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dialysis.sucks
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« on: November 25, 2012, 03:49:39 AM »

Well, my name is James, I'm 32 and from So Cal, not sure what to say here... :) I started on hemo back in 08.

The short version:
- I've gone through seven catheters
- Two induced comas
- Was told that I might be needing mental help by davita because I went into "shock" halfway through Dialysis. (I would have to sit in my car with the heater on in the dead of summer, shaking and throwing up for hours - literally took a bowl with me to dialysis. Sorry to be so graphic haha)  Turns out, after slipping into a coma at home after a treatment, that I had a severe blood infection FOR MONTHS that Davita knew about, but didn't want to take credit for... Not a Davita fan. Havent had the same reaction since.
- Second time ever using my AV fistula the dialysis nephrologist, against my nephrologist's wishes, decided to use two needles instead of one in the fistula and one in the catheter. Caused infiltration that sent me to the ER where my ARM ballooned to two to three times its normal size. My fistula and arm is now malformed in that area...
- Last year I had a heart attack after dialysis and they couldn't figure out how or why. I was 30 at the time and had a TOTAL cholesterol of 99. I now have stents in my heart and I am on plavix.
- Plavix use is permanent now and most transplant surgeons will not touch you while you're on it.

There is SO much more... But that will tell you why my screen name, email and how I found this site all fits within "I hate dialysis" :D

EDIT: fixed my age. I was thinking about the HA at the time haha
« Last Edit: November 25, 2012, 05:14:14 AM by dialysis.sucks » Logged
cattlekid
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« Reply #1 on: November 25, 2012, 04:37:50 AM »

Hello and welcome!

I'm a survivor of the heart attack club also, however, I got away with no stents, just a balloon angioplasty.  Mine did not happen during or after dialysis (I dialyze at home) but just smack dab in the middle of a random Friday afternoon.  Of course, that random Friday happened to be the weekend of my annual family reunion.   >:(

As far as the Plavix goes, have you talked to your cardiologist about suspending it while you get a transplant?  Mine said that he is fine with me not taking my Plavix when I get a transplant and for a few weeks afterwards, but I would have to go back on it at some point.  The transplant center put me on hold for six weeks after my heart attack as they wanted six weeks of Plaxvix under my belt before they would reactivate me.  That was fine with me because I was still pretty tired at that point and wouldn't have wanted to undergo major surgery at that time.  But I got reactivated on September 17th and those six weeks were still credited to my waiting time.  Something to think about discussing with your cardiologist if you haven't already......

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dialysis.sucks
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« Reply #2 on: November 25, 2012, 05:18:10 AM »

Hello and welcome!

I'm a survivor of the heart attack club also, however, I got away with no stents, just a balloon angioplasty.  Mine did not happen during or after dialysis (I dialyze at home) but just smack dab in the middle of a random Friday afternoon.  Of course, that random Friday happened to be the weekend of my annual family reunion.   >:(

As far as the Plavix goes, have you talked to your cardiologist about suspending it while you get a transplant?  Mine said that he is fine with me not taking my Plavix when I get a transplant and for a few weeks afterwards, but I would have to go back on it at some point.  The transplant center put me on hold for six weeks after my heart attack as they wanted six weeks of Plaxvix under my belt before they would reactivate me.  That was fine with me because I was still pretty tired at that point and wouldn't have wanted to undergo major surgery at that time.  But I got reactivated on September 17th and those six weeks were still credited to my waiting time.  Something to think about discussing with your cardiologist if you haven't already......

Thanks for the welcome :)

Unfortunately, Ive had long conversations with my cardiologist on just that subject. He said because I now have the two stents and possibly a third in the future that he may be able to switch me to something else for a very limited time, but that he felt I was basically on it for the long term :( and mine happened just before my birthday. Went into one hospital, they said I was fine, kicked me out that night, three hours later was in a different hospital ER and rushed into surgery. The doctor that found that anomaly is now my primary care for obvious reasons haha
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boswife
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us and fam easter 2013

« Reply #3 on: November 25, 2012, 08:17:41 AM »

ewe...  you've had a time of it havent you   :banghead;  Im so glad you found your way here and please spill all the awfulness as theres so many others  here theres got to be someone that will relate to many of the awful things you've already had to go through.  Seems that it all should be setteling down a bit now???  Well  :welcomesign; and i do hope you'll stick around and get some great information from some super folkes here.  Hopeing for some better Dialysis/life times for you too  :flower;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Rerun
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Going through life tied to a chair!

« Reply #4 on: November 25, 2012, 11:21:18 AM »

Hi Dialysis,Sucks, and yes it does.  I'm in line with you.  Sounds like you have bit the dust a few times.  Me too!  Hope you like this site.  We have lots of tips and advice here so join in on the conversation.

Rerun, Moderator    :welcomesign; 
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MaryJoe
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« Reply #5 on: November 25, 2012, 01:44:40 PM »

Hi James, welcome to IHD.  It sounds like you've been on quite a ride with all your complications.  I hope that part of your journey is now over.  I've never had a heart attack or been on Plavix...or had stents...or been in a coma, but I hope a way for you to get on the transplant list opens up in the future.  There are members who have been through some (or all!) off these problems also, and their experiences and advice are invaluable to those of us who may be facing these issues in the future.  Yours will be too!

 :waving; 
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Whether the glass is half empty or half full is not as important as being thankful there's a glass and grateful there's something in it.
cassandra
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When all else fails run in circles, shout loudly

« Reply #6 on: November 25, 2012, 02:36:01 PM »


Welcome to the site James  :welcomesign;

take care Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
lmunchkin
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"There Is No Place Like Home!"

« Reply #7 on: November 26, 2012, 05:51:53 PM »

Welcome James.  Man you really have had a rough go of it.  You are so young and this crap is no respector of anyone, is it? Its like crazy!   I am not on Dialysis, but my husband is!  It is so very hard to watch you all go through this.  He was diagnosed in 2004. He has pretty much accepted it for what it is. What can you do?  Just the best you can do is all.

Hope things even out for you, James. Please continue to come here and vent,ask questions and share if you like, they all understand on here!

Again welcome & God Bless,
lmunchkin :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
treesx4
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« Reply #8 on: December 02, 2012, 09:21:54 PM »

Hello!  :bandance;New also! I am not a fan of Davita either. On vacation they almost killed me. I do not ever get fluid taken off and they took 2 off due to their "policies". Hope to see more posts from ya!
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April 2011..2 biopsy's
April 2011..In hospital one week, had PD cath. put in.
June 2001..Started PD @ home
July 2011...PD cath. wrapped around my Bowels and was resting on my liver, had to have it repositioned.
August 2011..Had PD cath removed, Diaphragm had a hole and fluid was on my lungs.
August 2011..Had Ash Splint put in my chest..started Dialysis with DCI.
November 2011...In hospital for on week due to P.E...new dialysis machine and I didn't get my Heparin and it caused clots in my lungs.
December 2011..Had chest cath. replaced due to leak.
Feb. 2012...had access put in my arm...
May 2012...had chest cath. ripped out...no pain meds at all.

"Then your salvation will come like the dawn, and your wounds will quickly heal. Your godliness will lead you forward, and the glory of the LORD will protect you from behind." Isaiah 58:8
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