I made it to West Yellowstone. It’s 2 PM here so I have time to walk
around town and then get on dialysis.
It took two trips through the lobby and up the elevator to get most of the stuff up to the room using the cart I have but I still have to bring the largish garbage can through. I keep expecting to get asked a question but so far people are just holding open doors for me and the dog.
Great drive today. I stopped in Virginia City, a historic old west town. I ate lunch, walked around and had an old timey picture taken with the dog. They said they’d email me the photo.
I think I’ll open a flicker account tonight and start up loading photos of the trip. I’ll post the link once I get the account set up.
Well, I guess I’ll go look for food to take back to the room and get on dialysis early so I can start early tomorrow and spend time in Yellowstone.
Here is my dialysis room last weekend as I was getting ready for this trip. To me this is the ideal set up - the PHD for day to day use and the System One for travel and backup.
One question I don’t know the answer to - how long do I need to leave the System One plugged in after treatment. Tonight I can just let the fan run but I can imagine dialyzing in the morning and having to unplug right after treatment. Most likely that will not come up this trip.
I ran 20 Liters tonight but before I left I received the okay to try up to 30L. Tomorrow will be an easy day - just 90 or so miles to cover getting from the west side of Yellowstone to the east side - and even with many stops I should be at the Elephant Head Lodge for my two night stay by early afternoon. Maybe starting tomorrow I’ll try a 25L run followed by a 30L.
I’m pretty sure I wont have internet for a couple days but these days you never know. Posting pictures is proving to be a multistep process - I had to wipe my drive a few weeks ago and have yet to replace all the software including a good photo editing program. To get that one photo’s file size down I had to email it to myself through Google’s Picasa program.
Yes, it would nice if this was the ‘norm’ - a machine to use at home for nocturnal, plus the ability to share/borrow/hire a portable for holiday or other travel. Hopefully, it’s not too far off, for all of us!
Enjoy the trip…
Yes, it would nice if this was the ‘norm’ - a machine to use at home for nocturnal, plus the ability to share/borrow/hire a portable for holiday or other travel. Hopefully, it’s not too far off, for all of us!
Enjoy the trip…[/quote]
What are you talking about? NxStage System One does Nocturnal!
Yes I know, Gus. But (1) we ain’t got em here yet, (2) by the time we do, there may be a few rivals about and (3) some units may well be tied into Fresenius (or whoever) contracts which would not facilitate all home patients suddenly ‘trading up’, whereas they may be able to get some portable beasties in & apportioned on some sort of roster basis, to people who want to get away.
I’m sitting on a side street in Chamberlain SD poaching someone’s unsecured wi-fi. Had a great time in Wyoming, three treatments, no issues/alarms. I ran 25 liters the last two nights and felt way better. I think I will skip tonight and drive until late. Finally figured out how to take remote pictures with my camera so once I size them right I’ll post them.
I better get going before someone figures out what I am doing. No sprint cell service since Old Faithfull, I know I have messages but I am too cheap to roam to get them. On to Minnesota then Wisconsin.
I found a hotel that had room for me and Cairny about 11 miles over the boarder from South Dakota in Luverne, Minnesota. Here is a shot of me dialyzing at the Elephant Head Lodge. I ran 25 liters both nights and felt heaps better - it felt the same as the difference between four and five hours incenter.
Like a goof I forgot to talk while filming. This is right about at the end of the run, all the fluid has been removed I’m just finishing up the dialysate.
Tomorrow I should have a pretty easy drive into Madison, Home Dialysis’s Mecca. I am sure you all, like me, face Madison when you’re dialyzing at home.
P.S. Nice photo shoot! Great looking little cabin there… aw man, nice video! Thank you for that one! …Dang, can’t imagine you all alone without a human partner but only Cairny around! …by just staring at those photos and video it seems like you were able to grab a portion of your freedom and privacy of doing dialysis!
Ha ha, don’t know about facing Mecca from down here, maybe we Aussies would have to stand on our heads!
We have good friends that live in madison, they belong to the Friendship force, travel the world and stay in peoples houses and get to know the locals.That’s how they met us.
Gus , how can Bill be alone, he has all of us on the road trip every inch of the way. 8)
I made it to Chicago last night after stopping off in Madison to visit with Dori. I was going to dialyze at Dori’s but my Mom’s house is just a few hours away and she was cooking a Turkey - Mom knows how to get me to show up and like I said, I will dialyze for food.
I’ll try to set up the Flickr to be more usable but here is one photo I’ve managed to upload.
Last night I ran 30 Liters for a 3 hour 45 minute run, finishing up in the wee hours of the morning. I’m trying to catch up on email and some work that came up but so far it’s been a great trip. I can quibble with this or that aspect of the System One but one thing is for sure it has given me back some nearly forgotten travel dreams.
It’s been over 16 years since I cruised the beautiful waters of Washington State and the adjacent Gulf Islands of Canada. Now I, and friends and family, are already planning a couple weeks on a bare bones charter next year. I’ll have to brush off my Captain skills - hope it is like riding a bike, and it’ll all come back.
I love to road trip - I know driving long distances is not for everyone but it sure is for me - the open road is great. I can imagine setting up a motor bike trip with a camper full of supplies with some buddies switching off between a camper and a couple of bikes.
I’ll spend a couple days here at my boyhood home and then head back out Thursday. The open road calls, I can seemyself planning/taking months long trips in the near future.
I carry my psp with me and just about always can find a unsecure wi-fi. I used to leave my network un-secure. Then after seeing how easy it is to get into someones system, I secured my network.
Bill, it is very cool that you are able to take the NxStage on a trip like this. I am still baffled that they let you run by yourself. I guess it is cause you are awake when you run. Still doesn’t make since with the way we were trained. Different clinics have different rules. Our dream is to have a RV and to travel around the US with the machine. Maybe even be a campground host somewhere. I love the open road so very much. The northern states are very beautifull to drive through. If you get a chance check out Feasting on Asphalt http://www.foodnetwork.com/food/show_ab . Alton Brown travels across the country on backroads and road food. I enjoyed it a lot, brought back memories of traveling…
Best of wishes to you and your travel companion…
LSB
ps; is cairny a Bernese?
Thanks Gus, I suppose. I think I look exactly like a dialyzor.
I can only speak for myself and the way I see it; why I am comfortable dialyzing alone at home and now on the road. The first point I would make is that dialyzing is not more dangerous than the galaxy of other things I do or have done. When I was 12 my parents signed a waiver to allow me to SCUBA dive, an activity I have continued to this day. Diving is something with true but manageable risks, it takes a level head and attention to detail to enjoy the activity safely.
When I was seventeen I took flying lessons. My high school offered ground school and the instructor taught flying in his Cessna 150 after school and on weekends. I have about 40 hours of solo flight (all done as a teenager). I think dialysis and flying have much in common as I have written but self-dialysis and piloting a plane also have much in common: moments of terror book ending hours of boredom. Flying also is something with true but manageable risks, it takes a level head and attention to detail to enjoy the activity safely.
When I had my transplant in 1988 to 1990 I was in the yacht charter and brokerage business. I owned and managed power boats that I chartered and captained. A 50 foot DeFever with twin 450 horse diesel engines is a mighty piece of machinery and in fact I did once consider abandoning ship as I was piloting the boat up to Victoria alone and the cabin filled with smoke. However I kept a level head and identified the source of the smoke - it turned out to be vaporized antifreeze - exciting but manageable.
Last year, alone I remodeled my kitchen. This required that I rent tools from the local rental agency: saws, nail guns, power hammers. I would rate this as a far more risky activity than self dialysis, but I would again say that self remodeling is something with true but manageable risks, it takes a level head and attention to detail to survive (and keep ones sanity). As a Journeyman Trade Show Specialist through the Carpenters Union I know many instances of people losing focus and losing fingers or even, in one instance, their lives when a simple ladder was not accorded the respect even a ladder requires.
So I ask you - why should dialysis be any different? After 16 years I have an earned confidence in my ability to feel how my treatment is proceeding, to monitor the process and respond to the unexpected. I think I am not taking undo risks, and as always risks have to have a context. I do not see self-dialysis as a game of Russian Roulette with an inevitable morbid conclusion. I see self-dialysis as life affirming activity very much like SCUBA diving or parachuting (something else I’ve done).
Self-dialysis is something with true but manageable risks, it takes a level head and attention to detail to do safely. I would prefer to have a partner - if you know any single Nephrologists who enjoy dogs and travel, let me know - but I don’t have a partner and I am not going to wait for one to show up for me to start living my life. I know everyone involved in my care wishes I had a partner but it is not something I can make happen or if I could make it happen I don’t know how. Until I figure it out I am very grateful that I have been given the opportunity to use high dose dialysis and make the sort of risk decisions other 43 year old people are allowed to make.
My number one point is that I do not believe kidney failure should call ones judgement into question. Self-dialysis is and should be my call.
Cairny is an Australian Shepherd named for Cairns Australia. The ‘r’ is silent so his name is pronounced canny which means shrewd or clever, so the name is doubly apt.
@ bill, I myself am in no way questioning your judgement. I am sorry if my post came across that way. When we first started training I had no idea that they would tell me not to be alone on the machine. I understand that like many things we do with our lives I could make the call to not need a partner. Yes, that would be a calculated risk. I myself take many of those too. I ride a skateboard and I have osteopenia. My last fall broke my upper greater trouchanter( hip at the top of te femur). I am still healed from it and it happened in April. Am I never going to ride a skateboard again? I seriously doudt that I won’t be on a board asap. The next fall could land me paralized for life or even dead. Is the joy I get out of skateboarding worth it? Yes it is very much so. When I stated it baffles me, I was not talking about your decision to run alone. As you stated also it is not a decision, you do not have a partner and you want to keep living your life. I was confused as to how you got a machine from a clinic. At my clinic they would not have given you one. If my partner were to leave me. I would try and keep it under wraps and keep running on my own untill they found out. Then they would take my machine from me. So like I said different clinics different rules. Also you are not running nocturnal either. I assume that you stay awake through your txs. That way it would be a lot easier to pay attention to what is going on with your Tx. Please don’t take any of my posts as hostile or negative in anyway. If I am being hostile or negative I will try and make it blatently clear. Please understand that I have a communication problem and sometimes it is not clear where I am coming from. I do think of you and your journey and send you the most positive energy and love. Not out of a fear that you are in danger, but out of a kindred feeling towards your journey… Be safe and keep blazing the new good ground…
LSB
Rules vary from clinic to clinic and may depend on such things as how medically stable the patient is, how confident the clinic is that the patient will do what he/she needs to do so far as following the treatment plan, how level a head and attentive to detail the person was in training and beyond. I suspect a big part of the decision is based on how concerned about legal liability the clinic’s (or corporation’s) risk management team is.
I have heard from leading physicians who were involved from the start of home hemo that training a partner was just something they happened to do and that a partner turned into a requirement later.
BTW, I know people who do nocturnal home hemo alone today with no partner and with the full knowledge and consent of their clinic. Years ago, I worked at a clinic where there were a couple of patients that staff suspected dialyzed alone. No one asked and the patient never told as far as I know. These patients were stable, well trained, and knew when to ask for help.
I assure you that my ability to do my treatments is not in question. I was on CAPD for over 11 years with only two infections. I think maybe at my clinic it has more to do with using the machine nocturnal. Being that the NxStage is not approved for nocturnal use. So the liabilty issue sounds correct in that regards. I go in on friday and I will try and get a better picture as to why I am required to run with a partner. Not that I would rather run alone on a dialysis machine. Just to clear up some of the missunderstanding I seem to have stirred with this.
LSB
I’m not at all LSB, I should have made it clear that I was using your post only as a jumping off point for concerns that I have heard from a wide range of sources. Actually a few days ago a spammer selected a past thread on this topic that I missed at the time and brought the thread to the top of the board - Cathy stood in well for we self dialyzors. I agree with Cathy’s points but I wanted to make a few of my own; your question was all it took to get me going.
The fear of novel lawsuits is a very common reason given and since it is impossible to prove a negative it is an objection that is impossible to over come. But I think Cathy said it and I’ll say it too … forcing those of us who are single to forgo high dose dialysis is the greater risk. The risk of incenter chronic under dialysis is greater than the risk of self dialysis.
One last point that has been kicking around my head: how can I have the legal right to not dialyze at all but not self dialyze? That seems to put those who would require a trained helper/sitter in a difficult to defend position.
Like Beth I’ve known those who self-dialyzed under a don’t ask, don’t tell policy. Mike Matson for one. He returned to incenter dialysis when he judged the risk too great and he remains my role model. I think this is a topic that we dialyzors have not had much of a voice in and I welcome this board and others for the opportunity to put forward pro self-dialysis points. In general I have always said that blanket provider prohibitions - food, visitors, or self-dialysis - speak poorly of the provider and should be challenged.
Well after five uneventful runs at my Mom’s house in Chicago I am packed up and ready to go. All the dialysis stuff is stowed in the van, about 6 days worth of supplies but I only have one more run planned.
The plan is to leave here early tomorrow morning and drive to Wall South Dakota, where I have a room for the night reserved at a Motel 6. No dialysis tomorrow night so I can get in when I get in - I think I’ll take one side trip to Pipestone National Monument in Minnesota. I like the idea of having my stop for the night in Wall because you start seeing roadside signs for Wall Drug as soon as you start along the road.
Wall Drug has literally thousands of roadside billboards across the country. Telling you how far, “1,564 mile to Wall Drug” or that “Veterans receive free coffee” and that they have “Ice cold water”. So by staying at a hotel in Wall every time I see a sign it’ll mean I am a little closer to resting my head for the night.
Then my plan on Saturday is to hit some back roads through the Black Hill of South Dakota (home to Rocky Raccoon) to see Rushmore, Custer and the Crazy Horse Memorial. I have a hotel for the night booked in Billings, Montana (another Motel 6). I should be able to get to Billings by dinner and in time to settle into my last System One treatment of the trip - number nine. Then on Sunday I’ll have about an 800 mile run into Seattle, so if all goes well I should be posting while dialyzing at home on my PHD Sunday night.
It has been fun here in Chicago visiting with family. Yesterday was my birthday so this visit has been one nice dinner after another and since I am dialyzing daily no renal diet to speak of. Instead of heading off for dialysis every other night (the last few visits to Chicago I’ve been running nocturnally incenter at an FMC unit) I’ve been dialyzing in my Mom’s TV room watching a movie or tonight the Chicago Bears beating the Cleveland Browns.
I think incenter nocturnal is a great option when traveling but daily on the System One has that beat by mile.
…Dang, can’t imagine you all alone without a human partner but only Cairny around! …by just staring at those photos and video it seems like you were able to grab a portion of your freedom and privacy of doing dialysis!