My 19yr old's nephrologist told me he wont do anything more for her high BP, HELP!

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Today I attended Grand Rounds at the dialysis center because I needed answers as to why my 19yr old has extremely high blood pressure-even resting (220/153 at least 1X daily), only managed by various medications.  I asked if we could change the doses, check her hormone secretions in her kidneys (her pediatric nephrologist suggested taking them out due to her not urinating), her doctor said he was not going to do anything else for her BP, he has done everything he is willing to do.  I am truly shocked, considering last week the doctor at our vascular access center said there were many things that could be done which initiated my attending to ask.  I truly need some advice.

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  • Posted

     Sryan,

    How worrying and disappointing for you both!  Do not stop chasing the righty answer.  I had similar HBP problems and found that one of the drugs- Candesartan- was raising my BP!  Now on a more normal ACE inhibitor and have some control!

    Good luck,

    KenR

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  • Posted

    Hi syran. I'd suggest seeing a new doctor asap. I find it hard to believe any doctor would be willing to accept that.

    I was in similar blood pressure however was well controlled within a month of starting sstatins and coversyl

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  • Posted

    Well, this is just not good enough. You and your son need answers.

    Do you have options to seek a consult with another nephrologist? If so, that may be a place to start. 

    My BP ran very low and would suddenly plummet even lower--definitely as problematic for my health as high blood pressure. My regular nephrologist referred me out to a nephrologist with a university research hospital who specialized in BP issues. He immediately focused on my BP. He pulled me off the low dose of diuretic I had been prescribed. He also took me off a low dose of BP medication I had been prescribed.

    My BP is now in very good range although it is more variable than I'd like. But it is often close to 117/72 now. I rarely catch it above 122/78. It no longer suddenly plummets. And there has been some improvement in my renal function with this improvement in my ZBP. This is something the university nephrologist had thought would happen with higher BP. So it was well worth the outside consult. 

    I do still see my regular nephrologist. I don't expect to go back to the university nephrologist. But I'm certainly glad I went for the consult last summer.

    So, definitely don't give up. A fresh set of eyes may be very helpful for your son.

    Marj

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  • Posted

    Thank you!  I am in shock about the lack of hope the doctor showed.  I am going to find a new doctor.
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  • Posted

    My prmary doctor put me on lisinopril years ago.At my dialysis center, my kidney disorder needed an extra blood pressure medication because my lisinopril 20mg was not controlling my blood pressure, so my kidney doctor put me on another

    medication called amlodipine

    10mg (generic for norvasc).

    Sometimes is lowers it, sometimes

    it doesn't but it only happens

    sometimes at the dialysis center.

    Both are taken once a day.

    I hope my information helps you

    Good luck in your search for an effective treatment

    I take. no medication prior to going to dialysis because they told me the dialysis treatments takes out the drugs, so I take all my medications after each dialysis treatments.

    Sometimes one pill is not enough.

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    • Posted

      Thank you!  She is on 4 medications and Nifedipine which is as needed.  She goes through 90 of those in about 12 days, and yet her doc looked me in my face and said he was not going to explore anything else.  Her pediatric nephrologist suggested removing her kidneys as she has 0 function, when I suggested that he looked at me as though I had 5 heads.  I now understand that not every doctor becomes a doctor to save lives, rather the paycheck and title.  I am so frustrated
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  • Posted

    Hi,

    I too had difficulty getting stable  BP and like another respondent found that the Candesartan that I was prescribed for high BP was actually raising my BP.  My doctor was doubtful of this but I insisted on going to a normal ACE inhibitor (lisinapril) and my BP came down!  Doctors do not know everything and you just have to keep trying and get new opinions!

    The best of luck to you and your daughter,

    KenR

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    • Posted

      I couldn't agree more with your suggestion. The blood pressure management can definitely be tricky!

      My nephrologist had tried several different BP meds with me. They were actually making my BP worse rather than better. The result was blood pressure that was running extremely low and suddenly plummeting (4-5 times a day) to alarmingly low levels (64/42).

      I saw a second nephrologist last summer. My BP suddenly plummeted as I stood to go into the exam room. So finally a medical person and his nurse observed what I had been describing. They immediately pulled me off all BP meds.

      Now my BP generally falls in the pre-hypertension range. It is definitely more variable than it used to be when I took the BP meds. But overall I feel MUCH better and there has been a modest improvement in my renal function.

      So, I concur. Doctors don't know everything. A second, third, or even fourth set of eyes looking at a challenging case is always a good idea. And, good doctors will support a patient's request for outside consults to gather as much information as possible.

      Marj

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