How to choose a nephrologist?

Hello,

I am a patient who was recently diagnosed with chronic kidney disease. My 24 hour creatinine clearance is low and my GFR is low-ish. I want/need to meet with a nephrologist to find out some answers to questions I have, particularly, how long I have until I need to consider dialysis.

Since I know that I want to do home hemo, it seems logical that I would choose a center near my home that offers it, then talk to a nephrologist that works with them and, hopefully, is part of a larger team of nephrologists. This way, I can establish a relationship with a nephrologist team that will continue through the dialysis treatment.

However, I called the local DaVita facility that offers home hemo and found out that, not only are they a “closed” facility, but their dialysis docs do not see patients outside of the unit. This seems counter productive to me, particularly since I had a partner who was on in center hemo and there were many times when he could have used an in-office nephro consult outside of the facility.

Is this the norm, or is this just the DaVita way of doing things? Am I correct in my thinking that I want a nephrologist team to follow me from CKD through ESRD and dialysis? What is the best way to go about finding a nephrologist?

Thanks for any help or advice you can offer.

Best regards,

Antonio

Hi Antonio, and welcome to Home Dialysis Central. If you don’t mind, what is “low-ish” with regard to your GFR?

There is another thread right now that’s talking about the “how to choose a nephrologist” topic–though you can’t tell by the thread name. It’s here: http://forums.homedialysis.org/showthread.php?t=1257, and you may get some good tips from it. Others have very recently run into similar issues as you have, so your concerns are quite timely.

[QUOTE=Dori Schatell;11663]Hi Antonio, and welcome to Home Dialysis Central. If you don’t mind, what is “low-ish” with regard to your GFR?

There is another thread right now that’s talking about the “how to choose a nephrologist” topic–though you can’t tell by the thread name. It’s here: http://forums.homedialysis.org/showthread.php?t=1257, and you may get some good tips from it. Others have very recently run into similar issues as you have, so your concerns are quite timely.[/QUOTE]

Hi Dori,

Thanks for your reply and the referral to the other thread. I will definitely read it and find out what I can. As far as my GFR goes, it’s nowhere near dialysis, which I understand one looks at when it’s 15, but it is 59-60, so my PCP advised me to meet with a nephrologist. I wasn’t happy with the referral he gave me, so that’s why I posted here. I am trying to find out how long I have, with these numbers, until I will be close to needing dialysis. It’s kind of complicated by the fact that I have insulin dependent diabetes, hypertension, HIV, and am on about 17 medications that I take daily.

Any input you can offer is greatly appreciated!

Antonio

Well, right now you have a “cushion,” as you know, of about 45% kidney function. How quickly you’ll progress will depend on a number of factors, including:
– How well controlled is your diabetes? (How are your HbA1c’s?)
– How much of the time are you able to keep your BP in the target range?
– Do you smoke? (Please say no. :-))
– Are any of the meds you have to take damaging to the kidneys?
– Do you drink plenty of fluids to flush out those meds?
– What was your GFR last year? 2 years ago? 3? (this can help determine the “slope” or rate of progression–though a sudden event can make it slip faster)

At any rate, seeing a nephrologist–and finding one you can trust and work with–is clearly a great move, and so is joining our forum. You’ll find lots of good info here. You might also want to read through the section on our Life Options site on chronic kidney disease (CKD) and how to protect your kidneys. It’s at: http://www.lifeoptions.org/kidneyinfo/ckdinfo.php.

[QUOTE=Dori Schatell;11670]Well, right now you have a “cushion,” as you know, of about 45% kidney function. How quickly you’ll progress will depend on a number of factors, including:
– How well controlled is your diabetes? (How are your HbA1c’s?)
– How much of the time are you able to keep your BP in the target range?
– Do you smoke? (Please say no. :-))
– Are any of the meds you have to take damaging to the kidneys?
– Do you drink plenty of fluids to flush out those meds?
– What was your GFR last year? 2 years ago? 3? (this can help determine the “slope” or rate of progression–though a sudden event can make it slip faster)

At any rate, seeing a nephrologist–and finding one you can trust and work with–is clearly a great move, and so is joining our forum. You’ll find lots of good info here. You might also want to read through the section on our Life Options site on chronic kidney disease (CKD) and how to protect your kidneys. It’s at: http://www.lifeoptions.org/kidneyinfo/ckdinfo.php.[/QUOTE]

Hi Dori,

Thank you for giving me the estimate of my level of kidney function at this point and the tips for slowing the progression of CKD. In answer to your questions:
– My HbA1c’s generally run in the 6’s, although my last one was a little high (7.6). However, my endo said it was pretty good, given that I am dealing with gastroparesis (slowing of the emptying of the stomach). Since he thinks that the GP may not be diabetes related, but caused by a medication, it may be possible to deduce what the medication is, and then eliminate it from my regimen. This would allow me to have even better control of my BGs.
– When checked at the doctor’s office, my BP usually runs about 110/70, which I think is good. Therefore, I think it is probably this low all the time. Although now that we are talking about it, I realize that it would probably be a good idea to get a home BP machine so that I could monitor it more closely.
– I DO NOT smoke, never have, never will! :>))
– I have not heard that any of the medications I am on are nephro toxic, although that is one of the questions I have for the nephrologist.
– I drink about 100 ounces of fluids daily, so that should be adequately flushing my system.
– I just had my first abnormal creatinine clearance a few months ago, so they did not start monitoring my GFR until then. Therefore, I do not have historical numbers for comparison and analysis.

I learned a lot from what I read in the first thread you referred me to. It sounds like it is very important to have a good doctor (nephrologist) who will see you in and out of center, regardless of his level of reimbursement for any particular visit. It also sounds like it is much more important to choose a great physician than a dialysis center that is convenient to my home, especially since I will be doing home hemo and therefore not having to go to a center 3-4 times weekly, except in the beginning when I am being trained. Therefore, I have already made an appointment with a nephrologist I know that my former partner saw for his glomerulonephritis and hypertension, before he went on dialysis. He absolutely hated the constant parade of new docs at the center, and echoed the same frustrations of having to see the doc in center that the posters on this forum have stated. Therefore I will see him for my pre-dialysis care and then go to a center that he works with for my home hemo when it becomes necessary. Furthermore, after reading about the advantages of nocturnal hemo over short daily, I will not pursue DaVita any further, since they only offer short daily.

Thank you again for your posts. They have been very helpful!

Best wishes,

Antonio