Nephrologist: Does anyone know at what stage... - Kidney Disease

Kidney Disease
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Nephrologist

Golf-dean
Golf-dean

Does anyone know at what stage a Nephrologist gets involved?

23 Replies
oldestnewest

When do you want to see one? I started when I was diagnosed by my then PCP.

Golf-dean
Golf-dean
in reply to Mr_Kidney

I’m meeting with my PCP Tuesday to review some additional lab work and discuss a care plan. I suspect she will refer me to a Nephrologist at that time. I was just curious if there was any consistent stage

Mr_Kidney
Mr_Kidney
in reply to Golf-dean

It's not up to your PCP. Ask and if the PCP says no, find another doctor. It's your health.

Mr_Kidney
Mr_Kidney
in reply to Golf-dean

The Executive Order that was signed in D.C. previously in part calls for notification to patients in the earliest stages of CKD hoping that they will be able to make the needed changes to slow the progression and thereby hold off the need for expensive dialysis treatments and transplantation. It is still incumbent on the patient to be proactive and insist on positive action with regard to their own healthcare.

Oldearkie
Oldearkie
in reply to Golf-dean

The closer you are to needing dialysis, the more eager they are to see you. That is when they start making real money. I you have the money, go to China. They have been treating bad kidneys for several thousand years and seem to have a handle on it.

Hi Oldearkie, I was troubled by your post and looked at your profile, noticing that you are a veteran. If you get your medical care at a VA (to which you are entitled) no one makes 'money.' Employees of a VA receive a salary that is not based on numbers of patients. Most who work for a VA do so due to having a heart for military members.

Hello Babbette,

Try to not be too troubled. Obviously you are on the "outside" looking in. I do get what care is available, which does not cover everything. I am on Social security but still have to make a "copay" because I was not injured while in the military. No dental at all. Sometimes the skill level of the "attending" leaves something to be desired: A few years ago, I developed a heart condition which required a replacement valve. The local cardiologist seemed just a bit too eager to accommodate me with open heart surgery so I decided to go for another opinion, outside of the VA. Thank god I did. Three cardiologists said that I would not survive the operation because of my advanced age and underlying conditions. I wound up at the Tulsa Heart Institute for a TAVR procedure, which the VA system paid for. I am 4th stage ADPKD , not on dialysis and do see a local VA nephrologist who told me that there are no treatments for my CKD. Having been to China for treatments, and knowing how to read, I knew better and called him on his statement: I told him that I had been to China and the they have been treating kidney ailments for several thousand years and where had he been? It took two years before he would speak to me again and he still does not treat my kidneys. He does prescribe medication for gout, which I do not have. A renal dietician would be nice to see but all we have are clinical dieticians who know only how to hand out printed pamphlets. They are pleasant enough to talk to but useless for any real help. The VA practitioners, granted, are on very good salaries but that does not prevent them from having stock or other ownership in dialysis clinics, or any other investments. So far, I have found altruism to be a fiction at all levels I have been in contact with. Ask your "specialist" and see if you get a straight answer. If a person just scrapes by in medical school, he can get a gravy job anywhere in the country at a VA facility. The nurses, male and female are of a higher caliber than the doctors are and are more professional, usually. Please do not consider this to be a diatribe, but just a statement of the real world. I am open for discussions, if you like.

Robert

I am truly sorry for your difficulties. In my state medical providers are not allowed to refer to treatment/clinic in which they have a financial interest. My husband's cousin lost his medical license doing so.

I do/did not insinuate that references are made without being asked for. I don't even know about my state. There are always, it seems, ways around ethics.

Bassetmommer
BassetmommerNKF Ambassador

HI golf,

There is so much to consider. A general answer would be that a nephrologist is usually seen at stage 4. But now, more doctors are seeing the benefit of stage 3 intervention. But it matters what the cause is.

I agree with Mr Kidney. If your doctor can not work with you in a manner that makes you feel safe and comfortable, then get a new one. Some PCP don't want a Nephrologist involved, I know mine doesn't. But, she doesn't have a choice if she wants to be my PCP. It is your choice not theirs.

orangecity41
orangecity41NKF Ambassador
in reply to HealthBuddyMelissa

Have similar situation and looking for new PCP. One who looks at more than just your eGFR.

Bet117
Bet117NKF Ambassador

Hi Golfdean!

Welcome ! Glad that you reached out.

I totally agree with

Mr. _ Kidney and HealthBuddyMelissa.

In essence, your PCP should be " the quarterback" of your team. He/ she should listen to your concerns and communicate openly with both you and any other specialists that you may see.

If your PCP's practice has a patient portal, then you have access to your lab results.

Print them out and take a good look at them.

( I also note my last lab results on the page next to the current)

Your results should be next to the ranges which are considered normal. If something flags high or low, check it off and bring it to the attention of your doctor at your appointment / call and discuss it.

Having a copy of your results in front of you allows both you and your doctor to look at the same page at the same time ; leave nothing unturned. I do this and it expedites the appointment.

Bring a family member if possible with a notebook to scribe for you so that you would be better able to focus on the answers to the questions that you ask and responses from your doctor. ( Another set of ears and reference for your next appointment.

The request to check in with a nephrologist is your choice as you are part of the health care team. You deserve the right to have your concerns heard as well as have your results explained. to you to see any physician that you wish.

If your PCP or any specialist is not communicating basically with you, as the patient, you have the right to another opinion.

Remember that this is your health and you have the right to advocate for yourself.

Stay strong and safe.

Please reach out again!

Bet

Golf-dean
Golf-dean
in reply to Bet117

Thanks.

Bet117
Bet117NKF Ambassador

See where your renal blood and urine levels are.

Bet117
Bet117NKF Ambassador

Oh Gosh, none ever needed!

I was referred to a nephrologist when my renal function suddenly dropped from the normal range to an eGFR of 49. I’ve been under the care of a nephrologist consistently ever since.

Jayhawker

As soon as your kidney shows a sign of slowing down. It was a whole nine years before mine slowed down completely. He told me when I would start on dialysis too. After they slowed down. Hope this helps.

I began right after I was diagnosed by my PCP 2 and 1/2 years ago at stage 3. I was 65 years old.I have remained mostly in stage3a. Nephrologist was the only one able to get my blood pressure under good control after about 2 months. Uncontrolled hypertension seems to be the reason for my development of CKD.

My PCP never told me I had stage 3 kidney disease for seven years. The renal disease caused me to have secondary hyperparathyroid disease. I was putting out way too much parathyroid hormone. I found my own nephrologist who ordered a sonogram of my kidneys and put me on a special Vit. D to lower the hormone. She also arranged for me to see a dietitian. I was eating all the wrong foods, thinking they were healthy choices. I wish my PCP had told me sooner. Now I look at all my blood workups ordered by my new PCP and my nephro. I am not as tired and achy now. My parathyroid number has come down over the last three years. My eGFR is somewhat lower. I say everyone should keep track of their blood work and see a nephro. at stage 2 to begin a relationship with your kidney doctor. I am 74, weigh 110 pounds and have always been very active, running, kayaking, hiking, gardening, etc. Being told I had kidney disease for seven years was a total shock.

I was referred at Stage 3. Of all specialties, a Kidney Specialist seems easiest to deep dive your education on your Kidney function. All blood work # driven. Scheduled 24-hour urine analysis also. Importantly, learn your blood work $'s. I keep track of all my reports, whether Nephrologist or Primary. I learned as much about my Stage 3 CKD on YouTube: dadadvice has a great channel.

Good luck!

Follow the money. In this country the nephrologists I've found are interested in you when you need to go on dialysis. In some countries, I understand their job is to keep you OFF dialysis. Cynical? You betcha. I'm 84, gfr 20, ADPKD. Not on dialysis yet and feel pretty good most of the time!

At a routine physical with my primary care provider I had a GFR in the 50s. The lab was repeated (similar value) and I was immediately referred to neurology. Prior to that, everything was within normal limits.

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