CKD, Stage 3 Symptoms and my Nephrologist.

[Judiblue]

Hi All,

It's been a while since I've posted, so here goes. My kidney disease, FSGS (Focal Segmental Glomerulosclerosis) has been very active since moving to VA. I came out of remission 6-7 months ago and have been struggling with symptoms for the last 4 months. Symptoms such as kidney pain, fatigue, nausea etc. I've mentioned these to my Nephrologist and he tells me that they are not symptoms of kidney disease. My eGFR came up to 48 from 34, but my protein spillage is up from 3+ grams to over 5 and a half grams. I've never spilled this much protein and I'm not sure where to go from here.

[Zazzel]

Hi Judiblue,

You might want to look for another Nephrologist if he/she is disregarding your pain and symptoms and not recommending anything for your protein spill. I fluctuate between low and mid range stage two and have had similar symptoms. When I mentioned continued kidney pain to my Nephrologist, she had me do an ultrasound. It showed I had a cyst on my kidney. Nothing to worry about, but explained the pain.

She also put me on Lisinopril for my protein spill which has helped to reduce it. There are options for protein spills which your Nephrologist should be working with you to reduce.

You might also check out the article Mr Kidney posted about kidney pain here kidneyfund.org/kidney-disea...

I hope you are able to relieve your symptoms soon and get answers.

[666sb]

Well I went to my doctor he said my kidneys were in the low range there working about 45% and tolded me not to worry

[Marie4 in reply to 666sb]

Did you go to a nephrologist ? If not I think you should , your number indicates you may be in stage 4 kidney disease. Or get a second opinion from another specialist soon!

[Judiblue in reply to Marie4]

I do have a Nephrologist now, but he is not communicating with me and is disregarding my concerns about symptoms I'm having. My eGFR at last check was 48% and my Urine/Creatinine ratio is 5,513 grams spilled in a urine sample check. I am seeing another Nephrologist and the first appointment is not until July 13th... so I'll just hang on 'til then. I'm documenting everything for the new Nephrologist.

[Marie4 in reply to Judiblue]

Well good luck, and keep me posted, I will be praying for you. My stage 3 is doing okay, but need to drink more water. Hope you find all your answers🤗

[Judiblue in reply to Marie4]

Thank you, Marie4, for your prayers! Prayers are always welcome. Because of swelling, I've been put on fluid restriction. No more than 60 oz. a day. I'm glad that your stage 3 is doing ok. It's a good thing!

[Marie4 in reply to Judiblue]

I do know that with the new advances in technologies that patients can live along life . We are all blessed to have the knowledge that the specialist have now. Have a good day.

[Bet117 NKF Ambassador in reply to Judiblue]

You are on the right road. If a doctor is not listening to you find one who will.

I send you my thoughts and all of my prayers. Please let us all know how you are doing.🙏

[666sb in reply to Marie4]

I did see the Nephrology!!! I a ultrasound no kidney stones or cancer I"m sure they were checking for mass.......didnt really tell me anything.........

[Jenkea in reply to Marie4]

Mine was 45% when diagnosed 3 yrs ago it’s currently 53, it has gone up every Dr visit.

[Frankie24]

Sorry to hear that your Doc. is not helping, my nephrologist who is also a researcher does the same thing, when I tell him at stage 5, eGFR 13, that I have fatigue or shortness of breath he tells me it must be something else. I have been fully checked out as I am on transplant list so I know that all other systems are working pretty well ! I have begun to educate myself and take charge ! You must advocate for yourself, so learn as much as you can. I am learning to no longer back down and to try to be in charge of my health. I have heard many people say they suffer from fatigue, shortness of breathe, kidney pain, nausea, dizziness and I am sure the list goes on...I have had all these symptoms at one time or another. It sounds like maybe you are not happy with your nephrologist ? If so perhaps a consult with another, just a suggestion. I am consulting with another nephrologist in the same group because I feel like I waste my time with my current nephrologist despite his excellent background. Best of luck and feel better.

[CNeb]

What part of VA? I have a great nephrologist in the northern Virginia area if you’re interested.

[DiamondLizzie]

How is your diet ? Are you diabetic?

[gingersmom9102]

If it is possible for you to switch to a different nephrologist, that would be my suggestion.

It sounds like your current practitioner is brushing aside your concerns and does not truly have your best interests in mind.