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« on: March 05, 2016, 08:24:14 AM »

Hi everyone!
I am so happy to find this forum! Where to begin... I have been on in center dialysis for about 1 1/2 years.  I had inoperable cervical cancer back in 1990 that was treated only with radiation. Survived the cancer, but developed scar tissue over the 25+ years  around my ureters, bowel, bladder, & nerves in lower spine from the radiation damage. I had renal stones that got stuck in my damaged ureters that caused my renal failure.  I've been evaluated x 2 for transplant. They (transplant team) has asked for some more testing/treatment prior to transplant. That's where I am now. I will probably need 2 surgeries this year before being placed on list, an ileal conduit ( my bladder doesn't work) and a removal of an ovarian mass they found during work up, so I know my transplant is still pretty far away.  I'm sick & tired of being sick & tired.

I had to medically retire when I started dialysis. Battling some depression & pain.  I never envisioned my retirement to be like this.  I am interested in talking to others who have chronic pain and are on HD. Any tips/helpful hints you can share would be much appreciated.   It's driving me crazy!! ( I really didn't have far to go  :bandance;)

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When all else fails run in circles, shout loudly

« Reply #1 on: March 05, 2016, 09:00:43 AM »

Welcome to the site JudiM


I sure hope that you'll find the answers that you're looking for on the site.

Take care, Cas
« Last Edit: March 07, 2016, 05:59:19 AM by cassandra » Logged

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
Charlie B53
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« Reply #2 on: March 05, 2016, 12:27:55 PM »

Hi JudiM,  Welcome to IHD!

Hopefully you will find many answers to your questions here.  You may not find many with your same aflilctions, but perhaps close enough to be of benefit.

I have chronic pain for many years. Anti-inflammatory's in daily large doses for extended years has greatly contributed to the loss of my kidneys.  I refuse to take narcotic based pain meds,  they do not really work that well and the side effects are terrible.  My Dr's started me on Tramadol.  It makes a difference, just not enough.  So I wear a fentenyal patch.  The combination makes a marked reduction in my pain, and does NOT cause me any of the grogginess usually associated with drug use.  I still have to be aware of my diet to avoid narcotic induced constipation, but eating right does not pose any problem.

Post often, rant or rave when you feel the need.  We are all in this together.

Take Care,

Charlie B53
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« Reply #3 on: March 06, 2016, 06:31:21 AM »

Welcome JudiM!

Diagnosed FJHN/UKD 2009
Transplant April 2014
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« Reply #4 on: March 06, 2016, 08:28:27 AM »

Welcome JudiM.  Try bromelain which is derived from pineapple. http://www.webmd.com/vitamins-supplements/ingredientmono-895-bromelain.aspx?activeingredientid=895&activeingredientname=bromelain.   I would also look at eliminating pro inflammatory foods in your diet such dairy, processed foods, ...etc
Add more foods hi in antioxidants such as berries, fresh fruits and veggies that your renal dietitian can recommend to you as she knows your personal condition.     I am not an expert, but have been there done that.     

Good luck!
Vt Big Rig
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« Reply #5 on: March 07, 2016, 04:19:13 AM »

Welcome to the site, JudiM.

I hope you find some answers to what you are looking for. Good folks here.

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
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