Newbie from Massachusetts

ihstein

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Newbie from Massachusetts

« on: July 14, 2013, 09:54:01 AM »

Hi Everyone-
I am new to this message board and am grateful it exists. To share my story and why I am here: I am 53 years old and first found out I had kidney disease when I was 19 yrs old and a sophomore in college. I had 46 percent of my kidney function at that time and was diagnosed with membranous glomerul nephritis.

I hung on for another 9 years and started peritoneal dialysis in 1988. I was very fortunate and received a deceased donor kidney in 1989 which lasted almost 24 years. I started peritoneal dialysis again on January 1st this year. Things have not been going well... I have had numerous complications that have mad life hell and I have had many moments where I don't know if I can keep doing what I am doing. I was unable to use the cycler until recently due to pain. I have a fast membrane with makes things difficult and I have pain when I am empty. I feel awful most of the time. Hemodialysis has not been a straight forward options because my veins are SMALL. I keep hanging on in the hopes I will get a call for a kidney soon.

I have been on the national transplant list for 4.5 years now. In Massachusetts (the Northeast region) you don't start moving up on the transplant list until you start dialysis so I am also listed in Pittsburgh< PA and in Baltimore, MD. I am getting to the top of the list at John Hopkins in Baltimore. I have begun to get calls for potential kidneys but so far none were good enough. When I do get a call I will have to fly to Baltimore to get the transplant and then stay there for awhile afterwards.

I have not worked for over 3 years (I am an engineer/project manager). I like to spend time in my garden and work with clay when I feel well enough.

Looking forward to getting to know you all.


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India Rose

cassandra

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When all else fails run in circles, shout loudly

Re: Newbie from Massachusetts

« Reply #1 on: July 14, 2013, 10:00:57 AM »

Welcome to the site ihstein

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

boswife

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us and fam easter 2013

Re: Newbie from Massachusetts

« Reply #2 on: July 14, 2013, 10:06:14 AM »

welcome and glad your here

You sure are one that seems to be a great canidate for another kidney!! I do so hope that this comes soon so you can get on with life. It's hard when other options are limited

Well, once again, im glad you found your way here and wish you well. keep active on the board, it really helps with sanity


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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

Poppylicious

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Re: Newbie from Massachusetts

« Reply #3 on: July 14, 2013, 03:51:48 PM »


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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.

paris

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Re: Newbie from Massachusetts

« Reply #4 on: July 14, 2013, 04:32:05 PM »

Welcome. You will find a lot of great people and wonderful information here. Looking forward to hearing more from you.


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It's not what you gather, but what you scatter that tells what kind of life you have lived.

lmunchkin

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"There Is No Place Like Home!"

Re: Newbie from Massachusetts

« Reply #5 on: August 08, 2013, 08:41:17 PM »

Wow & welcome to IHD. Youve been dealing with a lot over the years.

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

obsidianom

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Re: Newbie from Massachusetts

« Reply #6 on: August 12, 2013, 08:33:18 AM »

My wife has tiny veins too but at Lahey clinic in Burlington Mass. we had the top vascular doc create a fistula after the locals in maine didnt think they could. If you are interested in the docs name, send me a messsage and I will give you his name.


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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.

Rerun

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Going through life tied to a chair!

Re: Newbie from Massachusetts

« Reply #7 on: August 12, 2013, 04:19:57 PM »

ihstein, welcome to IHD. I'm so glad you found us. Your timeline is similar to mine. I am 52 and started dialysis in 1987 and got my kidney in 1988 but lasted 17 years. 24 for you is wonderful.. I now do incenter nocturnal hemo. 3 x a week for 8 hours each time. It sucks.

I hope you call comes soon. Keep us posted.

Rerun, Moderator


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