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Author Topic: I'm very upset right now  (Read 8772 times)
stauffenberg
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« Reply #25 on: October 11, 2007, 07:43:27 AM »

In the course of my many medical examinations for the transplant I had after 8 years of using a permcath, there was found to be NO narrowing of the arteries around the heart.
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paddbear0000
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« Reply #26 on: October 11, 2007, 10:01:50 AM »

Adam, I just read this for the first time! I'm so sorry to hear about your troubles. I hope things get better soon!   :cuddle;
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Adam_W
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« Reply #27 on: October 11, 2007, 12:18:26 PM »

I'm scheduled for fistulagram number three tomorrow morning. There is so much concern over my access right now that my doctor personally called me about it, which is pretty rare. Usually it's the dr's medical assistant that makes calls. Depending on what is found tomorrow, they said that I may have to go back to my vascular surgeon who put the graft in, and he may have to go back in there and make a revision. That doesn't sound fun, but I'll do whatever is necessary to save this access. Sometimes I just want to find the biggest hole to curl up into.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
paddbear0000
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« Reply #28 on: October 11, 2007, 12:25:59 PM »

Hopefully they get it right this time!  :grouphug;
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Joe Paul
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« Reply #29 on: October 11, 2007, 12:33:13 PM »

That sucks Adam, but I hope whatever they do works and isn't painful
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
kitkatz
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« Reply #30 on: October 11, 2007, 05:14:18 PM »

You will probably find me down in the hole when you get there!
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Adam_W
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« Reply #31 on: October 11, 2007, 06:00:08 PM »

You will probably find me down in the hole when you get there!
Cool, we can have a "hole ho-down".

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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
Rerun
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« Reply #32 on: October 11, 2007, 06:15:57 PM »

Try and keep your HCT around 33 and not more even though they will try to push more EPO on you for financial purposes.  Also, ask your surgeon or Neph if is would help taking a baby aspirin (81mg) once or twice a week to keep your vein cleaned out. 

I would have quit dialysis if it had happened to me a week later.  Seriously, one fistula revision EVER is too much for me.

Good Luck and hang in there. 

Again,..... there is a "doctor" who dialyzes in my center with a catheter and no intentions of getting a fistula.  What does that tell us?
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Redbomb
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« Reply #33 on: October 11, 2007, 06:56:24 PM »

Again,..... there is a "doctor" who dialyzes in my center with a catheter and no intentions of getting a fistula.  What does that tell us?

What that tells me is that 1) He doesn't like to swim.  2) He doesn't S.C.U.B.A Dive, 3) If he has to follow the same rules I do he's not taken a shower since it was put in.

I want to do all of those things again, so I can't wait to get this DAMN thing out of my chest!
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skyedogrocks
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« Reply #34 on: October 12, 2007, 06:38:20 AM »

Hope the fistula gram goes well Adam.  Rob knows your annoyance all too well as he has issues with his fistula too.  Good Luck!
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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
KT0930
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« Reply #35 on: October 12, 2007, 09:57:49 AM »

Thinking of you, Adam. Hope it went/goes well today.
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
Adam_W
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« Reply #36 on: October 12, 2007, 10:28:31 AM »

Well, I just had the fistulagram, and they found NO stenosis. That's a good thing, but it still doesn't explain why I'm having these problems. I know an infection can cause the whistling sound that I'm having, but I have no other symptoms of infection. The thrill is still kind of going in and out. Sometimes it will be nice and strong, and sometimes I can't feel it at all. They didn't want to give me a catheter yet, because they are still sure these problems can be resolved. I wish I had the same confidence, and I'm probably going to talk directly to my doctor himself, and demand a catheter until we can find this mysterious problem with my graft. It's either that, or not dialyze, and I'm definitely not going to stop dialyzing any time soon. I'm waiting to hear back from my nurse who is getting all my records from the kidney institute. I am nervous about doing my dialysis today, but I didn't dialyze yesterday so I don't really have a choice. I am going to at least wait to get on the machine until after I talk to my nurse, and I may see if I can go into the centre so she can actually see for herself what's going on when I cannulate and do my treatment. I don't know when this is going to end.  :banghead;

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
paddbear0000
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« Reply #37 on: October 12, 2007, 10:36:11 AM »

Could your BP be fluctuating a lot? My BP can go from super high to super low and back again in a matter of hours or minutes. That might explain the fluctuations of thrill and excessive bleeding.
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Laurie
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May 13, 2008

« Reply #38 on: October 12, 2007, 12:51:48 PM »

Adam, I hope they get it figured out soon  :grouphug;
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
kellyt
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« Reply #39 on: October 12, 2007, 01:21:28 PM »

Good Luck.  I hope they figure it all out SOON!   :grouphug;
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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
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« Reply #40 on: October 12, 2007, 01:35:16 PM »

Adam, I'm sorry to hear about your graft problems, and I hope they can get it repaired.

It seems like it's always SOMETHING, doesn't it??

I had been having problems with excessive bleeding and a spot on my fistula where it looks like the skin is getting kind of thin. I had a fistulagram and fistula-plasty (sp??) last week (it had been 6 months since my last one) and it seems to be working better now. There was one area of stenosis that was cleared out.

But they want me to go back to the vascular surgeon and see what he thinks about a revision or new fistula. So I am kind of pissed. Aren't fistulas supposed to last longer than 2 years? And did I do something wrong that this one has to be revised or replaced so soon?
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Lee Anne

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donnia
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« Reply #41 on: October 12, 2007, 07:00:41 PM »

 :grouphug;  Hope everything goes well at dialysis!!!  Saying a prayer for you Adam.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
Black
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« Reply #42 on: October 12, 2007, 09:28:05 PM »

...  I may see if I can go into the centre so she can actually see for herself what's going on when I cannulate and do my treatment. I don't know when this is going to end.  :banghead;

Adam

How did it go?  What did the doc say?  Did the nurse get to watch?
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Lorelle

Husband Mike Diagnosed with PKD Fall of 2004
Fistula Surgery  1/06
Fistula Revision  11/06
Creatinine 6.9  1/07
Started diaysis 2/5/07 on NxStage
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