I have some kidney issues

[dbeck2010]

I have the same issue another person has I asked my doctor if I could see a kidney doctor and she didn't think it was necessary because my GFR went from 45 to 57. How can I find a doctor kidney doctor to go to because I think my doctor is incompetent for not caring about my health as much as I do

[Jayhawker]

You can try calling nephrologists’ offices yourself for an appointment; however, in my experience it will take quite a while before the nephrologist will see you in that circumstance and some won’t see patients without a referral at all.

So I’d suggest that you first schedule an appointment with a new PCP. Then make copies of all your renal panel data for the past several years. Take that data to your primary care physician, the new one, and talk about your data. Then let the PCP know that you would like a referral out to a nephrologist to learn what is causing this change in your renal panel data as well as what you can do to reverse, stabilize, or slow the deterioration in your renal function. I’d emphasize that you’d like early care rather than waiting until you’re in Stage IV or Stage V (renal failure) to see a nephrologist; waiting that long is really too late to get out in front of this situation.

Let us know how this is going.

Jayhawker

[Hidden in reply to Jayhawker]

You definitely need a new physician if you want to get ahead of this and have a legitimate chance of slowing the progression of CKD. I'd recommend you use the website below to find another nephrologist either where you live or nearby. Also, don't be afraid to be more assertive in your request. It's your life and health that's on the line. Any doctor who refuses to help you with this referral is not really one you want on your Care Team.

healthgrades.com/find-a-doctor

[orangecity41 NKF Ambassador]

Maybe a second opinion is in order. My Doctor does an average of all my eGFR tests and also looks at other bloodwork in making a determination.

[itzmich]

I went through the same thing with my Dr. It took 2 years and 2 different Drs to finally get to see a nephrologist. I kept insisting. Keep asking why not, or have them explain why not. I think there is insurance criteria before they can send you or even say that you have ckd. Keep pressing!

[Jayhawker in reply to itzmich]

I actually contacted my insurance company when my data began bouncing around but was still coming in, on average, with an eGFR of 55-60. They definitely covered the nephrologist’s appointment without problems. In fact, they wanted me under care from a nephrologist with the hope that I’d never need dialysis. That makes sense as dialysis is a HUGE financial drain for them, of course. My first nephrologist told me that THEY, that is nephrologists, don’t typically see patients until the patient is into Stage IV. I remember responding that that certainly seemed rather counter productive. He agreed.

My PCP at that time referred me in to that nephrologist based on the sudden drop in my renal function and an onset of moderate anemia. So my PCP was pretty proactive. Thus, I’d definitely say that you should vote with your feet and get to a different PCP plus I’d move heaven and earth to get an appointment with a nephrologist.

I totally agree with Mr Kidney—now is a ceitical time and you’re going to live with this long term. You want people on your medical team who understand that and are committed to helping you manage this absolutely as well as possible.

I think we each need to remember that physicians are human. Some are certainly not terribly effective with most patients nor committed to their professions. There are definitely good doctors, there are also definitely poor doctors. And lots who fall in the middle.

I need good doctors who are able to get a handle on my case specifically. If the doctor doesn’t match those criteria, I vote with my feet and get myself out of his or her office! I do my research and select another doctor. When I find good doctors who develop a decent understanding of my case, I latch on to them and work to establish rapport with them. We then work together to develop and implement a solid treatment plan for me.

Let us know how this turns out.

Jayhawker

[Bassetmommer NKF Ambassador]

HI Dbeck,

couple of questions: Your kidney function went up ten points, is this correct? Are there underlying issues such as diabetes, high blood pressure or other conditions that are impacting your health? Was this a single time reading or has your GFR gone up and down before?

So the issue is getting into see a nephrologist at stage3 is difficult because they see so many patients at later stages. BUT, that doesn't mean you can't see one. I asked the questions above because maybe your doctor feels that if there is an underlying condition that is impacting our kidney that he wants to resolve that first. Just guessing.....

Your first concern is finding a doctor that is there for you. It sounds like your PCP is not answering your questions. You said it yourself they were incompetent, which means you do not trust them. AND you feel they don't care. Why would you stay with a doctor like that?

[Kbressler NKF Peer Mentor NKF Ambassador]

Find a Nephrologist that your insurance will cover and go see them. Definitely would find another preferably internal medicine doctor to see.

[HealthBuddyMelissa]

I am lucky the insurance I have does not require me to have a referral. I would start with your doctor and explain to them that you would have much ease of mind if they would refer you to a nephrologist. My PCP requested that I let her follow me for kidney issues as it really is my only health issue and she does not much for me outside of annual exam. I told her no I would stay with my nephrologist for kidney issues.

[lowraind]

I have not said this in a while, but I firmly believe that we should do what we would be doing at stages 4 & 5 before we get to those stages. Some nephrologists wait until later stages and then refer patients for dialysis and/or transplant. I do not want either, so I try to do all I can to get to stages 4 & 5.

[Jayhawker in reply to lowraind]

I agree; by waiting until we’re at Stage IV or V there really is little a nephrologist can do other than help balance electrolytes, deal with blood pressure issues related to fluid retention, and watch us to determine when to start dialysis as well as refer us for transplant eligibility testing. Oh, and they provide renal failure education. This really isn’t an effective medical care model at all.

Jayhawker

[WYOAnne NKF Ambassador]

Yes, I agree with everyone that you need a new PCP and maybe an internal medicine doctor would be a good choice. When I was first diagnosed I was under the care of an internal med doctor. Mr_Kidney's advice about going to healthgrades.com is how I found my doctor. It's a way to find out who the top 10 doctors are in your area. Need to find someone you can trust, will explain things and one that believes what you tell him.

Check with your insurance about seeing a nephrologist. I made an appt with a nephrologist in my area without a referral. He saw me through my transplant and for 10 years after till we moved to a different state.

And like others have said, you need to be your own advocate! Speak up, ask questions and tell them what you want and need! It is your health and your life, as Mr_Kidney said.

Keep us posted.

[Dragonfly1968]

I agree 100% with what everyone is saying about getting a new PCP. Mine cares little to nothing about abnormal creatinine, BUN, gfr or tsh but paid attention only to my potassium level. Hello!!!!! Potassium correlates with kidneys. She wanted to change one of my meds from one of my specialists and I told her I’d like to run it past her before I said ok—mainly since NONE of my medications are prescribed y her. She got a bit out of sorts and told me just to deal with them then but I should know that she trumps ANY other type of dr. Said she changes people’s meds all the time. That was the cherry on the cake. So I decided to go with an internist who is in the same group with my oncologist. My rambling is simply that it’s YOUR health and body. Not a PCP who gets to decide at what point you see a specialist. I had UTI for years—sometimes upwards of 4 and it took YEARS for her to finally say I should see a urologist. I wonder how long she’s wait with my metabolic levels. I went to an endocrinologist on my own because my tsh was way to low under the range and she informed me that she likes to keep women on the low end because they tend to do better. By the time I got in with my endocrinologist my tsh was 0.1. Long story short. If you are worried about it and don’t feel you got the right answer or even an answer find another dr. If your insurance requires a referral then find a PCP now. If it doesn’t, find a good nephrologist while you’re in the process of finding a new PCP. Word of advice— if you decided to find a new PCP and have tests done by any specialist ask them not to send them to your current PCP but you keep copies of the results. Some PCPs get very offended when a person decides to go to another PCP.