My neph and what he's being responsible for

[KarenInWA]

Hi everyone.  I want some of your thoughts and opinions on something.  I have been under the care of the same neph since 2000.  In that time, I have been taking 10mg of Lotensin (benazapril) a day to maintain BP and lower protein in the urine (it was as high as 2.1 gm at one point, is now hanging out at around 0.3 gm), and have also developed gout/high uric acid and high PTH in that time.  However, my neph will only take care of the benazapril, he is leaving my gout treatment to my primary care doc and my PTH to my endocrinologist.  The original reason for seeing the endocrinologist was for a benign lump on my thyroid, the hyper-PTH became a secondary problem that she now treats.  I am on medication for both of these conditions from both of these dr's.  My question to you is this - is this normal?  I saw a 2nd opinion neph last week, and he thought it was a bit strange, since all of this is related to my KD.  Any thoughts on this will be much appreciated!

Karen

[Wallyz]

Cyrus Cryst

Get rid of your first Neph and talk to this guy. That's my opinion.

[peleroja]

I don't know about anyone else, but my neph treats my PTH with Calcitriol.  When it's up, she prescribes Calcitriol, when it goes down I go off the Calcitriol.  It's usually a 6-8 month cycle.  Don't know what to tell you about the gout, sorry.

[paris]

My neph manages all my meds, including Hectoral for PTH.  Gout is directly related to kidney disease.  Mine prescibes alloburinol since my first go around with gout.  It has done wonders.  Why wouldn't he want to manage all the secondary problems caused by kidney disease?  That doesn't make sense.  Mine orders all my labs and then shares them with my primary doctor. I really think you should change doctors -- just my     I changed doctors within the office I go to.  Best thing I ever did.  You need someone who listens to you and treats you intelligently.    Your neph should be dealing with all things related to kidney failure.   Let us know what you decide.     

[monrein]

I'd lose that neph for sure and I'd tell him why.  Be sure to find another who'll take you first though.

[G-Ma]

When I was in center my neph treated everything "except" sleeplessness and depression....however I found a good primary Dr for diabetes etc..Davita also refused to fax any labs to primary Dr so I walk in my "report card" once a month.  Hopefully the new independant center that I will be transferring to will work closer with medical Dr.  Would be nice, but yes I would lose the first neph.  "poof, gone, like Davita out of my life."
Ann

[David13]

It sounds as though your nephrologist is trying to pawn as much of your care off onto other physicians as he possibly can.  Try to find one who will at least attempt to treat your medical problems (and you) as a whole. The nephrologist you saw for a second opinion might be a good place to start.

[Ang]

your  neph  should  be  attending  to  all  your  associated  ckd  ailments.

if  not  find  one  that  will  or  if your  happy  with  your  neph (since  2000)  make  sure  that all  your  doctors  are  in  regular  contact  and  each  knows  what  is  going  on.

[KarenInWA]

Thank you, everyone, for your thoughts on this!  I will be seeing my 1st neph on Oct 16th.  I will also be making the decision to get a kidney biopsy, which will be done by the 2nd neph.  If I were to get that done thru the 1st one, it'd be done by a radiologist w/no overnight stay at a hospital that is having budget problems.  With the 2nd neph, he will be the one who does it, and there will be an overnight stay.  I am much more comfortable with that!  I'm leaning towards getting the biopsy so then I'll know for sure what my CKD is.  My first neph has used both "renal insufficiency" and chronic glomerulonephritis with me, both based on my labs.  I've also had 2 kidney ultrasounds done over these past few years. 

I am also on calcitriol 0.25 mcg 4 times a week for hyper-PTH, and allupurinol 100mg 1/day for gout.  I hate gout, and I never want to go through it again!  2nd opinion neph seemed more alarmed about my having gout than 1st neph did.  Reason being because it's so rare in young women.  I hate being a medical anamoly! (I've also had a rare heart defect that I was born with, but it wasn't discovered until I was 30! Thankfully, that was fixed by a wonderfully expensive procedure that my insurance at the time paid for 100%.  That's what I got for having a bad gall bladder.  Go in for routine gall bladder surgery, come out with a heart defect!)

Karen

[Wayne]

Hello Karen,
Sounds like you have an interesting neph.  Mine treats me for just about anything.  I have to catch myself sometimes because I will call him first(usually his nurse) if I have a cold before I call my PCP.  I love my PCP, but obviously I see my neph 10x as many times a year as I do my PCP.  As far as the gout, I too suffer from it, and it is a pain like no other!  I take allopurinol as well, but I can tell you that some prednisone knocks an attack out real quickly.

[Romona]

Go with your gut on the overnight stay. I was laughed at by my husband, sister and nurses at the hospital when i packed a bag for "a simple out patient procedure". I had a hematoma after the biopsy and had to stay for 4 days. I call my neph about so many things. My PCP is hesitant to do anything because of my transplant.

[RichardMEL]

I agree with the others. That first neph seems a bit odd... definitely the secondaryhyperparathyroidism (try and say that 3 times in a row real fast ) is a KD related issue and surely all of that should be co-ordinated by the neph. If your PTH is high perhaps you should be looking at something like sensipar or somilar to help with that. Calcitricol is good, but it won't help if your calcium and PTH gets too high. I found Sensipar a real godsend and saved me from getting my throat cut (so far ). It just makes sense to have the one doc looking after all that then leaving some bits to others...

Besides, and this is the main point, it sounds like you are way more comfy with the way the 2nd neph is approaching things - so go with your gut instinct and ditch the first and go with the second

You know it's the right thing to do!!

[pelagia]

Stephen's neph has always managed all of his meds that relate to the complications of kidney disease, except for the bp meds before the transplant, for which he always coordinated with the PCP.