I posted on here 10 days ago regarding my eGFR dropping from 52 to 36 since October. I had a lot of helpful information for which I am grateful but I had another
U&E test last week (18 days after the previous test) and the results came back as Urea 23.9, Creatinine 187 and eGFR 24 with an AKI 1 warning. This is quite a big drop and puts me at Stage 4 now. My GP had already referred me to a Nephrologist but once she saw these results she requested an urgent appointment. I was seen today and I was pleased to get such a quick appointment but I was disappointed with the outcome. The Nephrologist blamed it on my heart failure rather than the medication I am on and was reluctant to do any further tests, not even a scan to see what may be going on, saying that heart failure has an impact on both kidneys and liver. He said he will write to my GP to recommend blood tests at least every 3 months and will see me in 12 months. He seemed to think because there is no protein in my urine it does not raise enough concern for more tests. I am aware that eGFR can vary depending on hydration etc but my concern is that if it can drop by 12 so quickly how can the Nephrologist be so sure it won't drop even more before my next blood test and wouldn't a drop of another 12 put me in danger of going into kidney failure? Any thoughts/opinions on this would be very much appreciated. Thanks in advance.
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Thank you for your reply Marvin8. I didn't expect the Nephrologist to estimate a prognosis but with my condition, it has gone from chronic kidney disease to acute kidney injury in a very short space of time and a huge drop of GFR in a matter of weeks so I would have expected a renal expert not to be so flippant and pass the buck back to my GP who is not a specialist. He should have at least gone through my medication to see if any could be adjusted.
I can understand your frustration and concerns, but you do need to try trust your GP and specialist that if your situation worsened, they would act promptly and appropriately. Your cardiovascular system (heart, lungs, blood vessels) work hand-in-glove with your renal (kidney) system to maintain homeostasis within your body. Your kidneys help filter out waste products, maintain blood pressure, fluid and electrolyte balance within your body. Your heart failure will be affecting your kidneys and vice versa. Learning how to maintain a healthy lifestyle, diet, exercise etc will help both your heart and your kidneys. Keep the channels of communication open between yourself and your GP and discuss your concerns. Here are some links to more information and do follow through to their other links for more information:
Obviously you are right to be concerned. When I first went to my kidney doctor I too had expectations much like yours. I was expecting to learn more about what is wrong. To get an opinion on my future. To probably get medications or treatments that would improve or stabilize my condition. But I too walked away from the appointment disappointed. Now months later I realize more my expectations were not realistic. Your doctors (and mine) ran all the appropriate tests. And bottom line, it is what it is. There are no magic wands, no curing medications, no special knowledge that one doctor has above the other. It seems your doctors are saying your "numbers" are highly influenced by your heart condition. I assume you are also seeing a cardiologist. If not, see one. I found that my cardiologist has had more knowledge and influence upon my condition than any of my other doctors. You doctors feel further testing is not necessary. Have faith in your doctors. BUT, it certainly would not hurt, to get a second opinion. Even if you see another doctor or specialist, and they provide you with the same direction, you will at least know that what is being advised, is correct.
Hi RickHow, I had the exact same hopes as you and the disappointment is huge at the moment, until my brain has time to adjust and realise I perhaps did have unrealistic expectations. I did however not expect to be dismissed in what appeared to be such a flippant manner. It was as if he didn't care and wanted to pass the buck back to my GP and cardiologist when surely having heart issues should be all the more reason to be more helpful as both affect each other? My heart and blood pressure are actually stabilised now and such a big drop of GFR in such a short space of time may not be related to heart failure. He asked me a couple of times if my ankles are swollen to which I replied 'no' but I have thought about it since and my face, eyes and stomach are quite bad and there are other symptoms too.
I haven't seen my cardiologist for quite a while so perhaps I need to try and get an appointment with him for as soon as possible. I have also decided to get my own blood tests in 6 weeks instead of waiting for 3 months for my GP to authorise them, then at least I will have peace of mind.
If you don't mind me asking, how low did your GFR drop to and did you have any symptoms? Also how are you at the moment?
Feel free to ask whatever is on your mind. We are all here to help each other. My tests were all normal. As was my life. But then a tumor was found on one kidney. Cancer. The kidney was removed. The day of the operation I had a normal egfr. After the operation, the very next morning, my egfr was 38. It has stayed in the range of 38 to 41, going up, down, from test to test. If I remember to stay hydrated it goes to the 40's, if not it dips to 38 or so. So my "CKD" is caused by the loss of the kidney. However this is where the debate begins. Is my existing kidney really with "disease" or are my numbers "normal" for just one kidney. Here is where I have disappointment with my kidney doctor like you do yours.
My experience with the kidney doctor is exactly like yours. I was almost shocked how little she offered, advised, even seemed concernerd. But as I read on this website there really seems to be so little the kidney doctor can do other than normal testing, measurement, limited dietary advice. There really are no medications, procedures, to stabilize. It is more lifestyle.
I strongly suggest your cardiologist. If you have doctors advising your numbers are such because of heart related issues, then you should see a heart specialist. Maybe he will agree. Maybe not. But he certainly will be able to comment. And to provide control of your heart issues. And he would likely also perform blood tests. So maybe you can see him soon, get the testing through him, and then have frank and open discussion with a new set of eyes and opinion.
I am sorry to hear you have had to go through the trauma of cancer and I am shocked your kidney doctor could not say for sure if the remaining kidney is diseased or if those numbers are to be expected with having only one kidney. I would have thought that was a good question and for an expert such as your doctor, this should have been a straightforward question with a straightforward answer. I think sometimes we learn more about our own bodies than most doctors, even the consultants, who have had years of training.
My GP practice has at least 10 different doctors so none of them get to know a patient really well. Last year a new doctor made a huge mistake by not reading my records properly and putting me on Spironolactone when I was already on Eplerenone. They are both potassium-sparing drugs so within a very short time my GFR dropped to 38 from 52 and my potassium shot up to a dangerous level. Other mistakes have been made as well by other GPs which goes to show they are not infallible and to be honest, I get more help and advise from HealthUnlocked and some Facebook groups than I do from my doctors.
I am most certainly going to follow your advise and try to contact my cardiologist's secretary tomorrow. Failing that, there is a heart failure clinic with very knowledgeable nurses so I will try them.
Thank you so much for reading my post and taking the time to give me such helpful answers.
I am in the UK Betsysue2002 so unfortunately I just get referred to a kidney doctor within my health authority and I have to see him or her, I don't get a choice. I think I may be able to ask for a second opinion and will definitely ask to see my cardiologist.
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Just going into CKD stage 5 and need your advice please
Saying goodbye. And leaving some info that might make you people that have a "near" normal gfr feel better!
Protein in Urine & "Slightly echogenic kidneys"
Kidney Biospsy
NEWBIE with deep anxiety over CKD. Being a hypochondriac also doesn't help! Glad i found this site. Being in a group helps tremendously!! 
