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Author Topic: Taking dialysis down the Colorado River - eight day Grand Canyon raft trip  (Read 15252 times)
MooseMom
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« Reply #25 on: May 28, 2013, 10:14:55 PM »

How about Bill as himself? :)
  Because you would probably be too busy! Lol!
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« Reply #26 on: May 29, 2013, 10:18:54 PM »

I just found this article http://news.google.com/newspapers?id=F8hYAAAAIBAJ&sjid=9oIDAAAAIBAJ&pg=6068%2C1777315 which I can't copy, only link to but I did take a screen shot of how in 1983 on perhaps the first dialysis Grand Canyon trip they used Colorado River water to provide dialysis! I've been reading all I can about these Wonderland Travel trips but I still have a lot of questions. I thought the machine they were using was developed at the University of Utah and used about 5 gallons of water (about 20 liters), why didn't they just bring the water? But I don't know how many dialyzors they had on a trip at one time, if it was six or more then I suppose a gas powered RO water treatment unit made sense.


It's been awhile since someone using hemodialysis has rafted the Canyon but I wouldn't be surprised to find out that someone using PD has made the trip recently, doing manual exchanges. Google searches haven't turned up much other than DaVita talking about taking a mule ride down into the Canyon as part of the freedom of PD. No PD Grand Canyon Rafting stories that I could find.


Using the Colorado to make your dialysate? That would be an adventure.
« Last Edit: May 29, 2013, 10:21:03 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
aharris2
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« Reply #27 on: June 09, 2013, 10:26:09 AM »

How about Bill as himself? :)

Who could play him better? I am so excited for you and I can't wait to read about your excellent adventure.

We first "met" on an adventure travel site over a decade ago - your adventure not only continues but intensifies.

Seize the moment my friend!
 :clap;
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« Reply #28 on: June 26, 2013, 07:16:58 PM »

In one week I should be eating dinner on the banks of the Grand Canyon after our first day on the river - can't believe the trip is nearly here, a year in the planning.

I went over worst case scenarios yesterday and today, as far as what I will do if the equipment: cycler, generator, let me down >shudder<

The plan is that I will dialyze nights two, three, five and six. If, on night two or three the treatment can't happen I will have to, on day four, head up to the south rim from Phantom ranch at Mile 89. Hopefully I'd get to the rim by mule because I would hate to do a six hour walk of bitter disappointment while gaining 5,000 feet. The machine would have to finish the trip and I would need a ride into Flagstaff where I would either dialyze inpatient or maybe there could be a replacement cycler and a hotel room waiting.

If I can't dialyze night 5 or 6 I would switch to an emergency diet (watching potassium mainly, fluid shouldn't be an issue in the heat) and finish the trip, maybe in seven days instead of eight depending when and where I realized I wouldn't be able to dialyze.

The main medical concern is dehydration so I'll probably try to start the trip a kilo or so over my normal target and monitor hydration closely via the skin pinch test.

I really want to complete this trip; it's tough to think about coming up short but a lot of what I like about travel is letting go of the illusion of control that I am so use to at home. I feel like rafting the Grand Canyon is something people do, so I ought to be able to do it. People who use dialysis ought to be able to do it, that will be true no matter what happens on my trip but I would sure like to demonstrate it definitively.

I told my Mom that no news will be good news, hopefully the first word anyone will get will be a big thumbs up the evening of the 10th.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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Might as well smile

« Reply #29 on: June 26, 2013, 08:24:53 PM »

Sending positive thoughts of all going as planned Bill...and looking forward to hearing all about this wonderful adventure.   :cheer:
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Pyelonephritis (began at 8 mos old)
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(2 1/2 hours X 5 weekly)
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« Reply #30 on: June 26, 2013, 09:59:00 PM »

I think you're awesome for taking this trip. Next thing you'll be giving tours to home hemo patients, down the river, or inspiring others to do so. And they will stop calling it "home" hemo because it can go anywhere! Have a great trip!
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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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« Reply #31 on: June 30, 2013, 08:12:40 PM »

I updated my initial post. I'll do that for trip reports and answer any questions down here in the thread. There is a link to pictures with descriptions.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #32 on: June 30, 2013, 10:54:27 PM »

 :2thumbsup; It must be TOASTY in Flagstaff!
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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
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« Reply #33 on: June 30, 2013, 11:15:16 PM »

Send that cool weather that just came your way :)

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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #34 on: July 02, 2013, 05:01:23 PM »

Last update up top, if all goes well, until July 10/11. It's been a year in the planning and now I'm about 18 hours from starting down the river. >insert primal scream<
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
amanda100wilson
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« Reply #35 on: July 03, 2013, 09:35:12 AM »

Who is going with you?
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noahvale
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« Reply #36 on: July 03, 2013, 04:44:26 PM »

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Zach
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« Reply #37 on: July 10, 2013, 06:26:44 PM »

I'm eagerly awaiting Bill's update on his adventure!!

 8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
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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
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« Reply #38 on: July 10, 2013, 09:42:10 PM »

It was a great trip - I had three treatments on the river, one in particular  under extreme conditions. I guess my previous post here didn't go through because the photo file was too big so you'll have to wait until I get home tomorrow for a proper update with photos, I need to get on dialysis for a full night's treatments now.

I'm actually still emotional talking about the the trip, I didn't expect it to effect me so much, it was a real gift.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #39 on: July 11, 2013, 07:41:39 AM »

Here's some raw video of us playing on the Little Colorado - one of our daily side trips.
http://youtu.be/XMxckWI9yow


Dialysis went well last night now I just need to get everything back to sea level. I think the altitude in Flagstaff is messing with me, but I should be home by 6 tonight
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #40 on: July 11, 2013, 02:40:23 PM »

Glad you got home safely. How beautiful that is!!!!Oh, I mean the river, well, you too!! Welcome home.
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« Reply #41 on: July 11, 2013, 10:14:14 PM »

Made it home with all my stuff, I'll take the weekend to try to piece the eight days on the river together, I'm glad to be home.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #42 on: July 12, 2013, 12:58:36 AM »

 :thumbup; So glad you had a good trip - look forward to hearing all about it!
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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
MooseMom
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« Reply #43 on: July 12, 2013, 02:52:17 PM »

Oh man, that looked like so much fun.  We are all so impressed that you pulled it off.  I am not sure which impressed me most, the Grand Canyon or your packing technique, which was ingenious.  Everything for one treatment in it's own little bag.

(You're not going to believe this, but I'm actually feeling quite motion sick after watching your vid.  How much of a weenie am I?)

Will you be posting about your trip on your blog?

I'm so glad you enjoyed yourself.  Was it all worth it?  I'll bet it was!

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« Reply #44 on: July 12, 2013, 11:24:27 PM »

Was it worth it? Oh hell yes. The eight days I had on the Colorado River, was a peak life experience. It far exceeded my expectations. I'm not sure I thought it would all work out - until I got all the way home I kept expecting something to rear up and bite me, waylaying the adventure. I'm still having trouble talking, even writing, about the experience without getting choked up. Really the trip took me to the limit emotionally and physically but that was the gift: to feel so alive and to see such an awe inspiring place. I feel profoundly grateful that life gave me those eight days.
« Last Edit: July 12, 2013, 11:41:11 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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Volcan Pacaya, Guatemala

« Reply #45 on: July 13, 2013, 06:02:21 AM »

 :clap;
 :cuddle;
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Life is like a box of chocolates...the more you eat the messier it gets - Epofriend

Epofriend - April 7, 1963 - May 24, 2013
My dear Rolando, I miss you so much!
Rest in peace my dear brother...
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« Reply #46 on: July 13, 2013, 06:25:42 AM »

Glad all went well Bill! You give life to the words "we dialyze to live, not live to dialyze"
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« Reply #47 on: July 21, 2013, 09:58:52 PM »

I had to get back to work this week - worked both yesterday and today too, but here, finally, are some photos I posted to Flickr

« Last Edit: July 21, 2013, 10:00:01 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #48 on: July 31, 2013, 10:09:58 PM »

I have a ten minute video up that is just me reflecting on the trip. It's the morning of the final day.


I have tons of video to go through but for some reason QuickTime videos are playing audio only right now. I need to buy a video editor but keep putting it off because I don't know when I'm going to be able to learn how to use it ... so I put this up on YouTube so I could watch it - it took a long time to upload.


It is raw video and by raw I mean that there is an unfortunate 20 seconds that Kyle was adjusting the camera and I adjust the phlegm that had built up in my lungs. I didn't know the camera is on - I suggest skipping the 2:20 to 3:00 minute mark.


http://www.youtube.com/watch?v=7VqIZxPyLo0
« Last Edit: July 31, 2013, 10:25:52 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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« Reply #49 on: August 05, 2013, 07:55:17 PM »

Here is another video from the trip
http://youtu.be/-2R90zRLE0g


more of me talking. Here I am talking about getting on the second time when I had some problems.


I also make an analogy between dialysis and running rivers which I've thought about since the Rogue rafting trip - that for most people dialysis isn't a float trip, there are rapids, and to get through rapids you need your own momentum. You shouldn't just stick out your arm and float.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
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