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Author Topic: My neph and what he's being responsible for  (Read 5713 times)
KarenInWA
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« on: September 21, 2008, 09:48:51 PM »

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
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Wallyz
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« Reply #1 on: September 21, 2008, 09:59:46 PM »

Cyrus Cryst

Get rid of your first Neph and talk to this guy. That's my opinion.
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peleroja
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I have 16 hats, all the same style!

« Reply #2 on: September 22, 2008, 07:58:08 AM »

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.
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paris
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« Reply #3 on: September 22, 2008, 02:20:49 PM »

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  :twocents;   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.     :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
monrein
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« Reply #4 on: September 22, 2008, 02:30:45 PM »

I'd lose that neph for sure and I'd tell him why.  Be sure to find another who'll take you first though.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
G-Ma
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« Reply #5 on: September 22, 2008, 02:55:25 PM »

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
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
David13
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« Reply #6 on: September 22, 2008, 03:10:06 PM »

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.
« Last Edit: September 23, 2008, 04:32:12 PM by David13 » Logged

“The first human being who hurled an insult instead of a stone was the founder of civilization” - Sigmund Freud
Ang
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« Reply #7 on: September 22, 2008, 10:10:19 PM »

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.
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live  life  to  the  full  and you won't  die  wondering
KarenInWA
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« Reply #8 on: September 22, 2008, 10:21:11 PM »

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
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Wayne
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Martin (the snorer) & Mack (cat w/renal failure)

« Reply #9 on: September 27, 2008, 12:54:40 AM »

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.
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3/01 diagnosed with fsgs
7/07 listed
4/08 fistula surgery
10/08 pd catheter placed
12/08 started pd
2/09 started hemo
Romona
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« Reply #10 on: September 27, 2008, 09:34:05 PM »

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.
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RichardMEL
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« Reply #11 on: September 28, 2008, 01:41:02 AM »

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!! :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
pelagia
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« Reply #12 on: September 28, 2008, 06:53:01 AM »

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.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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