Stage 4 CKD

[ShellyC23]

Help! My GP called today to tell me that my eGFR is down to 17 - he is referring me to a specialist but meantime can anyone give me any tips which may halt the decline until we find out the cause?

[orangecity41]

Have questions ready for Doctor about appropriate diet for you. You can also get questions answered from National Kidney Foundation, kidney.org/nkfcares. Another good source of information is Davita. Please keep us posted. You have reached a good forum for support and information.

[RickHow]

Hello, It is hard to answer your question without any knowledge of your situation. Some things surprised me. That your doctor delivered such news over the phone. But even more is that he/she has waited for you to reach such a egfr level of 17 to refer you to a kidney specialist/doctor. But not knowing what your "usual" egfr level has been previously (the past months or couples of years) perhaps this is a quick, sudden drop. You have been stage 4 CKD (before this more recent exam) and you did not have a kidney doctor? And at stage 4 no one explained to you things you could have (should have ) done to slow your progression (diet, medications, scans to see if anything wrong could be repaired, etc.). Your situation seems so surprising.As example I am at stage 3 (bouncing back and forth between 3a and 3b). I have been seeing a specialist (kidney doctor) every six months minimum. Have been educated on diet, meds, etc., etc. Have my blood and urine tested at least every 3 months by the kidney doctor. Have had repeated scans (ultrasound and ct) of the kidney, urinary tract). So to read your doctor calls you to now (at this stage) refer you to a kidney doctor, is shocking. However, none of that can be changed now. So your plan of action should be, get the earliest appointment you can to meet with the specialist.

There is a lot to learn about a diet, but the specialist should explain that. In the mean time you can do basics such as keep well hydrated, avoid too much protein (not completely but don't consume excess amounts), monitor your blood pressure and keep it within normal ranges, try to remain active (at least walking a bit daily), avoid alcohol and soda, keep potassium intake within normal ranges, monitor salt and sugar intake.

Keep us informed. This must be consuming your every thought constantly. But you will find friendly, supportive people here to listen.

[Irelandy]

Hi Shelly, I too am at egfr 17 and at this stage you need to know was this a sharp decline or a gradual one.Do you have high blood pressure? That was what caused mine.

You will need to get onto a renal diet, cut out salt and drink 2ltr water daily

Davita is a good all round site.

Good luck and stay safe.

[Bassetmommer]

HI Shelly, There is much you can do. But the first thing is to discover the reason. It could be nothing, but usually, to have a CFR of 17, there was something causing it. So the next steps are to see a nephrologist. They will determine if a biopsy is necessary and what else like an ultrasound. He should review all your medications including over the counter, especially iburpofen, which is terrible for kidneys.

Meanwhile, get yourself educated on CKD. There is a ton of info here on this site, and the HealthUnlocked site sponsored by NKF. Join both. Then see about classes and information on the Davita.com site and National Kidney Foundation. This is so important to understand what is going on and what you can do to slow the progression.

[mmwsmall]

Hi Shelly, irrespective of what has gone on before you have started on a good path; your doctor has referred you to a specialist and you have joined a supportive community. I agree that you should write down all your concerns/questions before you see the specialist. Diet is very important in the management of CKD. Ask to be referred to a dietitian if possible to help you manage this. Watch protein, sodium, potassium and phosphorus. Much of the information out there can be confusing at times so limit your search to few trusted sources. Stay hydrated, stop smoking if you do and reduce alcohol consumption. Make sure you get enough sleep and exercise. Your mental health is important too. Make time to talk, I find meditation useful too. Don't despair, your health is your hands and there is much you can do to halt the progression of your CKD. Take care on your new journey

[ShellyC23]

Hi all, thank for your comments they have been very helpful. I would just like to give some background information if that’s ok.

I’m 56 years old, non smoker, normal weight and normal BP. I have also been insulin dependent for 10 years due to LADA. My eGFR has been hovering around 30ish for years. My kidneys are very small and over 50 years of taking medication for hypoparathyroidism has caused calcium to become embedded in the tissue of my kidneys. Unfortunately there is no other medication I can take for this condition which won’t cause or cure this. The only this we can control here is the actual dose.

I have been seeing an endocrinologist for many years however I did see a nephrologist some years back when a new medication caused my eGFR to drop to around 25. At that time he said he wasn’t unduly concerned as I saw endocrinologist every 4 months and they were monitoring all of my bloods so I would be referred to him again when (not if), things got worse.

After an appointment at the diabetic clinic early last month my level had dipped a bit so GP has been checking every couple of weeks. Two weeks ago I was at 27 so Monday’s news came as a huge shock.

Since then my GP has been in touch with nephrologist who suggested another blood test before Christmas and a referral sent in if it doesn’t go back up to over 20. My endocrinologist has also reduced my medication.

I’ve been wondering about symptoms though, because I have a long list of conditions and take a lot of medication, which of my usual symptoms are related to CKD? I guess that wanting to sleep most of today is probably top of the list.

I will let you know when the next results are in.

Take care

[HealthBuddyMelissa in reply to ShellyC23]

Hopefully, your doctors will figure it out and get you back to your baseline. What kind of a diet do you follow? Do you see a Nutritionist? I know you said you are IDDM with a normal weight. Are your blood sugars normal and hgb a1c? How much protein do you consume in a day?

[madonbrew]

Hello, It’s still hard when you hear it isn’t it, even when you kind of might be expecting it somewhen! I’m still behind you with an eGFR of 33, but each time it drops significantly it hits me a bit more.

I don’t know practically how to advise, but just wanted to send a hug! I’m glad your endocrinologist had been keeping an eye and I really hope your neph will be able to assist you with maintaining your eGFR at that level for as long as possible!

Take care!