Kidney Doctor

[itzmich]

Can't seem to get an appointment any time soon and I'm worried. What is the kidney doctor "really" going to do? My GP is testing my blood weekly (which I think I might switch to monthly) Had an ultrasound...normal. My BP and sugar is good. Eating much better, exercising. I feel pretty good....a little tired (and worried) but good. My GFR is 41 (not great) but better than last weeks 35. Creatinine and Bunn a little above normal. I'm doing ALL I can. Is the nephrologist going to do anything more??? Really like some imput.....

[Bet117]

You are doing the best that you can. Watch the sodium, dairy and red meat consumption.

Speak to your GP for a referral to a nephrologist, if for no reason, just to establish with one and get their opinion. Very often, the GP referral can expedite setting up an appointment for you.

Please let us know how you make out!

Keep your chin up!

[Mgt8]

Hi

GPs have knowledge of kidney problems but renal consultants are the experts and may well offer you extra advice based on your individual case.

Take the best appointment you can And wait, is my advice.

Best wishes,

Mgt

[lowraind]

I agree that a referral from your primary physician might expedite matters. A nephrologist will also look for any possible causes and may be able to give you more specific information. I would still back that up with my own research.

[itzmich]

Yes have a referral from my GP and willing to travel no luck yet!

[RickHow]

I agree with you so much. My CKD journey started when in routine exam and then followup ultrasound (by my GP) a tumor was found on one kidney. I then was sent to a urologist who removed the kidney. The removed kidney was cancerous. I was then sent to an oncologist and started to see a kidney doctor. Yet I still see my urologist and gp. My gp does routine blood testing. The urologist does the SAME blood testing and urine testing, then at 6 month intervals an ultrasound on the remaining kidney. But he now will stop this (it has been one year since kidney removal) . There is a huge cyst on the remaining kidney but nothing can be done about it. To drain it is not feasible because they simply refill. The kidney doctor has been totally useless. Oh she is kind and caring. But the only thing she does is repeat the same urine testing of the oncologist. And about the future and the cyst all she offers is nothing to be done except diet, exercise, blah, blah, blah, all the things we all know and that my gp already tells me. The oncologist only adds (which is important) chest xrays and liver testing to look for any spread of the original cancer. The interesting part of the kidney doctor is comparison of results. One month I had a blood test at my urologists hospital. The very next day I had one at a different hospital by the kidney doctor. The egfr levels were 6 points different. Each also performed urine testing (not just a dip stick). One day my leukocytes and ketones both were reported as upper levels above normal. The next day both reported normal. It teaches me not to panic on one set of results. Go to the kidney doctor. It does no harm. But certainly don't expect much if you already have a knowledgeable gp or other doctor.

[itzmich in reply to RickHow]

Geez what an ordeal.....so dishearting. Sending positive energy your way. I

[Rkgaither1954]

I really do not know why they are called “kidney specialists”. They do nothing different than your GP does. I’ve been to 3 different ones only to be disappointed by what they “don’t” help you with. They all say I don’t have a problem! They are full of BS! I have a big problem! I’m at stage 3b now, and when I was first diagnosed with CKD my GFR was 59. If these “kidney specialists” would have done what I expected them to do, which is to help me and guide me on what to do to keep me from getting worse, my GFR would not be down to 44! They are totally useless!

We have to do our own research and be in charge of our own kidney health. What helps me the most is Davita.com. They give you the do’s and don’t’s of what to eat, and provide good recipes and advice.

Best of luck to you!

[Pennyruss]

To be honest I don't think there is much the nephrologist can actually do (unless cysts etc are involved). There isn't a cure for CKD and it is a gradual downward spiral, slower if you watch your diet. There can be fluctuations in GFR depending on what you eat and your general lifestyle. The nephrologist keeps an eye on things and will eventually set you on the path to dialysis if it is necessary. I have had CKD for many years. I was not referred to a nephrologist and told officially until Stage 3b, (about 10 years ago). I was told that the most important thing is to keep blood pressure down and take plenty of exercise. My nephrologist also said that very few people actually die of kidney disease; most die of something else! I am now in stage 4 and have been careful to eat a good diet, avoiding too much potassium and phosphorus and fats and eating very little meat. At my last checkup everything had improved, so I need to keep this up.