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Introduction for acspears
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Topic: Introduction for acspears (Read 3466 times)
acspears
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smile, it looks good on you
Introduction for acspears
«
on:
April 23, 2009, 02:34:52 PM »
hey guys, I found this forum this morning and everyone seems very nice so I figured I'd give it a shot
this morning my boyfriend of nearly 7 years was hospitalized and the neph at the hospital suggest he start dialysis asap (they want to do the cath tomorrow and fit him for a fistula in the next week). he had a kidney transplant in 2004 from his father but unfortunately, it didn't stick. going into the kidney transplant he had a creatine of 11.3 and still felt pretty good to be honest; today his creatine is 4.6 and he's a mess
vomiting, dizzy, blurry vision etc.
truth is, he's very scared; he's never been on dialysis in his 25 years of life and I'm scared too. we both know that there really is no other option; he's been bed ridden for a few days and has been calling in sick at work all week. I was wondering how it was your first time and what/who helped you through it? I mean, God bless that there is an option but it is still very scary! he's looking at being on it for 5 to 7 years, until a cadaver's kidney comes up for him to have transplanted and 3 times a week at 3 hours each time.
also, how late do dialysis center's usually stay open?
thanks for all the positivity
EDITED:Split and moved topic to introduction threads, so you can have your own thread- kitkatz, Moderator
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Last Edit: April 23, 2009, 02:53:30 PM by kitkatz
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Zach
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"Still crazy after all these years."
Re: Introduction for acspears
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Reply #1 on:
April 23, 2009, 09:22:14 PM »
Welcome to our community!
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant. Not yet, anyway. Only decided to be listed on 11/9/06. Inactive at the moment.
I make films.
Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat 5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600; Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -): 2,450 Calories, 84 grams Protein/day.
"Living a life, not an apology."
Joe Paul
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Re: Introduction for acspears
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Reply #2 on:
April 23, 2009, 10:54:32 PM »
Welcome acspears, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
Romona
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Re: Introduction for acspears
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Reply #3 on:
April 24, 2009, 04:28:17 AM »
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Rerun
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Going through life tied to a chair!
Re: Introduction for acspears
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Reply #4 on:
April 24, 2009, 04:57:14 AM »
Welcome! There are several options. Have you looked into PD (Peritonal Dialysis). There are no needles and you can do it at home.... by yourself or his self. Take a look at your different options on this site.
I do Nocturnal Hemodialysis incenter. I go 3 nights a week and just sleep 8 hours (more like sleep 6, but am hooked up for
on the machine. That way my days are free and I'm getting longer slower dialysis.
This site has losts of information. Read this:
http://ihatedialysis.com/forum/index.php?topic=5.0
Rerun~
«
Last Edit: April 24, 2009, 05:01:04 AM by Rerun
»
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willieandwinnie
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Re: Introduction for acspears
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Reply #5 on:
April 24, 2009, 05:07:47 AM »
acspears. We are so glad you joined us. There is lots of information in the older threads that might help you, check them out. I'm sorry your boyfriend is going through all this and it's normal to be scared for the both of you. Please post often and educate yourself and your boyfriend to make the best decisions for him. Hope to hear lots from you and you'll get great support from this group.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
paul.karen
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Re: Introduction for acspears
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Reply #6 on:
April 24, 2009, 06:04:50 AM »
Acspears
It is hard when you get pushed so fast into dialyiss. But you found a great site to help you both out.
Like Rerun mentioned look at your options.
Pd vs hemo.
I am predialysis for now but decided to go the PD route. it has less fluid and liquid restrictions and mainly i am doing it to try and be able to continue workling. it is a nightly program while you sleep unlike 3X a week. So it may be more involved but this is the route i am trying first.
I wish you both the best.
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Curiosity killed the cat
Satisfaction brought it back
Operation for PD placement 7-14-09
Training for cycler 7-28-09
Started home dialysis using Baxter homechoice
8-7-09
lola
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I can fly!!!
Re: Introduction for acspears
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Reply #7 on:
April 24, 2009, 06:11:37 AM »
acspears, I like you am the caregiver. My husband also had his 1st transplant and it lasted 15years until we had to go back on Dialysis. I would look into home-hemo, my husband started on in-center but it was draining and he wanted his life back and thanks to all the GREAT peeps on IHD we switched to home-hemo. Otto is able to work full time and do Dialysis on his schedule, he still rides dirtbikes home-hemo has given him his life back. Good luck and know we are all here for you
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www.caringbridge.org/visit/ottomachado
willowtreewren
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My two beautifull granddaughters
Re: Introduction for acspears
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Reply #8 on:
April 24, 2009, 07:11:11 AM »
You have come to a wonderful, caring community.
I am a caregiver for my husband. As many others have said, there are so many possibilities for dialysis. I'm sure your boyfriend will find one that fits into his lifestyle.
Take care, and post often.
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
Wallyz
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Re: Introduction for acspears
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Reply #9 on:
April 24, 2009, 11:14:44 AM »
Welcome. One thing that you might look at is home hemo, and doing it at night. That has been the best option fro me in terms of both health and having my days free.
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paris
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Re: Introduction for acspears
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Reply #10 on:
April 24, 2009, 12:53:57 PM »
You are right, it is all very scary. We are glad you found us. It will give you a safe place to be scared in, and to find out more information. We also support each other and really care. Please let us know how your boyfriend is. Once you post, we start worrying about you like family.
Keeping you in my prayers.
paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
TeenHatesDialysis
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Re: Introduction for acspears
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Reply #11 on:
April 24, 2009, 10:28:00 PM »
I am glad that you found this group. Everyone here is very supportive. I think that he will feel much better once he starts dialysis. I wish that the docs could save his kidney. Has he had his creatinine tested again since it went from 11+ to 4? What was his BUN? That # will give you an idea of the toxin buildup in his system. Then when they perform dialysis the BUN level should go down at least 60%. It tells you how much of the toxin buildup is being cleaned out of his blood through dialysis.
He is lucky to have you by his side. The first time he does dialysis, watch his blood pressure. The nurses like to practice on new patients and sometimes take off too much fluid, your BP drops and you crash (pass out, turn pale...not good).
Stay positive. It doesn't always take that long to get a new kidney. He may find a living donor. I sorry that you and your BF have to go through this. This is a very supportive group. I think that all docs should recommend it to their dialysis patients. I think that the ony reason that they don't recomment it is that many of the people here know more than the docs.
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Susan, mom of Jaclyn, Deziree and Valerie
www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
Ang
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Re: Introduction for acspears
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Reply #12 on:
April 28, 2009, 01:06:40 AM »
ac spears
its all a bit scary in the beginning,but its just like a part time job you volunteer for.
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live life to the full and you won't die wondering
monrein
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Might as well smile
Re: Introduction for acspears
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Reply #13 on:
April 28, 2009, 03:12:57 PM »
There's so much information and support here that I hope you'll find some of the answers to your questions as you read through some of the threads. It is scary and will be so for a while but good information about the choices can help a little.
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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
G-Ma
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Re: Introduction for acspears
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Reply #14 on:
April 28, 2009, 04:33:57 PM »
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07. Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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