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Author Topic: Hey.  (Read 2578 times)
Mark
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« on: November 10, 2010, 11:40:26 PM »

I'm not much for introduction threads, but it's required, so why not. 

I came across this site a while ago.  Admittedly, I wasn't much of a fan of the concept.  Somehow, I can't quite buy that a site called Ihatedialysis.com for the purpose of complaining about dialysis isn't negative, but I figured I'd join to satisfy curiosity.  Unlike most people here, I don't have much to say, since I'm...well, relatively happy overall.  I've had CKD my entire life, and I've been on dialysis for about two years now.  A year on hemo, and I'm on PD now.  But the whole "all my life" thing has kind of worked in my favor.  I've never understood the whole concept of people getting depressed or upset over kidney disease and dialysis.  I chalk it up to it being all I've known.  Helps that I'm only 21 now and generally feel pretty good.

So, maybe I'll learn something here.  I mostly just had a specific question I was curious if someone might have advice for, but this isn't the place for that.
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okarol
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Photo is Jenna - after Disneyland - 1988

WWW
« Reply #1 on: November 10, 2010, 11:49:42 PM »

I had the same initial response as you Mark. The name sounded negative and I was feeling grateful that my daughter had dialysis to keep her from dying. But I had some questions, and I joined. I also read Epoman's story early on and seeing it from his perspective made me realize that dialysis is different for everyone. Some people do better than others.
I hope you stick around. We can learn a lot from you, with all your experience.
Welcome,
okarol/admin
 :welcomesign;
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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
Bruno
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TOFF (typical old Fart)

« Reply #2 on: November 11, 2010, 02:36:36 AM »

Oddly enough, Mark, I understand what you are saying although I'm at the opposite end in the scale of life to you. I'm 75 and HD was a gift from God (I'm not religious...that's a figure of speech) to me. It made me feel so much better and happy about life that I soon came to realise how lucky I'd been. I can't say I love it but I certainly don't hate it.
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paris
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« Reply #3 on: November 11, 2010, 06:57:16 AM »

Mark, I am glad you joined. We all had thoughts about the name, but after reading the site owner's statement, I "got it".  I have found great friends here and the support they have given me has been priceless.  Your experiences will be valuable here, especially for the younger ones.  And everyone can benefit from your upbeat attitude.  You will find that is is a very positive site with wonderful members.   Welcome to IHD    :2thumbsup;



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.
monrein
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Might as well smile

« Reply #4 on: November 11, 2010, 07:14:31 AM »

 :welcomesign; Mark.  Glad you joined the site and hope that you'll ask your specific question in a separate thread cuz that's what we do best here..support one another and TRY to answer questions or even just say we don't know but that's an interesting question.
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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
Zach
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"Still crazy after all these years."

« Reply #5 on: November 11, 2010, 07:18:57 AM »

Good to have you join our community!
 :beer1;
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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."
Mark
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« Reply #6 on: November 11, 2010, 09:19:14 AM »

I had the same initial response as you Mark. The name sounded negative and I was feeling grateful that my daughter had dialysis to keep her from dying. But I had some questions, and I joined. I also read Epoman's story early on and seeing it from his perspective made me realize that dialysis is different for everyone. Some people do better than others.
I hope you stick around. We can learn a lot from you, with all your experience.

I know what you mean.  I read Epoman's story last night.  Guy had some pretty bad luck.  I've noticed by now that everyone has a different experience.  Dialysis went relatively smoothly for me.  Honestly, it didn't compare much in my mind to stuff that's come before that.  Some problems with my fistula were pretty much the limit of it, and though that made for some unpleasant treatment experiences, it never had much impact beyond that.  I was lucky enough to never have that wiped out feeling after hemodialysis.  I figure it's my age.  Not to mention, while I did run into problems with my PTH, it wasn't a huge issue.  Compare to someone who had fistula troubles, graft troubles, broke both hips, and wasn't able to walk afterward...yeah, I suppose I can kind of see how we'd have different perspectives on the entire thing.

Oddly enough, Mark, I understand what you are saying although I'm at the opposite end in the scale of life to you. I'm 75 and HD was a gift from God (I'm not religious...that's a figure of speech) to me. It made me feel so much better and happy about life that I soon came to realise how lucky I'd been. I can't say I love it but I certainly don't hate it.

I'm wondering if that's as rare as it seems.  I know that at least at the clinic I went to for HD, there wasn't a bit of positivity in the entire place.  Nobody really had much to do but complain about how much they don't want to be there.  Some just didn't go a few times a week.  I can't say I understand why someone would regularly skip treatments that are helping to keep them alive.  Well, there's also the issue that most people there didn't have a clue about any of it anyway.  I think some of them were pretty convinced that they didn't even need it.

And everyone can benefit from your upbeat attitude. 

I'm inclined to agree.  Not that I think my very presence will benefit people, of course.  I'm very strongly of the mind that attitude can influence a whole lot.  I think that keeping an upbeat attitude will keep you healthier.  Not in a crazy, "positivity is magic" way, either.  But that kind of attitude is bad for your body in the same way stress is.  And of course, your interpretation of how you feel changes with your attitude, too.
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Desert Dancer
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« Reply #7 on: November 11, 2010, 11:13:25 AM »

Hi, Mark, and  :welcomesign;

Seems counterintuitive that such a negative sounding site could be so full of positivity, but there you have it.

Oh, and ask your question! Now I'm curious as to what it is.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
Mark
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« Reply #8 on: November 11, 2010, 11:23:56 AM »

Oh, and ask your question! Now I'm curious as to what it is.

I'm sure it's not nearly as exciting as you're imagining, but I posted it in the Medicare/Insurance board, if you're curious.
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MooseMom
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« Reply #9 on: November 11, 2010, 11:25:29 AM »

Well, Mark, I've had CKD for at least 20 years, but it didn't become an issue really until about 6 years ago (for reasons that are too complicated to go into).  I have spent these years freaking out, depressed, angry and resentful while spiralling down towards dialysis.  I'm not on dialysis yet, but it is only a matter of time, and I am furious about the whole thing.  I've not had a great attitude at all.  I wish I could claim otherwise, but I can't.  So, maybe you already know everything there is to know about dialysis and don't really need the support, but if you could find it in yourself to offer support to people like me who don't yet have it all sussed, we'd be grateful.

Thank you so much for taking the time to join IHD.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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