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Author Topic: Hi to all from Auburn, NY  (Read 2631 times)
sarabeth101
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« on: May 15, 2008, 05:24:08 PM »

I have spent about a week traveling through this website and getting to know some of the members.  I feel terribly lucky to have found you all.  Here is the low down on me. 
I am 35 yo female.  I am married to the only man that I have ever loved and about 1 1/2 year ago we adopted the best kid in the whole world.  I am now the mother of a bouncing baby girl (who's acutally 12 years old). 
March of 2006 I was prescirbed a medication (tetricyclene- spelling may not be correct) which sent me into kidney failure immediately.  I had been expecting kidney failure at some point, because genetically it was in the cards for me, but given my family history it should have come when I was in my 50's not my 30's.  So for nearly 2 1/2 years I have been taking medication and being super careful about what I eat, but still watching my numbers climb.  At last doctor's appointment my level was 11.3, which needless to say is very high.
As though that was not enough in our life.................... Februaury 2007 my dream house burned to the ground.  My husband and I spent 2 years and $80,000 remodeling a 200 yo farm house.  That was pretty tough to take.  September 2007 I took a leap of faith and changed careers.  I am now a parole officer, working full-time.  I have no option but to continue working, because I am still on probation. 
At this point in this saga I am trying to find the least intrusive option regarding dialysis.  I presently have a fistula in my arm, which was put in at the beginning of this drama.  I thought hd was the bet choice for me (though sitting in the hospital thinking that I'm going to die is not the ideal time to make that choice) .  I have an appointment to have an access put into my abdomen for pd, but before that happens, I would like some feed back from you all. 
Here are my concerns about
hd................. I will have to go to a clinic, which could jeopardize my career.  I have heard that there is the option of doing hd at home, but I can't really find much about it and I don't know how to get more information about availability in my area.
pd................  12 hours hooked to a machine or do exchanges every couple of hours.  Neither of these seem like viable options.  (What do I do, tell the convicted felons to hang on for a few minutes, I've got take a break? )N] I don't spend 6 hours in bed per night, I certain am not going to stay there for 12 hours.  There are soccer games, and foot ball games and cheerleading practice that all take place when I would need to be hooked to a machine.  I'm also wondering if you are able to go swimming.
I am really looking forward to you real life feed back.  I feel like I have a very knowledgable doctor, but at the end of the day, he had never been a dialysis patient and doesn't know what that means or how that feels. 
Thanks to you all in advance. 
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monrein
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Might as well smile

« Reply #1 on: May 15, 2008, 05:49:18 PM »

 :welcomesign; to IHD Sarabeth.  I look forward to getting to know more about you and hopefully you will find some answers about what might be best for you in the way of dialysis options.  I start hemo on Tuesday for the first time in over 23 years as my terrific transplant has now failed. I did home hemo for almost 5 years before that.  There are lots of PD patients here so lots of info. to process.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Romona
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« Reply #2 on: May 15, 2008, 05:55:12 PM »

 :welcomesign;
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xtrememoosetrax
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« Reply #3 on: May 15, 2008, 06:57:07 PM »

 :welcomesign; Sarabeth.  I'm glad you found your way to IHD. Lots of great people here, with tons of information and support. Keep reading and keep posting -- we'll be looking forward to hearing more from you.
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Living donor to friend via 3-way paired exchange on July 30, 2008.

www.paireddonation.org
www.caringbridge.org/visit/marthahansen
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« Reply #4 on: May 15, 2008, 07:09:01 PM »

Welcome, Sarabeth. Being retired from law enforcement, I can understand your dilema. You might want to consider nocturnal hemo, either in center or at home. You days and evenings would be totally free and you would feel much better.
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That which does not kill me only makes me stronger - Neitzsche
annabanana
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« Reply #5 on: May 15, 2008, 07:10:03 PM »

 :welcomesign;
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
Bajanne
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« Reply #6 on: May 15, 2008, 08:38:00 PM »

Welcome to our community!  I am glad that you found us, and I know that this site will become one of your weapons with which you deal with your renal challenge.  I can't help you in your decision since in my area (a Caribbean territory) the only dialysis we have is in-centre haemodialysis.  But there are lots of others here who can help you review your options.  Please feel free to vent, rant, rage, or rave.  that is what this site is for.  You are with family here.  I look forward to hearing much more from you.


Bajanne, Moderator
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Sluff
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« Reply #7 on: May 16, 2008, 04:58:17 AM »

Welcome to ihatedialysis.com SaraBeth,

I am predialysis so I can not relate to some of the things you discuss here, however I do have knowledge from being a member here for awhile. I have heard positive comments about PD being one of the better ways to dialyzes but then others like nocturnal. Then there is Nxstage which others feel like it was the best choice. The curator of  ihatedialysis.com also created a site www.ilovenxstage.com  maybe check that out and there are many members here on nxstage.  many ways to choose but take your time and research what is best for you.


Sluff/Admin
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MyssAnne
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« Reply #8 on: May 16, 2008, 05:22:11 AM »

SaraBeth, I am on the cycler, for PD, and do ten hours a night hooked up to it. I also do another exchange during the day (it can be whenever, really), which is less than an hour.  I prefer it, since it is all done AFTER work. I don't know if you have a set schedule, being a parole officer, or if you have to work odd hours, but if you have a block of time, the cycler IS nice, and not as invasive as HD is. 

However you choose, good luck, and we are here for you!!!!

Anne
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willieandwinnie
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« Reply #9 on: May 16, 2008, 05:35:59 AM »

:welcomesign; SaraBeth. It's sounds like you have been through the ringer too. My husband did home hemo but he is disabled so I can't help you much on working and dialysis. I hope you get the answers you're looking for.  :clap; Congratulations on your bouncing baby girl, what a wonderful thing for you to do. We are a great group, full of information and the support you can count on. Read lots and ask questions, we are here to help.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
okarol
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« Reply #10 on: May 16, 2008, 08:43:50 AM »

:waving; Hi sarabeth,
I am glad you could join us at IHD and hope you meet lots of nice folks here. As you have seen, there’s a great deal of good info and shared experiences in previous threads. Feel free to post questions in those areas. I hope you find some solutions on working and dialysis. Also, check out the news articles section for recent kidney/dialysis/transplant stories in the media all over the world http://ihatedialysis.com/forum/index.php?board=38.0 - welcome! Congratulations on being a mom - sounds like you will do great!

okarol/admin
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Ang
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« Reply #11 on: May 20, 2008, 02:36:17 AM »

 :welcomesign; sarahbeth

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live  life  to  the  full  and you won't  die  wondering
Bryce
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Me running on 8th April 2008 (life goes on)

« Reply #12 on: May 20, 2008, 04:07:53 AM »

 :welcomesign; to the site
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kitkatz
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« Reply #13 on: June 13, 2008, 07:54:30 PM »

Welcome to the site.  Have you made any decisions as to which modality of dialysis you are going to pick? I work full time and go to dialysis three days a week.  But then I have a good schedule. I work 7 to 2 then off to dialysis by 3.  It works for me.  Good luck!

Kitkatz,moderator
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