.

What I know.

Gfr 31.

Left kidney, cysts (didn't ask any questions)

Right kidney no cysts.

Consultant explained ,duplex, reflux,asked if had problems as a child, I said I hadn't .

I am a prem baby.

I just panicked.

I wish I could rewind my appointment, take it in and ask the right questions.

I am pretty good with my food and drink choices, I stay active, and watch my medication. Normally quite sensible, but have had terrible anxiety issues in the past.

Thanks for your support, early days, haven't got my head round it yet.

Dawn x

[cmcginily in reply to honeycombe1]

Hi Dawn It is awful when you get news you do not expect or understand, Just try to take it all in slowly, blood pressure control is very important. Have you tried Yoga for your anxiety levels may help.

Simple cysts in kidneys are quite common, when are you seeing the doc again?

Christine x

[honeycombe1 in reply to cmcginily]

My first appointment to see the consultant was in May.

I have just had my 2nd,different consultant though.

Next appointment in

November.

Thank you so much .Dawn x

[rabbit01]

Hi there. At egfr 31% you are at late stage 3 and on the edge of stage 4 Chronic Kidney Disease (CKD). I am at stage 4 with about 20% egfr (kidney function remaining). You can only determine your egfr numbers through blood tests and I would guess that with 31% kidney function the docs will be taking blood tests and monitoring you every 3 months or so. I would also imagine that they will refer you to a renal dietician who can look at your other blood characteristics and advise on diet changes. I see Christine has already given you some great advice on what to eat and what to try and avoid. I echo this advice as it is what I have been doing and in my case my kidney level has actually improved from 17% since being diagnosed in April this year to 21% as of my last blood test in late July. It all came as a shock to me as I was only having a routine medical so I can imagine how you are feeling at this time. Try not to worry and reach out to this forum with questions as they are all very friendly and provide some good advice. All the best. Warren

[honeycombe1 in reply to rabbit01]

Hi,Warren.

Thankyou for your reply.

Yes,I do think I will be monitored every 3 months, no dietician mentioned as yet .

But I am making a list ,I will be prepared on my next visit, so yours and Christine's advice has been Invaluable.

I hope you continue to see your numbers rise and stay well.

Dawn

[bellefrank in reply to honeycombe1]

Hi there, I know exactly your fears and can only tell you what my husbands Nephrologist said last Friday. First of all try not to panic, these poor levels can be reversible or at worse stay static for a very long time. Hubby has normal blood pressure which I gather is something that needs to be monitored. I have had excellent advice from Christine Jjlinden, Phillen and agree with Warren too. There is nothing to match personal experience which is often so good and positive. Keep in touch. Best Wishes, Belle

[honeycombe1 in reply to bellefrank]

Hi,Belle.

Thankyou so much for replying .

Everyone has been positive and well informed, it is nice to be able to express my fears.

I don't want my family to worry.

I hope your husband keeps well.

Dawn.

[bellefrank]

Hi Dawn, hope you are feeling a little better to-day. My husband went for blood and urine test this morning, had a scan last Friday and this Friday see the nephrologist again for results and hopefully a plan to help keep well. I so understand you not wanting to upset your family, we are the same, real mother hens protecting her chicks.!! We were told not too worry too much about figures, percentages etc as they can vary day to day, maybe dehydrated before the blood test. Perhaps listen to your body as I try to do not always successfully, if tired an hours rest can work wonders or a walk on a decent day. Cheerful company also helps as laughter is a good medicine. Chat soon, best wishes, love Belle x

[honeycombe1]

Thanks Belle for your kind words.

I am struggling with all of this, my head is all over the place, it's like your brain won't shut off!

But,I have just decided to go out for a walk / run across the fields.

Just for an hour.

Then collapse in a heap when I get back. Ha Ha.

Ignore my warped sense of humour!

I hope your husband's visit to see the Nephrologist tomorrow ,will help you both.

Dawn x

[Jjlinden]

Hi Honeycombe, I'm also still reeling from the totally unexpected diagnosis! I'd never even heard of CKD until this. And I'm the same when it comes to listening to what the GP tells you. It goes in one ear and out of the other... My GP very kindly gave me a printout of my blood test results. It's really useful as everything I have learned about CKD is from all the lovely people on this site and I've been able to deduce things from the test results that the Dr didn't tell me or I just didn't take in at the time. I'm interested that you were premature. Another thread on here has mentioned that there have been studies, you can google them, that link low birth weight with a predisposition to CKD. I was not prem but only 4lb at birth. I'm wondering if this and my use of NSAIDs did it for me as none of the other factors apply, blood pressure, diabetes heart disease etc. as everyone else has said, try not to worry, if you take care of yourself (just think of it as a really good reason to do this), arm yourself with a question sheet when you visit the doc., and ask for a printout of your results. All the best, x

[honeycombe1]

Last year my Dr told me that I had Ckd stage3 (35).

He didn't think that was a big deal.

But,came home, Googled it.

No big deal!

I asked for a referral to see a Renal

Dr.No point yet!

6 months later.gfr31.

I found on Google, the procedure that GP'S follow! !

I have also read about the link with low birth etc.But unfortunately it doesn't make any difference now,

Same with BP,painkillers etc.

I have an A4 sheet with loads of questions for next time, I will be more prepared.

I'm sorry you are going through the same problem, but in away we can help each other.

Good point.

Everyone with kidney problems

have fantastic hearts!

Thankyou. Dawn x