I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Traveling Tips and Stories => Topic started by: Bill Peckham on January 10, 2013, 11:34:41 AM
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January 10
Today I officially paid my balance due for a seven night, eight day 200+ mile raft trip through the Grand Canyon. I am going with AZ Raft (http://azraft.com/) on one of their eight day motorized adventures (http://azraft.com/grand-canyon-trips/all-trips/motorized-trips/), July 3 through 10. As of today I am the only dialyzor going though that may change. My plan is to dialyze four times on the river - going to short, 3.5 hour runs, instead of my normal 7 hour runs over night. It will definitely be an adventure but I won't be able to say that I am the first to do it - only that I will be the first hemo dialyzor to do it in about 30 years (http://news.google.com/newspapers?id=HkAjAAAAIBAJ&sjid=W4MDAAAAIBAJ&dq=dialysis%20grand%20canyon&pg=6836%2C5411230) and here (http://news.google.com/newspapers?id=F8hYAAAAIBAJ&sjid=9oIDAAAAIBAJ&dq=dialysis%20grand%20canyon&pg=6068%2C1777315).
My plan is to keep this thread updated, up to and through the trip as I have on some of my previous trips. The story of this trip started in 2010 when I did a four day three night raft trip down the Rouge River (http://www.billpeckham.com/from_the_sharp_end_of_the/2010/07/nxstage-travel.html) (after trip report (http://www.billpeckham.com/from_the_sharp_end_of_the/2010/07/nxstage-rafting-the-rogue.html)) with my NxStage cycler. The Rouge trip was proof of concept, a trip down the Colorado with a NxStage cycler was technically feasible but would it be allowed? The stretch of the Rouge River that we rafted is road less but there are lodges along the way that were grandfathered in when the river was designated "Wild and Scenic". I plugged my cycler into a wall and relaxed in a lounge chair during treatment when I was on the Rouge - the Colorado would require a generator and there would be no lounge chairs.
After the Rouge trip I would periodically try to figure out if it was possible to raft through the wilderness that is the Grand Canyon, which is when I found a 1983 article about a trip through the canyon using the REDY machine (EDIT: I thought they used a REDY machine but I've now learned it was a device developed at the University of Utah - billed as a Wearable Artificial Kidney). Finally in July of last year out of frustration with not being able to get a definitive answer I wrote directly to Jonathan B. Jarvis, Director of the National Park Service asking "I use hemodialysis, the machine is transportable, but aside from a large amount of supplies, I would need power during a Grand Canyon trip. Is it possible to have power on a Grand Canyon raft trip?" Director Jarvis wrote back a few hours later saying he didn't know but would cc people who should and then the next day a very nice woman from the Park Service who manages Grand Canyon concessions called me and we talked for nearly an hour - the short answer is yes - not only can I bring a generator (due to the ADA) but also an assistant can go at no charge!
So I'm going. I turn fifty in August - to mark the occasion I'm going to reestablish the fact that if you are a dialyzor you can still see one of the wonders of the world, for over a week, by raft.
June 30 - Flagstaff
I've made it to Flagstaff with all five boxes of medical supplies and the cycler, I have five photos here (http://imgur.com/a/z7Ol7) (http://imgur.com/a/z7Ol7 (http://imgur.com/a/z7Ol7)) showing the packing and transport of my hundreds of pounds of supplies down here. The raft company dropped off three boxes of dialysate to the hotel - I had 24 boxes delivered to their warehouse - so I am set to dialyze tonight and tomorrow night (maybe Tuesday night).
Tomorrow I have an appointment at the raft company with the trip leaders to go over logistics and details - I'll share the details tomorrow night. Pretty excited. Now if only the weather would cool off a bit.
July 2 - Flagstaff
The weather just broke, it has gotten noticeably cooler in the last two hours, from the 80s to the 70s. I think we'll have temps in the 100 degree range rather than the 110 degree range, at least that is the hope. I am a bundle of nerves, I keep moving my stuff from one box to another and futzing with my gear. I had a bit of scare Sunday night when the cooling fans went out on the machine I brought from home, but I used the backup cycler Monday night and a second machine arrived today so I feel pretty confident that the two cyclers, two generators and two rafts will get me through the whole trip. Still, I am a bundle of nerves. I doubt there will be much sleep tonight.
We have a group meeting at 7PM at the hotel and then I'll get on as soon as I can after that. We're to be on the bus at 7AM tomorrow morning so that means I should get off dialysis between 5 and 5:30AM so I can have everything buttoned up, eat breakfast and be down in the lobby on time. There will be 11 of us going with 5 staff from the rafting company. Once again I selected a great outfitter, AZ Raft has been great to work with; I met the trip leader Randy yesterday - easy going with lots of experience. One question I had was when would be the best time to dialyze - I was thinking at first light but after talking about it I'll do it once we stop for the night. Their idea was that I will be dialyzing on the raft since it will be the least sandy/muddy spot and it is coolest by the river. Just as long as the lines keep the raft on shore it should be fine.
One concern (among several) concerned the fluid - dialysate/saline - and the high temperatures but after seeing the rafts I am not worried. The 33 foot, four pontoon raft, has storage in the middle between the two main pontoons and because it is so close the 50 degree water it keeps things pretty cool. They're able to have fresh produce during the trip so the dialysate might be cool enough to cool me down during treatment. I think it is funny because NN&I in their blurb about the trip said I would be dialyzing on a raft and I thought, well not quite but actually ... Yes. I will be dialyzing on a raft.
Hope my next update is on July 10th - with pictures and video.
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Wow, Bill, only a few months younger than me, but certainly more adventurous. Adventurous to me is simly traveling with a dialysis machine but then I was never an outdoorsy person. In fact, dialysis prompted me to try some outdoorsy things than I probably would have done, and I"m proud of that fact. Best wishes on your adventure.
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Oh boy, I can't wait! This is gonna be fun!
I'm assuming you will be posting photos... :thumbup;
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oh this IS going to be fun!! Bo and I always tell your 'other' rafting story to even strangers, so now, we get to *sort of * do this one with you ;D Thanks so much for thinking of us and sharing this fun with us. I can hardly wait!!! :yahoo;
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Very cool Bill! I look forward to following your adventure! :cheer: :cheer: :cheer:
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Bill, I was thinking that I wouldn't mind doing this too as a late birthday present. However I cannot see anything for the dates that you are quoting.
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Wow! Sounds like fun! Keep us updated!
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Can't you just go to a movie about the Grand Canyon?
:bow;
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Bill, I was thinking that I wouldn't mind doing this too as a late birthday present. However I cannot see anything for the dates that you are quoting.
I booked the whole trip (12 spots) - if you are interested send me an email, let's talk.
Oh boy, I can't wait! This is gonna be fun!
I'm assuming you will be posting photos... :thumbup;
Eventually there will be pictures and video but during the actual trip there will be no communication - for those eight days no news will be good news.
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Eventually there will be pictures and video but during the actual trip there will be no communication - for those eight days no news will be good news.
What?? No helmet-cam?? ;D
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Eventually there will be pictures and video but during the actual trip there will be no communication - for those eight days no news will be good news.
What?? No helmet-cam?? ;D
Oh there may be Go Pro helmet-cam video just no helmet wifi
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Bill, this is truly awesome news. You are such an inspiration, and not just because you are a dialyzor. I am eager to see the videos. :2thumbsup;
Aleta
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Bloody fabulous...no pun intended. Sounds like a blast Bill. :flower;
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Can't you just go to a movie about the Grand Canyon?
:bow;
yeah, that's more my speed too.. *LOL*
I prefer to wander the wilds of Manhattan.... *G* But this sounds like it would be an awesome trip.. I can't wait for the photos
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Cool. Looks like fun.
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wow Bill.
In the spirit of (and footsteps of) John Westly Powell.
--Dan
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The flight is booked. The hotel for pre and post river is booked. I'm a bit nervous but it should all come together. I've been working so much this year that time has flown by, it'll be June this weekend! I'm starting to count the days.
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The flight is booked. The hotel for pre and post river is booked. I'm a bit nervous but it should all come together. I've been working so much this year that time has flown by, it'll be June this weekend! I'm starting to count the days.
Oh boy! What an adventure! (I keep hearing that Deliverance banjo, off in the distance, hahahah)
Best wishes all goes well. How many people are going?
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Have a great trip Bill, look forward to hearing all about it.
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I envy you your adventure.
:beer1;
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Just saw this thread!
What an absolutely awesome plan.
I hope I'm recovering from a tx in August, but wow. How are the plans going? I'd love to hear all the details.
cheers,
skg
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Bill that is great. And my clinic nurses get upset if I do a PD session while on a motorcycle ride. Hope you enjoy and please keep us updated. Grumpy
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.
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They should make a movie out of Bill's Excellent Adventure!
Who should play Bill?
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How about Bill as himself? :)
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How about Bill as himself? :)
Because you would probably be too busy! Lol!
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I just found this article http://news.google.com/newspapers?id=F8hYAAAAIBAJ&sjid=9oIDAAAAIBAJ&pg=6068%2C1777315 (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.
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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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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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Sending positive thoughts of all going as planned Bill...and looking forward to hearing all about this wonderful adventure. :cheer:
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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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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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:2thumbsup; It must be TOASTY in Flagstaff!
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Send that cool weather that just came your way :)
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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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Who is going with you?
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*
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I'm eagerly awaiting Bill's update on his adventure!!
8)
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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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Here's some raw video of us playing on the Little Colorado - one of our daily side trips.
http://youtu.be/XMxckWI9yow (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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Glad you got home safely. How beautiful that is!!!!Oh, I mean the river, well, you too!! Welcome home.
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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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:thumbup; So glad you had a good trip - look forward to hearing all about it!
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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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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.
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:clap;
:cuddle;
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Glad all went well Bill! You give life to the words "we dialyze to live, not live to dialyze"
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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
- Grand Canyon '13 - miscellaneous photos (http://www.flickr.com/photos/53469571@N00/sets/72157634730926781/)
- Grand Canyon photos from Ben (http://www.flickr.com/photos/53469571@N00/sets/72157634730603255/)
- Grand Canyon photos by Kathleen Radtke-Fitzpatrick (http://www.flickr.com/photos/53469571@N00/sets/72157634736795098/)
- Grand Canyon Dialysis photos by David Huff (http://www.flickr.com/photos/53469571@N00/sets/72157634709483822/)
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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 (http://www.youtube.com/watch?v=7VqIZxPyLo0)
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Here is another video from the trip
http://youtu.be/-2R90zRLE0g (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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Wow! Great photos & video! Not sure I would be brave enough to take a white water rafting trip!
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Here is a video of a talk I gave in St Petersberg back in October
http://youtu.be/377NEvGTvVU (http://youtu.be/377NEvGTvVU)
The sound quality is not as good as I'd like and if I ever have any time I will add some more photos and video - and try to re sync the part of the talk when I am talking over a video that somehow that got switched around (I didn't (wasn't able to) embed the video in the PPT so a different video was swapped in its place) but the talk gives more detail of the trip then I have written.
I'm flying to Utah on Tuesday to interview John Warner, who I mention in the talk. Hopefully the interview will get me to write up my trip more completely.
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:2thumbsup; :2thumbsup; :2thumbsup;
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Great presentation, Bill.
26:00 is a wonderful shot of the rapids!!!
Bully!
8)
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Love the video! :2thumbsup;
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I'm glad you got to live the dream. That was great!
:clap;
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Doug Johnson and I did a KidneyTalk about the trip that just went live http://www.rsnhope.org/kidneytalk-podcast/show-index/adventure-hunters-dialyzing-in-the-grand-canyon/ (http://www.rsnhope.org/kidneytalk-podcast/show-index/adventure-hunters-dialyzing-in-the-grand-canyon/)
I think I'm Lori's most frequent guest, this is the forth time I've been on.
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Doug Johnson and I did a KidneyTalk about the trip that just went live http://www.rsnhope.org/kidneytalk-podcast/show-index/adventure-hunters-dialyzing-in-the-grand-canyon/ (http://www.rsnhope.org/kidneytalk-podcast/show-index/adventure-hunters-dialyzing-in-the-grand-canyon/)
I think I'm Lori's most frequent guest, this is the forth time I've been on.
:2thumbsup; I will listen!
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What a great "Kidney Talk" podcast!
Thank you, Bill.
Viva l'Italia.
:beer1;