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liverpool101
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« on: August 18, 2016, 08:10:36 AM »

 My name is Bill. I'm 64 years old. How I got here: in December 2011 I had a perianal cyst so I went to my PCP. He couldn't cut it all out so he sent me to the ER. They got it all out but in testing they found my blood sugar to be over 500 so they admitted me. Turns out the cyst was caused by a streph infection in my blood. (My creatnine was 1.0). The first antibiotic they gave didn't work so they gave me Vancomyacin. It gave me hallucinations the first night but they gave me two more doses which gave me Stevens-Johnson (I burnt from the inside out. Had blisters everywhere. Burnt a hole in the bottom of my foot down to the bone). Spent almost all of December in the hospital (including Christmas). Between the infection and the Vanc my creatnine went to 5.0 and they put me on dialysis with a chest cath. Taken off in March 2012. Then they did a biopsy which the surgeon botched. (At that time my creatnine was 2.8 and never came down after that). In 2014 I went ESRD and hemo. I tried PD for a year and a half but that never worked all that well so back on hemo Jan 2016. Very disgusted with my clinic; staff does't listen to me even after several complaints to the Clinic Manager. Really temped to quit. In fact, I even wrote a song I call The Dialysis Blues. Like the last line says: "They say it's saving my life, but there's no quality for me".
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Rerun
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Going through life tied to a chair!

« Reply #1 on: August 18, 2016, 09:17:05 AM »

Holy Crap!  You have been through the ringer.  I've had one of those cysts that you started out with and THAT is bad enough.  Then all the other crap it is a wonder you made it at all.  Then to end up with the gift of dialysis.  WOW

Where do you live?  England? 

Anyway you landed here with us and for that I am thankful.  Post your questions, and read other questions.  You are home.

Welcome - Rerun, Admin.

 :welcomesign;
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cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: August 18, 2016, 11:38:51 AM »

Welcome to the site liverpool101

  :welcomesign;


Like Rerun asked, are you from Liverpool England?

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
       still on waitinglist, still ok I think
Vt Big Rig
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« Reply #3 on: August 19, 2016, 05:33:12 AM »

Welcome to the site ....... sounds like a tough road. I hope you can change clinics or otherwise find things that work for you.

Good Luck
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
DayaraLee
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« Reply #4 on: August 21, 2016, 07:06:03 AM »

Liverpool, you sure have had your share of troubles, plus some! Praying that things begin to go your way. This is a great place you've found - a lot of knowledge and experience, and many people to support you and listen.   
 :welcomesign;
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My husband is the one with CKD, but I'm who needs the coping strategies!
CKD Stage 3A, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
liverpool101
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« Reply #5 on: August 23, 2016, 08:23:49 AM »

My name is Bill.  I'm from Atlanta, Georgia. I show Dalmatians and my kennel name is Liverpool Dalmatians and all of my dog's names are Beatles songs: I currently have 2 Dal's, Abbey Road and Sexy Sadie. Past dogs were Lucy in the Sky, Penny Lane and SGT Pepper. On top of all the kidney issues in 2008 I came down with a rare form of Guillain-Barré syndrome (GBS)  called CIDP or Chronic Inflammatory Demyelinating Polyneuropathy. I was numb from the waist down, suffered the most excruciating pain in the back I've ever had and couldn't walk. I went to 8 different doctors with different specialties. Every one of them said I was fine. The only one who believed me was my chiropractor who is a psychic. Anyway 8 months later
she got me to the 'right' neurologist who knew what it was and I got treatment including physical therapy to learn how to walk again.
Unfortunately I can't change dialysis clinics because my nephrologist runs this clinic (and it's only 8 miles away).
 
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LorinnPKD
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« Reply #6 on: August 23, 2016, 04:06:08 PM »

The wonderful names of your dogs brightened my day so much.  Very clever!

Nice to have you on the boards!
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myporkchop
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« Reply #7 on: August 29, 2016, 02:20:44 PM »

Hi Liverpool sorry to hear about all the difficulties u have been facing. Take care xx
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21st April 2016 - mum got told she had only a few months to live. Doctor's did not support dialysis treatment for her due to many other health complications. They didn't think she could cope and recommended conservative care. Our family was devastated. She is only 64 years old.

19th June 2016 - joined IHD. The support from all of you gave my mum the confidence to give dialysis a go.
26th September 2016 - started PD dialysis at home (CAPD). The first week has wrecked havoc with her blood sugar levels and diabetes, she has been in hospital twice within the week. Dialysis is going well though.
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