Chronic kidney disease diagnosis and sca... - Early CKD Support

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Chronic kidney disease diagnosis and scared 😨

Caresagain profile image
12 Replies

Hello to all and thank you for all your informative posts! I'm a newbie to ckd but have been reading all your posts along with trying to educate myself to this disease. I see a nephrologist tomorrow, and I'm hoping to find out results on the renal ultrasound I had a month ago along with the stage. My egfr is 46 with a question mark? With all the symptoms I've been having for months, it seems I'm stage 4 and 5? I do have other diseases that might be making my symptoms worse but I'm hoping to find out more tomorrow. This is scary stuff and my anxiety is higher than ever! Depressed too but the anxiety is the worst with something like this. Thanks to all for the excellent reads. I'll post again when I find out more.

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Caresagain
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12 Replies
orangecity41 profile image
orangecity41

I was diagnosed with CKD at GFR of 55 and put on renal diet which has helped slow down progression. There is hope.

dizzydi profile image
dizzydi

Welcome Caresagain,

Sorry to learn of your CKD, but there are ways to try to help the function we have left and am sure many more will input on this for you too.

The best of luck for your coming appointment. Your Nephrologist will do all he or she can to help you and treat you the best way possible to try to keep your function going for as long as possible.

I note you said stage 4 to 5, where a EGFR of 46 is usually stage 3, but this can fluctuate, as a lot more is taken into account as well like other numbers to include your Creatinine, potassium, albumin and so on. You will soon get the hang of how it all works.

There are many causes for CKD, for example, maybe long term uncontrolled high blood pressure, or diabetes, and many more, your scan results could give more detail. In my case I am stage 4 at 20eGFR, where both of my kidneys on the scans shown up as damaged due to reflux kidney damage when i was younger, due to many kidney infections, and then suffering long term high blood pressure done the damage of the cells to my kidneys.

Certain medication can have an affect on our kidney function too, so your Nephrologist will make sure you are treated with the right medication you may require. Long term Ibruprofen use can have an affect on our kidney function, so best not to take them, where coming off that medication your function may improve somewhat.

Are you in the US or UK? I can try digging up the relevant eGFR/Creatinine chart to help you understand a little more of how this works.

Good luck and remember our function fluctuates daily ;-)

orangecity41 profile image
orangecity41 in reply todizzydi

Very good information. You are right can be many causes and our eGFR does fluctuate. It is a guideline. Good luck on your CKD journey also.

lowraind profile image
lowraind in reply todizzydi

I don't know about you, but my nephrologist gave me no indication of what I should do. At the present time, I am also still trying to have my GP set me up with a dietician. Unfortunately, too often, we have to look for ways to help ourselves. DaVita is a good site, but there is a lot available online and I have found that if you put in a food that you are looking to prepare, followed by CKD, you will be taken to may sites that provide information regarding the recipes, but also additional information. There is much we can do to help ourselves, but if the medical field does not give us the guidance, we are in the dark. We have to advocate for ourselves.

orangecity41 profile image
orangecity41 in reply tolowraind

You are correct being pro-active is very important, and to make sure of the credibility of the web site. Davita has been very helpful for me.

Bunkin profile image
Bunkin

Prayers for you as you start this journey. It's not an easy one but it is a manageable one. I've learned if you follow a good diet, one low in phosphorous, potassium, protein, sodium, exercise, drink tons of water and supplements you can slow the progression. I have maintained my GFR for over 2 1/2 years and I am stage 5. It's easy to become anxious and depressed. Try to keep yourself busy. If your mind is focused on other things, you train it not to be so anxious. Hope this helps. God can do anything!

JOJOSMITH123 profile image
JOJOSMITH123

Hi Caresagain..It's scary posting for the first time isn't it?. I don't have CKD but my mom does and I'm on this journey with her. I suffer health anxiety so it's been quite difficult for me to deal with. I have fainted twice so far..once in A&E when she was first admitted and the other day at the renal information day. Have you been to a renal information day? They do talks on lots of subjects including depression after diagnosis.Yoy can get access to a therapist. My mom is stage 5 and doing quite well with the renal diet so far..Good luck and keep us posted..😁

Caresagain profile image
Caresagain in reply toJOJOSMITH123

Hi and yes it's terrifying for me to post any time because my anxiety is just awful lately. I have clinical depression and anxiety and the depression is being treated but NOT the anxiety. No I never been to a renal information day because I only found this diagnosis out a month or so ago. I'm stage 3 ckd but my liver is failing due to HCV I've has for over 20 years. Couldn't take the medication they had way back then because it makes mental illnesses so much worse while on it. I declined therapy about a month ago but now that I'm overwhelmed with all my diseases, I think it's very necessary. My support team will set that all up for me. That's wonderful that you are doing all the right things to keep your anxiety in check so that you can be there for your mom. Isn't anxiety the worst! Keeps me from doing the things that I need to do. Thanks for responding and keep up the great support you are giving your mom. 😇

kithsirid profile image
kithsirid

gfr 46 is not ckd 4 or5 , go to "link glomerular filtration calculator , Davita "u will get many more links useful for ckd patients.

dont worry too much my gfr is 38 age 73,Avoid potasium rich foods , red meat , Go vegitarian

Drink enough water , aoid processed foods,Ready made bottled drinks are taboo.etc etc ,

Hpoe u will write me back,

Are u hypertensive OR diabetic ?

WISH U GOOD HEALTH

"wikibad@gmail.com"

Caresagain profile image
Caresagain in reply tokithsirid

Hi. I felt like I was in stage 4-5 because of all the symptoms I've been having. I'm in stage 3 but it turns out that I'm in end stage liver disease and that will be the main focus for now. I need to do certain things for the ckd but my medical team's first priority will be my liver. Just very stressed out about all this because I found out about the liver from the kidney Dr and he didn't seem overly concerned about the kidneys because of being in stage 3. Thanks for responding and I'll keep posting when it's about my ckd.

toeragthecat21 profile image
toeragthecat21

hi..if your egfr is 45 then this may last for 20 plus years or more..keep healthy .low fat diet..no red meat...no ibruprofen or any other nsaid painkillers...low salt diet..water intake only..lower weight if above 26 bmi..keep positive smile a lot good for you..all the best and take care.chris

Caresagain profile image
Caresagain

Hi and thank you for your reply. I was told by my nephrologist that I'm in stage 3 of my disease but that my liver is starting to fail due to untreated hep c. That I've had for 20+ years. There are things I have to do for my ckd, for example, eliminate calcium from my diet and stop taking my vitamin D3 because of atherosclerosis and kidney stones. He didn't put me on any particular diet other than cutting out the calcium. Also have more blood work and urine tests over the next few months, but I guess it makes sense to focus on my liver and not the ckd at this at time. My anxiety and depression have been terrible because of all this and makes all the physical symptoms seem so much worse. Also have coronary heart disease and lung disease so this is very overwhelming and so I guess my kidneys will have to wait. Trying to be a little humorous and I guess it's because getting it all out really helps. Thank you for responding and also reading this book. God bless you and keep smiling 😃

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