Hi from L I

Aqualung

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Hi from L I

« on: April 09, 2013, 03:37:59 AM »

Hi all, My name is Joey D.. I live on Long Island in Suffolk County NY..I will be starting dialysis very soon,my creatnine is creeping up,now at 6.3 or so as of last week..I've had 2 Fistulas done,the first didn't work out,scar tissue formed so they did it again,moving it a little further up my wrist..next I had a vein closed off 3 weeks ago to make it mature faster..I'll find out tomorrow if it's ready or not..I feel like crap right now and am hoping this will make me feel a little better..I have a few choices were to go for dialysis,I choose the Hauppague unit right off 111..Anybody use this unit and if so how do you like it there??I've been retired for 10 years now and it's been a downhill battle ever since.. Joey D


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MaryD

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Re: Hi from L I

« Reply #1 on: April 09, 2013, 05:05:03 AM »

Hi, Joey, and welcome!

I think everyone feels pretty crappy and apprehensive when they're about to start haemo. I hope your fistula is a good one and that you feel much better when you start dialysis. Let it be uphill all the way from here on.


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Angiepkd

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Re: Hi from L I

« Reply #2 on: April 09, 2013, 05:08:10 AM »

Hi Joey! Your fistula saga sounds a lot like mine. The first one in my wrist didn't mature, so they made a new one in my upper arm. Several trips to the access center later, it now works too well and I am waiting to have a flow reduction surgery. I have been doing dialysis for a little over a month. I use NxStage home hemo and so far I love it. I feel so much better than I did! Sorry I don't have any info on your center, but if they offer home training and you qualify, I would definitely consider it. Whatever modality you choose, best of luck to you! Don't be worried about starting D. It really isn't too bad, and the unknown is so much worse than when you actually do it! You will find lots of help on this site. The members are awesome and have helped me so much!


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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!

Rerun

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Going through life tied to a chair!

Re: Hi from L I

« Reply #3 on: April 09, 2013, 07:16:19 AM »

Hi Joey and welcome to IHD. I'm so glad you found us. Who is the provider for your center DaVita or Fresinius (sp). Usually, those are the 2 big ones unless yours is non-profit or hospital affiliated.

Sounds like you are on your way. We will be here for you. You will do fine and feel better but it is hard to think of being on a machine 3 x a week for EVER unless you get a transplant. Stick with us... no pun intended....

Rerun, Moderator


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Aqualung

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Re: Hi from L I

« Reply #4 on: April 09, 2013, 11:52:35 AM »

Thanxx for the warm welcome!!I think Fresinius is the provider I'll be going to..Does anyone recommend one place over any other??My dr says it is a great place to go for treatment..
i guess i'll find out tomorrow when i'll be starting,can't feel any worse than I do now!!I've never felt so run down in all my life!! Joey D


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Poppylicious

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Re: Hi from L I

« Reply #5 on: April 10, 2013, 07:02:27 AM »

Joey!


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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.

Aqualung

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Re: Hi from L I

« Reply #6 on: April 14, 2013, 02:30:32 AM »

I'll be starting Dialysis on Monday.. 2 hours at first then work my way up ..


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SooMK

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Re: Hi from L I

« Reply #7 on: April 14, 2013, 07:43:28 AM »

Hi Joey! Welcome to IHD. I'm still pre-D but live in Suffolk County, LI too and watching the old creatinine climb. I've been checking in on IHD for a few years now and it's amazing how much info and support are here. Posts like Angiepkd's help me to think when my time comes I'll be able to do this too. I'll be thinking of you and watching for your posts. Wishing you an easy time of it.


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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.

lmunchkin

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"There Is No Place Like Home!"

Re: Hi from L I

« Reply #8 on: April 15, 2013, 04:40:28 PM »

Welcome Joey. You have found the right place. Sounds like you are on your way. How did it go today? Try to learn as much as you can, so maybe you can train for Hemo at home. My husband is 65 also, and we do the dialysis at home. Just get better and learn everything about dialysis. Don't be afraid to ask questions of us. We are here for you.

Again welcome & God Bless,
lmunchkin


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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

boswife

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us and fam easter 2013

Re: Hi from L I

« Reply #9 on: April 15, 2013, 08:57:16 PM »

and hope your day went good today and you've gained some comfort knowing it'll all be ok. Hope to hear from you soon, and blessings


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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

Aqualung

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Re: Hi from L I

« Reply #10 on: April 16, 2013, 04:57:04 AM »

I had my first session yesterday..To tell ya the truth it was not that bad!!I had a 2 hour session to start with..The hardest part was sitting there for 2 hours and not moving my arm..To all that will be starting it feels like getting two blood tests at one time in the same arm..Don't be scared of it!! My next session is Weds for two and a half hours.. joey D


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Aqualung

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Re: Hi from L I

« Reply #11 on: April 16, 2013, 05:34:10 AM »

Forgot to mention that after a 2 hour session I feel better already.. Maybe it's mind over matter!!LOL


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Aqualung

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Re: Hi from L I

« Reply #12 on: April 20, 2013, 10:34:38 AM »

Just my luck.. I go for my 3rd session this morning and the vein collapses in my arm..Now I might need a catheter in my neck..I just can't win!!LOL


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