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Author Topic: My nephrologist - is this odd?  (Read 2886 times)
cariad
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What's past is prologue

« on: July 10, 2009, 12:46:35 PM »

I saw my nephrologist yesterday. I like him as an individual, but I am paying him to be a doctor, and I am not sure I am really getting much out of this man. Appointments last 10 minutes or less. He takes my blood pressure, pulse and listens to my heart. (I have a machine for the first two things at home.)

Yesterday, I told him that I had been tentatively accepted into this clinical trial for a transplant, and that we were still on track to have the procedure in September. He then told me that there was no reason to see him again before the transplant unless I had a problem. That could be almost 3 months away, since we don't have a date set in September yet. Does this seem normal? I saw my previous nephrologist every month, and for some reason thought that these visits would become more frequent, or at least hold steady, as the transplant date approached.

Thanks for reading.
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okarol
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« Reply #1 on: July 10, 2009, 02:34:30 PM »

Jenna saw the nephrologist from the transplant team a couple times before the transplant, and was back to her regular nephrologist after that.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
kellyt
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« Reply #2 on: July 10, 2009, 03:33:49 PM »

In late September 2008 we scheduled my living donor transplant for Nov. 5th.  I saw my regular Nephrologist for the last time in late September/early October - before I left for VEGAS (which, BTW, he wasn't exactly thrilled about   :o) and I did not return to see him until April 2009.  I saw my post transplant doctor, who is with the same group as my Neph, but I saw him weekly and then monthly following transplant and then finally made the move back to my regular Neph.

So it sounds "normal" as long as you are not feeling horrible or your labs are off the charts.  Then that would just be a strange request.  Good Luck with your transplant!!!!   :clap;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Romona
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« Reply #3 on: July 10, 2009, 04:01:30 PM »

My nephrologist worked closely with transplant. No sense of doing everything twice. I do see him every 4 months now and transplant yearly.
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paul.karen
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« Reply #4 on: July 10, 2009, 04:01:53 PM »

I see my Neph every three months.
Since i have been getting sicker i do labs once a month that get sent to him.  He has called me in early once to change some meds.

Im not worried about not seeing him as long as he is seeing my labs.  I trust him, i have to trust someone.  He also fills me with free samples of my meds when i see him :thumbup;
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Curiosity killed the cat
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Operation for PD placement 7-14-09
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chris73
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« Reply #5 on: July 10, 2009, 05:24:57 PM »

After my neph referred me to tx clinic for evaluation he told me that i  wont have to see him  anymore unless i have problems (tx clinic is 4hrs away). I had it set up to have bloodwork at nephs office once a month and faxed results to tx clinic, If anything is wrong someone will call me. So far only few calls to make med changes.Express your concerns  to your neph or where the clinical is being done if you feel you need to be"seen". Hope this helps.. Good luck and God Bless!!  Chris
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11/10/07 esrd
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transplant 4/15/08  from close friend and coworker  of 12 yrs. Thanks Jeff!!
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« Reply #6 on: July 11, 2009, 12:05:15 AM »

Sounds about normal to me pre and post transplant.
 I see my local neph ever 2 to three months unless hospitalized, then a week after discharge and every month for 2 months. I also have a neph at my transplant center that I see every 6 months or so. Post transplant, I would only go to the transplant clinic and just kept my local doctors updated.
You are going to Northwestern right?
If so, what's the trial they have going on now?
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
cariad
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What's past is prologue

« Reply #7 on: July 11, 2009, 09:01:29 PM »

Thanks for all the the replies and well-wishes!

What a refreshing surprise to learn that my nephrologist may actually be acting appropriately! I dragged my husband to my last appointment because I have been having such ugly confrontations with this whole medical group, I wanted his take on it. He and I both agreed that this doctor could not have been more eager to get rid of us, and was wholly unimpressed that we were about to undergo this procedure. That is fine, I do not go to that office to socialize, but I wanted to verify that this was not negligence. These responses are reassuring! He did not give me a prescription for any bloodwork, and I did not think to ask. My labs are boring. I can always go to my gp for that if I become curious. If I trust any doctor, it would be my gp.

Chris, yeah, I go to Northwestern. They have quite a few clinical trials going on now - if you go to clinicaltrials.gov and type in Northwestern and whatever procedure you are interested in, it will list everything they are doing. Before I open my big mouth and start blathering on the Internet about the specific trial I hope to do, I want to check with the surgeon that it is OK to discuss it. My understanding is that they want to keep some things quiet. I am probably just being paranoid, but because of the unusual effort they are going to in order to include me in the trial, I don't want to inadvertently talk out of turn (er, type out of turn? You know what I mean.) Sorry, I hate being coy. The minute they assure me that it is ok, I'll probably go on way too long about it....  :flower;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
Chris
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« Reply #8 on: July 11, 2009, 11:09:20 PM »

Cariad,
If you don't like the doc, time to find a new one and one you can somewhat trust. However, I wish I could do that with my pancreas doc/surgeon at Northwestern, we don't get along  :rofl; I like the renal surgeons better.
I did not know about that website, but will check it out.

Northwestern is now touting Michael M. Abecassis, MD, MBA., an Northwestern Medical Faculty Foundation physician, will lead the Comprehensive Transplant Center , which basically regards all research and sharing between scientist, doctors, and a few others around the country that was posted on the patient site of Northwestern. Only read half the article so far though, they should use 1.5 or double paragraph spacing! And while we are at it larger fonts  ;D
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
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