Out of the Blue

By Mine

1 min read

March 2022 - Blood test showed an EFR of 88
February 2023 - Blood test showed an EFR of 14
July 2023 - Blood test showed an EFR of 18

I am a 76 year old male who has always lived an active lifestyle including daily brisk walks of 10 km or more. About a year ago due to consistent tiredness, I cut my walking and other exercise in half, but still was fairly active daily.

Monitoring my blood labs

6 months or so ago, I wound up in the emergency room with chest pain where my low EFR was recognized. I had a kidney biopsy, but my nephrologist has not shared the results with me.

I have seen this kidney doctor only once in 6 months, but he is monitoring my blood labs monthly. I have had only one 4 minute visit with this doctor in 6 months. I asked him what I could do to help myself with this problem and the only advice he gave me was to "eat a healthy diet."

Getting involved

I am attempting to get involved in a group at a local hospital for stage 4 or worse CKD patients but need the doctors reference. I was told my the doctor that I did not need this program. My family doctor is very supportive, but seems reluctant to interfere in any way with the kidney doctor. Any and all advice from anyone with CKD would be appreciated.

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Diane Talbert Moderator & Contributor
Hello <inline-mention username="Mine" user-id="8592571"/> , This is very interesting. I just got diagnosed with CKD. My youngest son has been going through this for 3 years now. One of the things that he told me was that the kidney doctor trumps all other doctors. He sees this doctor often and takes all directions from him. I would ask the family doctor again to intervene on your behalf. My father also has CKD. He is almost 90. I worked very closely with his primary doctor and kidney doctor to make sure they are both on the same page. Let us know what you find out. Diane (Team Member)
Jennifer Jones Moderator & Contributor
Hello <inline-mention username="Mine" user-id="8592571"/> I'm sorry that you are having challenges with your nephrologist. I would encourage you that if you are not satisfied with the responses (or lack thereof) do not hesitate to call your nephrologist and ask more questions. Advocating for yourself is so important while navigating this disease. And yes, it is not common for a family doctor to have input or discuss your treatment with the nephologist. I do not know why your doctor feels like you do not need the program since you are Stage 4, have you discussed with him why you feel it would be beneficial for you? In the meantime here are an article that can offer some more information: About Stage 4: <a href='https://chronic-kidney-disease.net/moderate-stage' target='_blank'>https://chronic-kidney-disease.net/moderate-stage</a> . I am a two-time kidney transplant recipient, if you have any questions please do not hesitate to reach out. ~Jennifer (Team Member)
1. Mine Member
 Thank you for directing me to this information Jennifer. I am doing everything to learn as much as I can so it all helps. I have discussed my problems with getting my nephrologist to engage with me with my family doctor and she supports my intention to change nephrologists after my next visit if I continue to have problems. I feel I need the type of program that would help me to learn as much as possible. My family doctor says she has found a similar program for me, but it has been 2 weeks or more and they have not contacted me. I really am relying on websites like yours for any and all information I can find. Thank you
2. Diane Talbert Moderator & Contributor
 Hello <inline-mention username="Mine" user-id="8592571"/> , Just following up to see if you found the right information that you needed. Education is the key. We have to be our own best advocates. We haven't heard from you in a while. How are things going? Diane (Team Member)
Mine Member
Thank you for contacting me. I have changd Nephrologists which took months to accomplish, but I feel I have made a very positive change as my new one has already made a very good impression on me. I am fortunate to have a very supportive family doctor who supported me in making this change. Good luck with your journey.
1. Diane Talbert Moderator & Contributor
 Hello <inline-mention username="Mine" user-id="8592571"/> , This is all good news. Finding the right healthcare is worth the battle. You keep in touch so that we know how you are doing. Diane (Team Member)
2. Cindy Barton Moderator
 <inline-mention username="Mine" user-id="8592571"/> Hey there! How is your new nephrologist working out for you? After 7 years I had to change doctors too. I love my new nephrologist she is young and attentive and spends so much time with me answering all my questions. I hope by now you have been able to get instructions from a certified renal dietitian and their advise has helped you with a kidney diet. I am a firm believer that what we eat or don't eat does make a difference. Hope you reach back out and let us know how you are doing. Cindy (Team Member)