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Dialysis: Transplant Discussion
I need your pearls of wisdom
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Topic: I need your pearls of wisdom (Read 2267 times)
pelagia
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I need your pearls of wisdom
«
on:
August 17, 2008, 11:10:22 AM »
My husband is going to start traveling again in less than a month. He plays guitar for a living and will be resuming his life "on the road" albeit to a far lesser extent than before, when he could easily be gone half the year.
This traveling will involve airplanes, airports, concert venues and music festivals with lots of people who want to shake hands or hug him, crazy schedules, staying up late, and more - fun if you like that sort of stuff (
), but also challenging in terms of staying away from germs, maintaining a med schedule and just generally not wearing himself down. Some of the trips will last multiple weeks.
Please share any ideas or pearls of wisdom with me. I am most worried that he is going to forget to take his meds. Sometimes I will be traveling with him and I could get one of those alarm thingies I read about somewhere here on IHD. He won't even wear a watch, so I don't feel confident that I can get him to carry something with alarms. Also, I don't want to be nagging him or being pushy with folks about hugging him, but I am afraid that it is going to make me crazy. If he has to be around a bunch of people should he focus on washing his hands a lot? Should he wear a mask on a plane? What are the real risks?
Maybe the best approach would be for me to take xanax and stop worrying altogether
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
Lori1851
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This is me Lori , Dustin's mom
Re: I need your pearls of wisdom
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Reply #1 on:
August 17, 2008, 11:39:00 AM »
He definitly needs hand sanitizer with him at all times if he can not wash his hands. As for the meds buy a big pill container that has morning, lunch, supper and evening slots. I use to fill Dustin's a week at a time. He needs to wear a watch or set his alarm on this cell phone if he has one to remind him to take his meds.
Lori/Indiana
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KT0930
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Re: I need your pearls of wisdom
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Reply #2 on:
August 17, 2008, 11:44:56 AM »
I would be either washing my hands a lot, or using hand sanitizer if there's not a sink and soap available. While waiting for flights, I would sit as far from crowds as possible, though I realize it's not always possible. When on the plane, I would suggest he have his band mates, if there are any, surround him as much as possible, rather than random other travelers. I've heard that we can become accustomed to the germs we're around, so logically, he'd be accustomed to the people he's around all the time. Like Lori suggested, see if you can convince him to at least set an alarm on his cell phone, if he carries one. That's what most of us on here do, I believe.
Good luck, though I know relaxing about it is difficult!
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
okarol
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Photo is Jenna - after Disneyland - 1988
Re: I need your pearls of wisdom
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Reply #3 on:
August 17, 2008, 01:08:13 PM »
I programed Jenna's phone for the immuno's every 12 hours. Any other meds can be taken when convenient, but the immuno schedule is important to stick to.
According to the Centers for Disease Control and Prevention (CDC): the most important thing people can do to keep from getting sick and spreading illness is to clean their hands.
As you know, soaps are cleansers — they actually clean hands by removing dirt and grime. Sanitizers, on the other hand, kill germs but do not clean. But when washing hands is not an available option, keep using the sanitizer.
I always worry about Jenna. I guess that's the way it will always be. Maybe Xanax is a good Idea!
Please send me some too!
I am sure he will be fine! As long as he pays attention to any unusual symptoms, stays hydrated and gets rest when he can, he should do great!
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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
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News video:
http://www.youtube.com/watch?v=J-7KvgQDWpU
G-Ma
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Re: I need your pearls of wisdom
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Reply #4 on:
August 17, 2008, 02:36:47 PM »
As KT said, possibly try to involve the people he is with all the time in what he has to do and it will become second nature and I'm sure they won't mind as they will be glad he is there. I'm anal about washing my hands and everyone who come in is told to wash.............oh how about a valium salt lick?
?? we could share.
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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.
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Aug 5, 08, trained NxStage and Home on 9/3/2008.
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Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
stauffenberg
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Re: I need your pearls of wisdom
«
Reply #5 on:
August 17, 2008, 03:29:30 PM »
Just a few days after my transplant, I took a 26-hour plane flight and had no problems, even though the air in the cabin was constantly recirculated, so I was breathing and re-breathing everyone else's germs for the entire flight. In the three years since the transplant I live my life just as I always did and take no precautions at all, aside from washing my hands when I come home from being out anywhere. I even work at a university where there was a menningitis outbreak and all the students were warned to take precautions, but I don't worry. Results may vary from one patient to another, but for me, the whole post-transplant germ fetish seems to have proved unnecessary.
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MIbarra
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Stopping to smell the bluebonnets
Re: I need your pearls of wisdom
«
Reply #6 on:
August 17, 2008, 04:04:41 PM »
I'm around kiddos quite a bit since I'm a teacher so I've been exposed to flu, colds, chicken pox, strep... The only precaution I use is washing hands or using sanitizers and a little Lyson on their desks, doorknobs, etc every once in a while. They hug quite a bit and touch EVERYTHING so I think your hubby will be okay with some frequent handwashing.
I also just flew to Mexico and stayed a week and so far didn't bring any bugs with me. I watched where I ate and had only cooked foods and obviously did not drink the tap water.
«
Last Edit: August 20, 2008, 08:08:38 PM by MIbarra
»
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Cadaver transplant April 29, 2007
pelagia
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Re: I need your pearls of wisdom
«
Reply #7 on:
August 18, 2008, 09:26:37 AM »
Thanks all for the useful perspectives. I feel better already...
I do remember reading someplace that the number one killer of kidney transplant patients is heart disease, so that also helps to put things into perspective, doesn't it?
For the festival we are going to next month, they are putting us into a nice B&B rather than the chain hotels where all the other performers will be. I am looking forward to that.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
monrein
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Might as well smile
Re: I need your pearls of wisdom
«
Reply #8 on:
August 18, 2008, 01:08:39 PM »
I also never took any special precautions post transplant and was back at my university teaching job after just five weeks. I'd wash my hands regularly but not fanatically and the hand sanitizers weren't around the way they are now. I ate in many restaurants although I tried NOT to do my usual hole-in-wall habit which involves trying places that most people won't even enter. Had no problems at all. The worst health issue I can recall was my bout of chicken pox which I never had as a kid but which hospitalized me here for ten days. The biggest thing though is making sure that Stephen doesn't miss doses of meds. I always used to carry a morning dose and an evening dose with me in case I was out, realized I'd forgotten and couldn't easily go back home. Several times I was glad I did that.
Best of luck with the tour and I bet S. will be glad to be back doing his thing with the harp guitar.
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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
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