Finally got the results of my kidney biopsy. Doctor called me this morning and told me there is no sign of disease on my biopsy. What the heck does that mean?
Let me refresh you guys. Diagnosed CKD stage 3. 44/F. Ultrasound in Jan showed no signs of disease. July 2020 was my very first GFR score.
July 2020 -GFR 60
Sept. 2020 GFR 57
Jan. 2021 GFR 56
April 2021 GFR 58
Back in January nephrologist told me that he would like to do a biopsy to find the cause of my CKD. He said sometimes there is no cause, when I saw him again in May he said based on my GFR declining slowly he predicted it would be 20 years before I had to worry about dialysis/transplant. Now based on my biopsy he said that there is no disease and my kidneys would probably get better. None of this makes any sense. He basically gave me 3 different conclusions. So what does this all mean. Does anyone with CKD have an inconclusive biopsy and what were your experiences. Did your GFR get worse/better? Did you eventually have to go on dialysis? Did your CKD just disappear and everything went back to normal. I don’t get it. Any help please.
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JaimieL
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The disease gets its name because this damage is not visible under a regular microscope. It can only be seen under a very powerful microscope called an electron microscope.
Each case is different. Mistrial recommended a plant based diet, I love it. If you are considering it, please check with your doctor and a dietician to see if it is best for you and if so, what foods.
Each kidney case is unique to the individual. Every Nephrologist is only as good as his capacity to learn, education, experience, cooperation with other Nephrologists, ability an willingness to research and learn new developments, etc.
I was diagnosed with glomerulus nephritis 30 years ago. I found the right Nephrologist for me (I am inquisitive, ask many questions and won't stop until I am satisfied) 14 years ago. My eGFR was 22 and creatinine was low 2.0. With the proper kidney management (mix and match of meds as I have other conditions, diet, lifestyle, etc), he was able to extend my kidney's functionality until my living donor transplant a month ago. He was also able to reduce my stress level by being open, providing me with options and preparing me with the eventualities. He researched a lot and has a vast network of fellow Nephrologists.
Points are:
- Find the right Nephrologist for you that will give you the right answers. After all, you are the client.
- Our advices and opinions could be unique to our case. We base these on our experiences and/or what we researched. We are not kidney disease experts. Digest what we give you and use them to create questions you will ask your Nephrologist (the right one). He is the expert.
Thanks. I’m seeing my primary doctor today. Hopefully he can give me more information. I made a list of questions to ask. I also think I’m going to get a referral to another nephrologist for a second opinion.
Honestly, I think that you are headed in the right direction to see your PCP; he is still the quarterback of your team.
I would be candid with him about your test results and ask for a referral to another nephrologist as the present person appears not to be listening and communicating with you properly.
Why did he send you for a biopsy? If it showed nothing, what is your medical action plan going forward.
Call the records office of the hospital where your biopsy was done and get 2 CD copies of your biopsy as your PCP and 2nd opinion nephrologist will be interested in seeing them. I did that for both my PCP and my present nephrologist.
Go one day at a time - you will get this straightened out.
Good idea Bet. I’ll call the hospital and get the CDs. That’s just it ...there doesn’t seem to be a care plan. He just thinks my GFR will fix itself. This whole thing is so frustrating. Grr 😠 lol
I feel your frustration as it appears that this doctor is dismissive and not providing you with the guidance and care that you are not only paying for, but deserve.
Having your labs and a copy of your biopsy saves so much time and energy when you meet with another nephrologist as the leg work has been done and you can go forward.
I know as I changed nephrologists after my biopsy but had the CD ready for the new person. He took a look, read prior labs, did his own and we set a plan together..
If a doctor is not listening to you, explaining in basic terms and communicating with you ..and going forward, than perhaps they are not the right person for you.
It will all work out. I promise. Please reach out and let me know where you are in this journey. I will always reach back.
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