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I REALLY hate dialysis!!!
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Topic: I REALLY hate dialysis!!! (Read 4450 times)
babydonut2013
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One day we will look back at this and laugh...
I REALLY hate dialysis!!!
«
on:
August 28, 2013, 02:37:58 AM »
I started dialysis three days after my 25th birthday and have been doing it for a little over two years. My name is Amanda and my story is quite simple. I was diagnosed with Type 1 Diabetes and rather than do the simple things to keep myself healthy I did the opposite. I didn't take my insulin or check my blood sugar, I ate all the wrong things, I drank and used drugs...I did everything but take care of myself. Finally in 2009 I moved from my home state of Texas to be with my mom and grandmother in Florida and several months later I lost vision in my right eye. It was almost like when i finally started taking care of myself it was already to late. But I kept doing my best and I was living my life the best I could. Working, spending time with my amazing mom, and trying to get past my usual bouts of nausea and feeling not all that great 5 days out of the week. When I noticed that my legs looked like little balloons and I felt worse than usual I went to the E.R. and was told my kidneys had 7% function and that within the year I needed to get on the transplant list or start dialysis. I started dialysis 2 months after that emergency room visit. I was scheduled to have a transplant evaluation on October 19, 2011 but the day before I was the passenger in a vehicle and we were hit head on by a big rig, so I had to push back a lot of the things required for the evaluation but by the grace of God was approved for a kidney/pancreatic transplant in June, and was actually called in as a backup the very first day I was listed, and again on July 4th but there was some miscommunication and I was not able to accept the call on July 4th and had to be reviewed again and make everyone involved aware of several things that had been the problems with the first two calls for possible transplantation. I do my best to live outside of dialysis. I go out, I spend time with my family because they are super supportive. I have an amazing boyfriend who worries too much and a pug named Lily who I treat like a little human. I don't consider myself "sick", rather I would say i'm "getting better". Diabetes and dialysis take their toll on me, but I am blessed to still be able to walk, talk, and think and I won't ever lose hope. I get tired but so do healthy people. If there was one message I could spread to everyone in the world who think the way I used to, I would tell them to do what you need to do to stay healthy no matter how much you hate it. You don't want to pay the price years later because no matter what you think, eventually it will catch up to you.
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Joe
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Re: I REALLY hate dialysis!!!
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Reply #1 on:
August 28, 2013, 05:21:33 AM »
Wise words, and
to IHD. Hope you enjoy it here, there are a bunch of good folks.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
cassandra
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When all else fails run in circles, shout loudly
Re: I REALLY hate dialysis!!!
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Reply #2 on:
August 28, 2013, 11:46:45 AM »
Welcome to the site BD2013
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
Poppylicious
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Re: I REALLY hate dialysis!!!
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Reply #3 on:
August 28, 2013, 12:02:32 PM »
Amanda!
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- wife of kidney recepient (10/2011) -
venting myself online since 2003
(personal blog)
grumbles of a dialysis wife-y
(kidney blog)
sometimes i take pictures
(me, on flickr)
Everything was beautiful, and nothing hurt.
Angiepkd
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Re: I REALLY hate dialysis!!!
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Reply #4 on:
August 28, 2013, 01:56:25 PM »
babydonut! You have come to the right place for support and knowledge! The people on IHD have helped me so much. It's nice to have a place where everyone understands what you're going through. Don't beat yourself up for things in the past. You are so young. It would be hard for anyone to deal with diabetes at an early age. Sounds like you have it together now, and that is what matters most. Keep that good attitude and remember that a transplant could be right around the corner! Sending you prayers and hugs!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol! So far we are doing great!
RichardMEL
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Re: I REALLY hate dialysis!!!
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Reply #5 on:
August 29, 2013, 12:13:03 AM »
Welcome to IHD babydonut2013 - love the nickname - very cute - or Amanda,
Your story is a difficult one but also very honest. As someone who has also lost vision mostly in one eye, but not from diabetes, I can relate at least to just how that kind of thing affects you, and of course dialysis.
I think it's very positive that since being listed you've had several opportunities at transplant, which really bodes well for the future when the comms are worked out.
So glad you not only have a fantastic support network around you - your family, bf and even doggy friend - and now you've found our community for more support and a place to vent. That's great!
Again, welcome!
RichardMEL, Moderator
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!!
BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Grumpy-1
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Make me the person my dog thinks I am
Re: I REALLY hate dialysis!!!
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Reply #6 on:
August 29, 2013, 09:35:29 AM »
Sorry you had to pay the price for neglecting your health, but glad you are here. Good place to vent, learn and share. Grumpy
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Make me the person my dog thinks I am
Icare
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Re: I REALLY hate dialysis!!!
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Reply #7 on:
August 30, 2013, 01:42:06 AM »
Welcome! I have a pug named Bosco.
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Marebear
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Re: I REALLY hate dialysis!!!
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Reply #8 on:
December 12, 2013, 04:47:40 PM »
Baby doughnut my story is very similar to yours. I let my diabetes go out of control causing my kidneys to fail as well and I really really hate dialysis too. I've only begun about 6 months ago and it's been a hard struggle. I look to this site for support because sometimes only ppl that are going through this can really understand what your going through.
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