I think I'm on track for CKD, what do you guys think?

[Stacybryan76]

Hi, I'm new here, I am so happy to have found this board! In advance I want to thank you for reading all this, and I realize not to expect medical advice. I just need some direction. I have been feeling VERY ill for almost two years, and the docs think I'm nuts (probably). My skin has darkened, major fatigue, salivary gland stones (severe pain now), red eyes and vision gradually worsening, fever, swelling in belly and veins, rash on neck and chest, swelling around neck and ribs (lumps on ribs) which is painful. Urgent care doc said that was calcium deposits, but family doc said they weren't. One month ago my eGFR was 59 and creatinine a little high, which is new for me. These numbers haven't deviated to outside reference range ever. I told the doc I have kidney pain, but he said we'd recheck if needed. I went to the ENT for neck swelling yesterday and the labs came back today:

I'm hoping someone could give me an idea of what to expect this coming week when I go back to the doctor, and it seems to me my latest labs point to CKD:

eGFR = 55 (L), Creatinine = 1.09 (H), Glucose Level = 103 (H) *Incidentally my BUN was marked (L) = 7 and MCHC = 30.5 (L)

**My son has a genetic disorder (BBS) that is autosomal recessive and often leads to renal disease and decreased kidney function. He was born with solitary kidney and our genetics puts us at risk for CKD.

[Hidden]

Hi, I hear you mention seeing an urgent care doctor and a family doctor, but what I didn't read was who your appointment was with this week. If it's not a nephrologist then why are you going back to the same person who couldn't give you a sound answer?

We can't and don't diagnose here.

You mentioned no underlying issues like diabetes and/or high blood pressure so with the numbers you posted it sounds like you need to see a nephrologist. Whether or not you have CKD should be determined by a kidney specialist. If you are seeing the same doctors over this two-year span, I have to ask why? If the doctor(s) are not helping you over this period of time you need to find different ones that will be of help.

At your first opportunity, please find a good nephrologist as soon as you can and bring hard copies of all of your previous lab results. Also, bring a complete list of any and all medications and their dosages with you. Include all over the counter meds as well as supplements.

Best of luck.

[Stacybryan76 in reply to Hidden]

Hi Mr Kidney, thanks for the reply. The doctor I am going back to is an ENT I was referred to about a year ago. We have gone back and forth about a biopsy of the swollen lymph nodes in my neck. He first wanted to do some labs, and I received the results over the weekend. I will be hearing from him on Monday and I’m sure he will send me to a nephrologist. I will call in to the nephrologist Monday and make an appointment (where my son goes). I’m Thinking my ENT will want to biopsy anyways if he sees signs of a bigger problem that could be affecting my kidneys.

So the previous doctors the past two years were because I was referred from one to one after the other (Rheumatologist, Hematologist, Gastrointestinal doc, ENT, naturopath for diet and back to family doc between each one for follow ups. The only signs we saw in regard to issues with my kidneys were random. Like high blood sugar a few times, but no protein in urine and EGFR was always normal until one month ago, but now, as I mentioned, it has fallen lower. I felt all the symptoms mentioned above though, and I think my symptoms were too random for su of the docs to figure out. I think I’m very untuned with my body, so I was feeling these changes at the very start of the two years. I have been in severe pain off and on for three days, primarily in my neck and face from salivary stones, which could be from kidney problem? I asked my ENT for painkillers, but the doctors where I live don’t like to prescribe them (I have no history of problems with painkillers) and so the nurse said take Tylenol alternating with ibuprofen (which scares me because I know it’s hard on the kidney). I’m using a heating pack which fills the pain a little, but it’s not enough. I’ll let you know what I find out.

[orangecity41 NKF Ambassador]

We are not able to diagnose here. Hope you are able to find an appropriate Doctor who will diagnose correctly your conditions and you get on the right track for treatment. I had a Doctor who did not diagnose me correctly and a new Doctor did and got me on the correct treatment plan. Keep us posted on your results. If you do have CKD this is a good site for learning and help.

[Stacybryan76 in reply to orangecity41]

Thanks orange, may I ask how bad it got For you before correct diagnosis?

[orangecity41 NKF Ambassador in reply to Stacybryan76]

I was 74 when I was diagnosed and have other medical issues, so hard to say which symptoms were directly related to CKD. I was quite surprised by the diagnosis. I was fatigued a lot? Looking back on previous test results from another Doctor did indicate a pattern for kidneys declining, especially eGFR.

[Bassetmommer NKF Ambassador]

Hi Stacy,

You really need to find a health provider with your best interests. I think you know that. Sometimes, it takes creativity for doctors to finally diagnose. And sometimes, it is not just one problem. It took me two years to finally get the diagnosis of Psoriatic Arthritis. Unfortunately, at that time, 14 years ago they prescribed a cocktail of drugs for me that crashed my kidneys. But.... no one seemed to think it was important. Several years later, I was stage 4. Back then, no on knew the connection to PsA and CKD. But now they do. So push for the work that needs to be done to find the route cause of you issues and get the treatment you deserve. And do not ever let a doctor make you feel like you are nuts. Its your body. No one knows it better than you.

[Stacybryan76]

Thank you Bassetmommer, and I’m sorry for what happened to you. I hope you are managing okay. I’m going to make an appointment with my son’s nephrologist, so between him and my ENT I hope we find more answers. I hope things go okay with you.

[Goodness11]

Don t worry, your creatinin is ok

Gfr 59 iş not bad