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Author Topic: Hello everybody  (Read 2942 times)
502Blues
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« on: November 10, 2008, 08:03:16 AM »

I'm Derek, just turned 37 November 3rd. I live in Louisville Kentucky. Louisville Cardinal Fan, GO Cards!. I am a dialysis patient for 10 years now, but had a previous transplant from Feb 92 until 1998. I was only 19 when my kidneys failed. They never really figured out why they failed but I once read in my medical chart that I have Alports Syndrome. Makes a lil sense but  I have no idea who wrote that diagnosis or how they could possibly came to that conclusion,especially since there was no biopsy done. I do hemodialysis 3 times a week at a clinic, I have an A/V Graft in my abdomen now because I dont have any options left. Those temporary catheters they put in you destroy your veins. I am usually on the transplant waiting list but currently i have been deactivated because of a bad CT scan, Im close to getting back on it. I enjoy watching sports and reality shows on TV. I like shooting pool, going for walks and riding my bike, chatting with people on the internet,and hanging out with my women friends. Im single with no kids. I am currently a Medical Coding student
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1991: kidney failure, undetermined cause
1991: right and left clavicle temporary catheters
1991: catheter for PD
1992:transplant
1998: June, Fistula placement
1998: july, back to dialysis,Hemo
1999: transplanted kidney removed
2001: parathyroidism
2006:march, fstula cant be fixed due to too many stents in damaged vessels caused by temp caths
2006: april, Pd catheter placement
 PD would not drain properly
2006: finally after much pain and misery, AV Graft placed in abdomen, its working fine thank god
Quit dialysis sometime in 2009, had a change of heart and  returned before I died
transferred waiting list time to another city/state and was transplanted almost right away August 9,2013
Zach
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"Still crazy after all these years."

« Reply #1 on: November 10, 2008, 08:18:38 AM »

Welcome to our community!
 :beer1;
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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."
monrein
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Might as well smile

« Reply #2 on: November 10, 2008, 08:46:22 AM »

 :welcomesign;  Derek.  Good to have you here with us.  I'd like to hear more about your experience with temporary catheters.  Do you mean the chest caths?  I'm also so sorry that you've had to enter the world of ESRD and especially at only 19.  Post often and I look forward to learning more of your story.
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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
willieandwinnie
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« Reply #3 on: November 10, 2008, 08:57:16 AM »

:welcomesign; Derek. Glad you joined us. We are a great group and look forward to hearing more from you. We have loads of information here and lots of support. I'm with monrein and would like to hear more about the catheter issues. Again, Welcome.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
paul.karen
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« Reply #4 on: November 10, 2008, 09:03:59 AM »

 :waving;

Welcome Derek.
You found yourself a great place.
Many helpful great people with most any answer you may seek.
P&K
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
502Blues
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« Reply #5 on: November 10, 2008, 09:30:16 AM »

I posted a reply about my catheter experience, where did it go
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1991: kidney failure, undetermined cause
1991: right and left clavicle temporary catheters
1991: catheter for PD
1992:transplant
1998: June, Fistula placement
1998: july, back to dialysis,Hemo
1999: transplanted kidney removed
2001: parathyroidism
2006:march, fstula cant be fixed due to too many stents in damaged vessels caused by temp caths
2006: april, Pd catheter placement
 PD would not drain properly
2006: finally after much pain and misery, AV Graft placed in abdomen, its working fine thank god
Quit dialysis sometime in 2009, had a change of heart and  returned before I died
transferred waiting list time to another city/state and was transplanted almost right away August 9,2013
Rerun
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Going through life tied to a chair!

« Reply #6 on: November 10, 2008, 09:40:23 AM »

Derek.  You have been robbed of your young adult life like so many of us on here.  You have a bright spirit and I look forward to hearing from you.

                                                :welcomesign;
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502Blues
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« Reply #7 on: November 10, 2008, 10:07:25 AM »

Well when I first got sick in 1991 I had about 5% kidney function left. That had to start dialysis right away so they put in a temporary catheter in my right subclavical vein, that one had a problem so they put one in my left side. I then had a peritoneal Cathater put in and did that for 6 months. My dad gave me one of his kidneys in Feb 92. That lasted 6 yrs I went back on dialysis in 98,had a fistula put in my left lower arm. It wasn't that long after that  when i started having swelling and they realized that I had a blockage where that temporary catheter had been. Over the years I would have many angioplasties and stents put in. STENTS are trouble also. Everytime they would put in a stent,the area around the stent would close off. Stents do NOT work.So finally after several stents,there was no more room for any more stents and there was nothing left they could go for it. So i needed a new access,i decided to do peritoneal but it would not drain like it was supposed to. In the meantime they had to keep using my fistula while they figure out why my PD wasn't working. My arm was  swollen 3 times as big as normal  by the time i could stop using it. So i wasn't getting enough dialysis and my arm was about to explode it felt like. They wanted to put a fistula in my right arm but I had the same blockage in the subclavicle area already thanks to that Temp Cathater I had.   I needed dialysis right away while they figure out where to put one. I had another temp Cathater put in my left leg,groin area. I was in the hospital  and sick of being there and wanted to go home and they wouldn't go home with that, so i had them put a tunnel catheter in my right leg.  So they  finally decided to put an AV graft in my left leg and i went into surgery thinking thats where it would be,i woke up and it was in my abdomen because once again thanks to that temp cath i had in my groin, there was blockage which prevented me from getting it in my leg.. I had already figured by now that these temporary catheters are trouble but my suspicions were confirmed  when i talked to my friend Holly,who is education coordinator,unit supervisor, and RN. She just told me what i already knew, the catheters does much damage to the vessels.I'm not sure if that includes the Chest Caths, thank god Ive never had one of those. from what Ive seen,they cause problems too.  So now, the only possible option i have is my right leg, and thats if the tunnel cathater hasn't done the same kinda damage. A transplant may be months away if that.
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1991: kidney failure, undetermined cause
1991: right and left clavicle temporary catheters
1991: catheter for PD
1992:transplant
1998: June, Fistula placement
1998: july, back to dialysis,Hemo
1999: transplanted kidney removed
2001: parathyroidism
2006:march, fstula cant be fixed due to too many stents in damaged vessels caused by temp caths
2006: april, Pd catheter placement
 PD would not drain properly
2006: finally after much pain and misery, AV Graft placed in abdomen, its working fine thank god
Quit dialysis sometime in 2009, had a change of heart and  returned before I died
transferred waiting list time to another city/state and was transplanted almost right away August 9,2013
Joe Paul
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« Reply #8 on: November 10, 2008, 10:40:03 AM »

Welcome Derek, good to have you aboard.
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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
paris
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« Reply #9 on: November 10, 2008, 11:46:57 AM »

Dereck,  Wow, you have certainly experienced too much for your 37 years.  (my son turned 38 on Nov.4th; you 37 on Nov. 3rd and he was born in Lexington, Kentucky)  Your story really touched me.  As a mother, I wish I could take all of this away for you.  All I can do is offer my support and welcome you to this great site.  The members are so caring and willing to help each other.  I think you have a lot to teach us and I look forward to reading more of your posts.   In the meantime, I will be praying for that transplant!!   :grouphug;





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It's not what you gather, but what you scatter that tells what kind of life you have lived.
jessup
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Gemma - the tucker monster

« Reply #10 on: November 10, 2008, 11:53:02 AM »

 :waving; G'day and  :welcomesign;
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angela515
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i am awesome.

« Reply #11 on: December 22, 2008, 05:03:52 PM »

Hiyah n welcome!

 :waving;
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #12 on: December 23, 2008, 01:55:34 AM »

Welcome to our community, Derek!!  So sorry that you have had to go through all this at this age.  But the human spirit is stronger than affliction and I am glad that you are taking it all in your stride.  This is a great place to be - lots of info, loads of support and barrells of fun.  In fact, it is a genuine family  :grouphug;  So keep reading and keep posting.



Bajanne, Moderator
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I LOVE  my IHD family! :grouphug;
Romona
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« Reply #13 on: December 23, 2008, 02:58:01 PM »

 :welcomesign;
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