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lotuspetal
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« on: March 07, 2016, 09:33:10 AM »

Hello,

I've been lurking for a while and would like to introduce myself.  I was diagnosed with ADPKD many years ago, and have managed to hold off dialysis and, really, many symptoms until pretty recently.  I'm 66 now and it's catching up with me.  I've always been pretty attentive to diet and exercise, so maybe that has helped.  At any rate, I'm experiencing more symptoms lately, and have been on the transplant list with the Mayo Clinic for a little over a year, and searching for a donor.  I moved to be closer to my support network.  Had a fistula placed in January and dialysis is looking kind of inevitable at this point; my mother was on it for over 25 years.  I've been experiencing some fatigue, and, recently, blood in urine, though I try to work past the fatigue (paddled the Grand Canyon in September...) though it's frankly getting a little harder. I've not had any issues with depression, although when you feel like crap a lot of days, you notice more of it, as I'm sure you all know.  This list is a wonderful resource, so thanks for the community of folks who really understand this illness!
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Vt Big Rig
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« Reply #1 on: March 07, 2016, 10:26:07 AM »

Welcome to the site lotus pedal.  :welcomesign;   Glad you found us but sorry you had to.

If you have been lurking long I suspect you have noticed several of the opinions although we all HATE dialysis, it sometimes is not so bad. Better than the alternatives.

I hope you find the information you need here.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
lotuspetal
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« Reply #2 on: March 07, 2016, 01:48:08 PM »

Thanks so much!  Yes, I think I fully grok the title, not looking forward to it but the best alternative at the moment.
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Michael Murphy
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« Reply #3 on: March 07, 2016, 02:32:11 PM »

Welcome to wonderful world of dialysis.  Actually it's really is not as bad as it seems.  You seem to have your act together you already have a fistula, and have given it time to mature.  If you have to start I hope it goes well for you.
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talker
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Talkers oil painting

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« Reply #4 on: March 07, 2016, 02:39:02 PM »

Thanks so much!  Yes, I think I fully grok the title, not looking forward to it but the best alternative at the moment.

Welcome to the wonderful world of IHD.
Enjoyed your use of the term 'Grok'.
« Last Edit: March 07, 2016, 03:18:52 PM by talker » Logged

Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
Charlie B53
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« Reply #5 on: March 07, 2016, 03:17:14 PM »



Welcome to IHD.   I can tell that you are of the type to get things done well ahead of time.  Not of the sort to let things go until the last minute then worry and scurry to get ready.

You've already done well having your fistula in to mature before needed.  And browsing IHD to learn what you can should help you a lot.

Any questions just post them up, members will be glad to tell you everything we know that may help you get your answers.

Take Care,

Charlie B53
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lotuspetal
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« Reply #6 on: March 07, 2016, 09:07:35 PM »

Thanks all for the kind comments; it's been a rough few days and my energy has been rather low.

(And glad to see another R Heinlein / language fan!)
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cassandra
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When all else fails run in circles, shout loudly

« Reply #7 on: March 08, 2016, 01:45:02 AM »

Welcome to the site lotuspetal

    :welcomesign;


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
       still on waitinglist, still ok I think
iolaire
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« Reply #8 on: March 08, 2016, 06:10:09 AM »

Had a fistula placed in January and dialysis is looking kind of inevitable at this point; my mother was on it for over 25 years.

Welcome, just wondering did your mother's 25 years on Dialysis leave you with a positive or negative view of Dialysis?
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Transplant July 2017, waiting for the creatine to fall, dialysis late 2013-2017.

Well on dialysis I traveled a lot and posted a good bit on international trips in the Dialysis: Traveling Tips and Stories section.
lotuspetal
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« Reply #9 on: March 08, 2016, 10:39:41 AM »

That's an interesting question.  For a large part of that time she did home dialysis, done by our father.  He was always very loving and careful, and set up a really nice little room for her to have as good an experience with it as possible.  So, I saw it as an example of love in action.  Now, of course she was often tired afterwards and sometimes nauseous, with cramping and all of the other side effects, but all in all she did well.  When they moved to Phoenix she went to a center, and always spoke highly of the people who worked there.  And, I also know that dialysis has changed since she started it over 35 years ago--she died in 2000. So while I really am apprehensive about curtailing my active lifestyle--hard to raft a river on dialysis, I suppose--overall I know about the details of how it works and the results.  I hope to be able to do it at home, as I am blessed with a very caring and careful partner and family.  So, a little freaked out, but overall feeling Ok about it.
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iolaire
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« Reply #10 on: March 08, 2016, 11:11:30 AM »

Thanks, re this:
So while I really am apprehensive about curtailing my active lifestyle--hard to raft a river on dialysis, I suppose--overall I know about the details of how it works and the results.
I'll be the first to bring up the following:
http://www.billpeckham.com/from_the_sharp_end_of_the/2013/07/wow-it-was-a-fantastic-trip-through-the-canyon.html
http://www.billpeckham.com/from_the_sharp_end_of_the/2010/07/nxstage-rafting-the-rogue.html

Lets hope you are able to keep up your health as that is the most important thing to maintaining your active lifestyle which in turn probably helps you health...
« Last Edit: March 08, 2016, 11:13:03 AM by iolaire » Logged

Transplant July 2017, waiting for the creatine to fall, dialysis late 2013-2017.

Well on dialysis I traveled a lot and posted a good bit on international trips in the Dialysis: Traveling Tips and Stories section.
Charlie B53
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« Reply #11 on: March 08, 2016, 11:28:42 AM »


I'm not very good with the search function, but.....  one of our member on hemo takes his machine everywhere he goes,  Including white water rafting.  It's written and posted in here somewhere.

So you are only limited by your own imagination.   You CAN still do pretty much whatever you feel like, within reason.
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lotuspetal
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« Reply #12 on: March 09, 2016, 09:48:12 AM »

Yes, that is very inspiring!  We usually do private trips, so we do all of the thing that guides do on commercial trips--set up camp, cook, lug stuff--but we also have very kind and understanding friends, so it may still be possible.  I like to paddle some of it myself, but may be confined to a raft.  I'm getting an epo shot this week, so hoping that it will help me feel less low energy!

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Charlie B53
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« Reply #13 on: March 09, 2016, 02:24:15 PM »


IIRC I think it was Zack, took his machine down the Colorado river thru the grand Canyon.  Wrote it up and documented with pictures.  Posted here somewhere.

Hopefully the epo will help.  I haven't needed it yet.  But every other month I have the pleasure of getting IV Iron in addition to my daily iron tablets.  The IV does make me feel less dragged down.
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Vt Big Rig
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« Reply #14 on: March 10, 2016, 04:48:35 AM »

As iolaire posted it was Bill Peckham who took this trip.  No need for search the links are in this thread. Just a few posts down. (or up depending on your settings)
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
lotuspetal
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« Reply #15 on: March 10, 2016, 05:19:47 PM »

Thanks!  I read it, very inspiring.
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