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nephron
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« on: May 31, 2010, 05:31:20 PM »
I am a nephrologist from Detroit. I write the blog Precious Bodily Fluids http://pbfluids.com (hopefully I got that right) and one of my posts caused some anxiety among the members of IHD.

I have one patient who told me about IHD a while ago and says only great things about it.

Joel Topf
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: May 31, 2010, 05:34:32 PM »
Thanks for joining us nephron! I look forward to your posts!  :welcomesign;

okarol/admin
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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
Dianejt
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« Reply #2 on: May 31, 2010, 05:38:03 PM »
Welcome to IHD. What post is it you are refering to that upset someone?
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caregiver to husband Frank

bladder cancer 1994
renal failure April 2009 due to blocked right ureter. Left kidney 20% function
November 18 2009 surgery to remove right ureter.
April 3, 2010 removal bladder, prostrate, left kidney.
June 11, 2010 started Hemo @ hospital
July 2, 2010 Embolized right Kidney due to hemoraging of tumor
September 11, 2010 RIP my love
cariad
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« Reply #3 on: May 31, 2010, 05:53:20 PM »
 :welcomesign; Joel

So glad you decided to introduce yourself. I read your response on your blog and suspect MooseMom will be very grateful for the information. I spent two (not so happy) years in Detroit, but my nephrologist at U of M was a great guy.

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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
RichardMEL
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« Reply #4 on: May 31, 2010, 06:05:36 PM »
g'day Joel and welcome to IHD!! I think it's great to geta  professional from "the other side" with us. We already have at least one other neph (kidneydoc) and I'm sure there are others lurking. Hopefully you can contribute a lot here, but also learn a little more about how it feels from the patients perspective. I really love when techs, doctors and so on join our site because not only can you get an idea of what it is like for us, but also there's less of a sense of "us and them" but more one of community fostered - and I think that is very important!

RichardMEL, Moderator
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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!
jbeany
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« Reply #5 on: May 31, 2010, 06:16:55 PM »
 :welcomesign;

Thanks for joining in on our discussion!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
Zach
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« Reply #6 on: May 31, 2010, 06:21:13 PM »
I read Precious Bodily Fluids every week or two.
It's great to have you join our community!
 :beer1;
« Last Edit: May 31, 2010, 06:27:04 PM by Zach » Logged
Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
natnnnat
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« Reply #7 on: May 31, 2010, 06:36:32 PM »
Cool blog.  Interesting comments about Vitamin D.  Gregory is on a low ongoing dose of D. 
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MooseMom
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« Reply #8 on: May 31, 2010, 06:40:50 PM »
"CKD" and "anxiety" are synonymous in my personal dictionary.

I was just eager to hear what exactly are the numerous implications of the fact that relatively few patients progress to stage 4 and/or dialysis.  Is this good news or bad?  Does it mean that this particular renal population is well looked after and ends up dying years later in entirely unrelated circumstances, or does it mean that this population is neglected and die of complications of CKD too soon?

I want to thank you personally for joining IHD and for taking the time to post here. 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
monrein
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« Reply #9 on: May 31, 2010, 08:05:16 PM »
 :welcomesign; to IHD and thanks for joining us.  I look forward to your contributions and will definitely be checking out PBF.
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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
Rerun
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Going through life tied to a chair!
« Reply #10 on: May 31, 2010, 08:24:58 PM »
I was only 24 when I was dizzy and feeling sick and so the "small" town doctor didn't think about kidney failure.  So I was stage 5 and he didn't catch it.  In my opinion that is one way people with CKD die.  It goes undetected.  You know you have it, so you are educated about the prognosis.  I was eating all the wrong dangerous things.  BANANAS!!! (to name one)

Welcome to IHD Nephron (love that name)  I hope you come here to help our members with sound advice.

Rerun, Moderator             :welcomesign;
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Jean
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« Reply #11 on: June 01, 2010, 01:07:34 AM »
Welcome to our site. Your site is very interesting also. You are very brave to open yourself up to a bunch of kidney patients and I appreciate you joining us.
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One day at a time, thats all I can do.
haemogoblin
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« Reply #12 on: June 01, 2010, 07:20:20 AM »
OI

Stop upsetting renal patients!!  :Kit n Stik;

Actually don't.  Any nephrologist who emails on a dialysis forum is pretty cool. 
h




Edited: Fixed smiley error - okarol/admin
« Last Edit: June 01, 2010, 09:21:14 AM by okarol » Logged
Jean
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« Reply #13 on: June 01, 2010, 11:48:59 PM »
That is my opinion too.
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One day at a time, thats all I can do.
peleroja
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« Reply #14 on: June 02, 2010, 09:16:21 AM »
Welcome to the group, Dr. Joel.  I wish all nephs would join and find out what their patients are really thinking!
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