I'm new here (hi!). I have ADPKD, diagnosed about 4 years ago and my mother was diagnosed about 15 years ago. Both of us are still early stages.
Moved to Houston 2 years ago and found a nephrologist right away, based on (very few) reviews. He didn't seem to have answers to my questions and always prescribed meds, so I switched to another nephrologist that my PCP recommended. While I like and trust him more, he missed testing my parathyroid even though I told him my mother has secondary hypoparathyroidism. When I called his office to ask for a new lab form his nurse actually argued with me. This was months ago, and I'm not due to see him again until January.
I had regular bloodwork done last week and asked my PCP to add PTH, it came back hyperactive (120). So now I'm having doubts about my new nephrologist, and especially his nurse.
Anyone have advice on finding "the right" nephrologist? My internet searches seem to turn up more dialysis centers than actual doctors.
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Laurefin
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Hi and welcome to the community.I've found a reliable site to find someone in your area. Please go to healthgrades.com/find-a-doctor and when it comes up enter the specialty and the city. It's dependent on folks who use the site to add a review, good or bad, to help future users.
HI Laurefin,Give you current doctor a heads up. Tell him what happened, how the nurse argued with you and how you are concerned with continuing with the practice. The nurse had/has no authority to argue with you. Your request for the lab was essential and should have been part of the renal work up. I bet you the doctor knows about this nurse and if he doesn't he should. Nurses are the best, we would be lost without them. But sometimes, one will practice out of their scope and not only would her license be in question but so would the doctor's. Speak up. If the doctor defends her, then I would seek someone new and I would tell him that.
Agree! We also look at nurses and doctors separately...not letting one influence our opinion of the other. Occasionally, the nurses will overstep their role and one will need to go over their heads to the doctors. We had that happen recently - we have a wonderful urologist who assigned a nurse to treat my husband. So, the nurse asked my husband to do 4 to 6 caths a day which is impossible to do for those on dialysis. We stepped up and asked her to consult with the doctor and she quickly backed down. It's a rare world when everyone up and down the line is completely in sync; generally one or the other won't be in the examining room and part of the discussion, etc. I wouldn't throw out a gem unless the gem itself has flaws.
Oh, please don't dread it. Simply call the office, tell them about your parathyroid finding, and ask that the nephrologist contact you about the "next steps". You can either tell him about the missing lab and his nurse's behavior during that conversation or at your next in-person visit. It's good to advocate for yourself-just be yourself and simply state the facts and your needs. One can even practice in advance so delivery is smooth and meaningful. You can do it!
Well said, Darlenia! We do need to become patient advocates for ourselves and your suggestion is so well advised. Until my pre-diabetes and CKD diagnoses, I'd always relied solely on what a doc did or didn't do for me. Now, I research myself and feel much better equipped in asking questions and stating concerns or problems.
Agree! I'm not normally one to speak up, but when I was diagnosed with CKD, my nephrologist told me I had ADPKD and that at GFR 19 it was too early to get evaluated for a transplant. ("Why get a transplant when you're still feeling well?") That was inconsistent with everything I had been reading so I went back to my PCP and asked if he could for a referral to a nephrologist at UCSan Francisco which was farther but reputable as one of the top teaching hospitals and transplant clinic. He absolutely supported it and affirmed that I should definitely seek out the best care. Well as it turned out, my original nephrologist was wrong on both fronts: My new nephrologist said (and confirmed many times by others) that I did NOT have ADPKD (my cause was actually IgA Nephropathy) and that I should absolutely get an evaluation for transplant right away to accrue time on the wait list even if I didn't feel terrible or was on dialysis yet. Bottom line: advocate for yourself, learn all you can about CKD. It will help you better assess the quality of your care and understand the questions you need to ask. Best wishes on finding a great nephrologist.
DorisL, Had you accepted the critical blunder, misdiagnosis and advice of your first nephrologist without requesting a second opinion, the consequences could have had a needlessly tragic result! Thank goodness your PCP referred you to a highly reputable hospital and transplant clinic for a correct diagnosis and excellent treatment!
Your post should be a wake-up call for all patients with serious chronic health conditions to learn all they can about their diagnoses in order to self-advocate for themselves.
Sadly, I fear I'm not alone in having held an overly inflated trust in medical advisors. We only have this one precious life and it behooves us all to do whatever we can to learn and manage our conditions for the healthiest life possible.
Thank you for your good wishes. I become attached to my docs and making the decision to change is difficult but I learned earlier when changing cardiologists, the improved care and treatment was well worth the effort. Best to you and hope you'll continue to post about your journey. We all benefit from sharing with one another.
I used healthgrades.com/find- a-doctor myself. About 4 years ago we moved to a new state and I had to find a PCP and a nephrologist. What I like about this site is there are also reviews from people that can help you decide who is best for you.Good luck.
You will find that this level of 120 in someone with CKD is barely over the limits of my laboratory acceptable values (to 100). Those on dialysis can experience much higher values, with 300 being acceptable. About 10 years ago my calcium and phosphorus WNL but PTH was over 3000, so don't panic yet. You could ask him/her if a value of 120 is something to be concerned over. He probably didn't mention this, because in the grand scheme of high/low values this could be fairly normal. Most aren't prescribed binders until levels reach over 300+ consistently for a few months. Surgery is usually only indicated after meds like sensipar, zemplar, binders have not produced positive impact after 12 months. My levels were between 800 to 1500 for over 6 years with little improvement, then 2000 to 3500 for a year. That is when they've gone into overdrive and need surgical intervention to save the bones. JMHO though. Take a deep breath.
Laurefin, An excellent website I use for locating docs/specialists in my city with comments by actual patients is: healthgrades.com I am also requesting a new nephrologist due to lack of any guidance from the present one. Good luck in your search.
I am so sorry that you had such a horrible experience.
Unfortunately, many medical personnel lack professional conduct and continue to get away with it unless it is pointed out to the person above them.
I am in total agreement with the thoughts of the members below about letting your doctor know about this experience.
I have seen it myself and in caring for an elderly parent. Very often doctors are busy don't know about what is going on beyond the exam room doors unless someone points it out to them.
When we let my mother's doctor, who is also Oncology Chief of Staff, know about a very dangerous and unprofessional incident in their CT department by a tech, he was most appreciative and I reiterated his response above.
The next time my mother needed a CT, there were signs visibly posted so that our experience was not repeated.
If your doctor is decent, they will be appreciative as they would not want less than quality personnel working with them and representing their practice.
I have had incidents with less than patient oriented doctors of whom I have discharged.
I saw signs in the hall of their teaching hospital that they practice in, listing a number to call for patient advocacy if you feel that you have not been spoken to/ treated correctly.
Making that call is the first step in self advocacy to give yourself the best and most well deserved medical care.
If you are unsatisfied with the response or care from any doctor, you have the right to a second opinion or to find someone who is communicative and competent.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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