New to this and terrified. : I’m 33 years... - Early CKD Support

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New to this and terrified.


I’m 33 years old and I have always been healthy. I’ve had about 3 kidney infections in the past 7 years but nothing more. I was recently hospitalized for a kidney infection and they acted like it was no big deal to just spend the night and take iv antibiotics. They told me I have a large staghorn calcus stone and I have some calcium build up on both my kidneys. My GFR was 55. My creatinine was 1.2. My blood pressure has always been great. I’ve been googling and now I’m scared to death. Do kidney stones affect your GFR? Am I considered a CKD patient now? There was talk about removing my entire left kidney. I am just shocked by all of this. I see a specialist June 5th but it’s driving me crazy not knowing. Anyone have any experience in this?

5 Replies

Hello Fvollan, I haven’t got any personal experience with kidney stones but I can speak from experience of kidney removal, having had my right kidney removed decades ago.

Please don’t Google, unless you look at very reliable sites such as the Mayo Clinic or, in the UK, the NHS website. We would all frighten ourselves to death if we googled and believed a lot of the stuff circulating on the Web.

Yes, having an eGFR of 55 does put you in stage 3a of CKD. But in itself that doesn't mean a lot. It is not a disease as such. CKD is just the name given to a condition where the kidneys don’t filter out toxins as quickly as when working normally. I told my kidney consultant that I thought it was a strange title and he agreed, adding that it was a name the Americans had conjured up and we had to live with it! What is important is to ensure that your kidney function remains stable at this level and you can help this along by avoiding salt and too much protein in your diet. I also avoid alcohol. Drinking plenty of water is a must as is keeping up some exercise and keeping weight within normal range.

Once you have seen the specialist and you have a plan in place for treating the calcium issue, you could well find that successful treatment will lead to an improvement in your eGFR.

What has been said that is leading you to believe you may be facing a nephrectomy ( kidney removal)? I would not worry about this until you have seen the specialist on 5th June. Meanwhile, think of all the questions you wish to ask and take a list to your appointment as it’s easy to forget once there. Good luck for 5th June and do come back and let us know how you get on.

in reply to Celtic

Thank you so much for your response. I’ve googled myself crazy unfortunately. I did see look at my hospitalization paper work and noticed my GFR went from a 46, to a 55, and I don’t know what it was on the last day it looks like the dr did not give me the lab results. I was referred to a urologist and he’s the one that mentioned the removal of my left kidney as I have Nephrocalcinosis as well. He said the damage may be too great to even try and remove the stone. I’m hoping for a happy ending with all of this! Thank you for the kind words I will definitely come back with a response after the appointment.

Hi! My gfr was down. An ultrasound was done, kidney wasn’t draining. Then I had awful, the worst pain. The stone started moving down low to the ureter.Through a CAT scan, it was determined I had a 6 mm stone which is fairly sizeable. I was scheduled to have it removed but I passed it and didn’t know. My surgeon found that out, but put in a stent to help the kidney flow. It didn’t stay in long because they can’t. Through renal scans it showed my left kidney is extremely small. Though we can’t be overly sure, the doctor felt that the stone had been there a long while and wreaked havoc on kidney. In looking back, I had a few signs. I had feelings if slight contractions in lower pelvic area and at least once my urine was brown. For now, I drink a lot of water, avoid sodium, potassium, phosphorus, alcohol, dairy, high proteins. Medicines, supplements, etc. can be harmful as well, smoking and high blood pressure. I do a lot of cardio exercise and my blood pressure is staying at an ideal level. That is what the doctor wants. Hope this info helps. Having the ultrasound, then CAT and renal scan provided the best information.

in reply to Sally10255

Did your GFR go back up? I know I am unable to pass a staghorn stone bc it basically has attached itsself to the branch’s of my kidneys and they have no idea how long it’s been there.

in reply to Fvollan

No my gfr did not go up...maybe 1 number, creatinine a tiny better, but that can fluctuate just on testing days. Mine is in the 40’s just not overly sure how to think about it since it is pretty much based on one kidney. Mine was a weird occurance. No pain until I had appointment with kidney doctor.

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