What were your early symptoms of kidney disease?

Most of my ailments were found by accident too...except for the seizures and ms...one musn't put doctors above themselves, In 99% of all the doctors. Hospitals I've been to in the last 63 years, I see most of these clowns called Drs are just that. I've had medical training in college yrs ago so I know a bit more about conditions than the average Joe. I've diagnosed myself quite a few times and then got a "professional" diagnosis which confirmed it. The majority of these bozos only care about how far their wallets are getting.

That's the predicament I'm in . I have to look up stuff because I have suffered for years with mystery symptoms.Last year I was diagnosed with a blood disorder.My dream is that a great dr.will finally help figure this all out and we can heal this body of mine.I don't look sick but I am sick and can't hold a job.We went down to two hours and I still couldn't work right! I learned not to put my self in anyone's hands .

Well said marj.  Sure there are doctors that are "bozo's".  As there are in any profession you can name.  And it is likely that in some hospitals and institutions because they pay too little, they do not get the cream of the crop.  But a blood test is a blood test.  A CT Scan or an Ultrasound is the same everywhere.  It does not take an expert to diagnose CKD.  To self diagnose with just visiting a doctor is just silly.  Now once diagnosed you certainly want someone with ability and that you trust to guide you medically.  Find one.  I have stopped going to a couple of doctors because I felt they did not hear me, or listen to my needs.  Then I found my current team of a urologist, a kidney doctor, an oncologist, a cardiologist, a primary care, all associated with a well respected hospital in our area, and I feel confident in their opinions.  The advantage too is by having more than one doctor you can compare their recommendations and diagnosis.  Sometimes they do not all agree (mostly they do) and when there is a difference I bring it to the attention of all concerned and ask them to sort it out.  But to believe that all doctors are useless and don't care for their patients, is just a small minority.

Rick,

I've had similar experiences with doctors. I suspect most of us have had some less than optimal care. I've "voted with my feet" when I encounter that sort of situation.

I now have a team who are associated with the most reputable medical facility in my region. It has made a tremendous difference! I feel MUCH better. I'm functioning MUCH better. And I trust them.

Like you I look for consistency across my team. When there is a difference of opinion, I bring it to everyone's attention so they can work together to get it sorted out. I find this multidisciplinary approach to my medical care is much more effective. But it can take some time and persistence to get this all set up and working well.

Nevertheless, it is absolutely worth all the time and effort to get a medical team in place that is able to provide effective care. And yes, I'm a real data geek. I keep a close eye on my data--you're right, no matter how marginal the doctor may be, the data is the data. I've recently changed nephrologist and am not only having better treatment results; I'm also learning that my prior nephrologist was really accurately diagnosing a part of what has been causing havoc for my kidneys. Clearly a change was needed! I'm thankful to have found s nephrologist who knows what he is doing🐶

Marj

My reasoning is if you see a group of symptoms or long term problems the antenna should go up . Even when I have a diagnosis I am the one who research to find out if I should exercise and eat certain foods or take certain medicine and natural remedies ,yet we're told we not doctors .A person is going to be alarmed if you tell them their organs are enlarged etc! If I can't work what do I do?For weeks you ok then a flare up like your body lost it's mind.The forgetting is frustrating and embarrassing!

I live in the US and go to the University of Kansas Medical Center for my renal care now. I started seeing a nephrologist with KU Med last August. Over the past 7 months my creatinine has improved from 5.6 (rHTF of 8) to 2.75 (eGFR of 18).

I've been very surprised, and pleased, by this improvement. In my case it is because the nephrologist I saw initially had my blood pressure very low. The treatment plan that first nephrologist had in place also lead to frequent sudden plummets in my blood pressure. (It would plummet to 74/42 4 to 5 times a day. The rest of the time it ranges from 80/58 to as goo as 95/74. That nephrologist would frequently say, having performed a biopsy, that I should have much more renal function than I had. I would ask him if my blood pressure was too low; was that causing the problem. He would immediately say that it wasn't low enough. I would leave appointments thinking that if it went much lower I'd very likely not be able to function at all.)

This went on for approximately 4 years. My "treatment plan" was to drink ice cold water when my blood pressure plummeted. But that was it. Meanwhile my renal function continued to deteriorate moving from Stage IIIA to stage V, renal failure. I got fed up with the uncertainty and requested an outside consult.

So last August I saw the university nephrologist, my current, nephrologist, for the first time. What a difference that appointment has made!! 

As I've been to subsequent appointments I've seen my renal panel show gradual improvement every month. But perhaps what I appreciate most is that what I hear in my appointments with my current nephrologist actually makes sense. And, my renal panel data correlates with what I'm hearing. 

So o say, vote with your feet. The doctors work for you, essentially. You can try another doctor and another until you find one who knows what he or she is doing with your case. It really is worth the time and effort! And, there are effective, knowledgeable doctors practicing medicine. We patients just have to keep searching until we find them🐶

Marj

I'm sorry, my typing isn't great on my phone. My creatinine was 4.6 with an eGFR of 8. It is now 2.75 with an rGFR of 18.

Marj

Rick,

Yes, my current nephrologist has clearly and definitively said that my blood pressure was too low; that I didn't have enough blood flowing through my kidneys, in essence. So he said my renal function would improve when my blood pressure elevated.

Of interest, I see an ophthalmologist regularly as well. He has said the same with regard to my vision (not knowing I was hearing exactly the same thing from my new nephrologist.) and, I definitely have improved visual acuity with my blood pressure in the range it is in now. Plus I have s noticeable increase in sensation in my feet.

I have no idea whether there will be more improvement or not at this point. I also have no idea how much, if any, additional damage the low and sudden plummeting blood pressure may have caused for my kidneys. (Both were happening much of the time from September of 2013 through August of 2018. So that is just about four years. It took 6 months from the point of referral to my first appointment with my current nephrologist, unfortunately.)

Anyway, as I've watched my creatinine improve anywhere from .2 to .5 with each lab test since last August I have wondered how much improvement I can reasonably expect to see. 

My university nephrologist has clearly stated that extremely low blood pressure is as bad for our kidneys as extremely high blood pressure. His first comment to me in my second appointment was that my blood pressure was better. He has pulled me off all blood pressure medications and diuretic medications. So I now follow a low sodium diet only, which I was doing before. My BP fluctuates some but is generally in the normal range.

So my take away from all of this at this point is that my BP management with my first nephrologist was not effective and was actually minimizing my renal function. I'm hoping that there will be more improvement over the next 6-9 months but realize there may not be any additional improvement.

I definitely haven't run into many on this forum who have had a problem with BP that is too low the way mine has been do I'm thinking this must be fairly uncommon. Nevertheless, it does appear to be a part of my renal function difficulties.

Marj