Bill, good luck! …I knew you’d feel that extra sense of freedom with a portable! I just hope that more dialysis machine companies start getting serious and think small…the smaller the better, we really need our life back! 
Where the heck is wall drug? Favorite bumper sticker of all time. I loved that little store/ roadside attraction. Billings was very nice too. Stayed in a comfort inn or something and there was a great chinese food place next door to it. The other cool thing was the made to order breakfast at the hotel. Can’t wait to travel some more…
LSB
I made it to Wall but drove straight through so didn’t get to the Pipestone Monument. The only stops were for gas and about five rest areas so Cairny and I could stretch and such. Had a 200 mile stretch of rain, some quite heavy but at least that kept the bugs away - which in South Dakota smooshed bugs can be as hard to see through as heavy rain.
Tomorow will be a day of options there is alot to see in this part of the country but the distances are substantial. Shouldn’t be a problem to get to Billings by dinner, with plenty of time for dialysis.
Bill-
Thanks for journaling your adventure and giving your view on self-dialyzing.
I too have been self-dialyzing, short daily and nocturnal since 2004. I found your thoughts on this to mirror a lot of what I feel.
Looking forward to your next post and pics!
headbandgrrl
Ok, I talked with the head nurse at my clinic about “self” dialysis, without a partner. She said that it is not part of their protocol. That there is the rare case when a DR will support a patient in their decision to do “self” dialysis. Otherwise protocol calls for a partner to be present when a patient is on the machine. contrary to my believe that daily wouldn’t need a partner, she said daily is more important. Because of the higher blood flow rates, she said. We talked for a bit about it. About my care and what if my partner were to leave us for some reason. She said it would be up to me and my DR. She said there have been Dr’s that would not support a patient on “self” dialysis. She also emphasized that it is only their protocol and does not apply to every situation. @ bill, I am not directing this at you in a negative way. I am only clearing up what I could not say with confidence before. It surprised me that you were running by yourself. Not that I know better then you or any thing like that. I am very new to this part of the dialysis world. I have alot of experience in other arenas of dialysis, not home hemo. I support your “self” dialysis. Yet I think in the view of a public forum it should be made clear that “self” dialysis is not the norm. Yes it is common that patients do all the “work” themselves. All though they are not doing “self” dialysis cause they are not in a home alone. As you yourself pointed out, it is about calculated risks. You and I can judge those risks very well. That is why we have survived dialysis this long. Others can not, for instance. A man on CAPD had a hole in his dialysate bag. So he drained the bag down to below the hole and then filled up with the rest of the fluid in the bag. He got such a bad infection that they had to remove his catheter last week. When I am on the machine even when I am passed out a sleep. Before something starts to go wrong with me, I usually wake up. Not always and that is why I feel the need for a partner. Bill I wish you the very best and you are on my good thoughts list. I would love for you to find that special someone that could be your dialysis partner. I am very blessed with my partner. We are life companions of sorts and can never see parting ways, outside of death. Even then we both hope to be waiting for the other on the otherside. Hope this has not come across the wrong way. If so, please ask for transparency. I will clarify any tiff that anyone has…
Peace;
LSB
In my renal lexicon self-dialysis simply means doing dialysis without assistance. Usually there is someone else in my house - I rent my mother-in-law apartment to a buddy, friends are always stopping by and both my direct neighbors (one a nurse) are aware of the situation, but in four years neither neighbor has been called on (I think they are bit disapointed about that). The more people around the better in my book. To me it is still self-dialysis.
My beef is with the language NxStage used in their FDA 510K aplication in the indication for use section that suggest a trained helper always should be present (this recommondaiton is repeated several times in their manual). I do not understand their reason for this language - particularly including it in the 510k aplication. I believe the language is to the detriment of single dialyzors hoping to use the System One and simply feeds the paranoia of those administrators worried about novel lawsuits.
I in no way mean to suggest that self-dialysis or dialysis by ones self should be thrust apon anyone. I only wish to advocate for the idea that self dialysis should be accepted when the situation is fully understood by the dialyzor. And when a dialyzor can safely self-dialyze that should be applauded.
I agree with you 100% Bill…
LSB
I’m back home in Seattle after a bit more than 4,500 miles and nine treatments away from home in four different locations. I was thinking I would dialyze tonight but I talked myself out of it - I ate dinner, looked through the mail, uploaded a couple videos to Google and I still need to shower, unload the van, and sleep. So yes even though I was generous to my thirst today (I can feel a couple kilos on) I will still wait until the late morning tomorrow to dialyze. My dialysis schedule since I started training for this trip has been as follows.
I took Thursday the 10th off and then dialyzed the 11th through the 14th (four treatments) on the Aksys PHD; on Tuesday the 15th I started training on the System One; I ran incenter on the System One four days in a row, Tuesday through Friday and then at home on Saturday. On Sunday and Monday I ran at home on the PHD and then I took Tuesday the 22nd off. So had run for 11 days in a row 11 on, one off.
Then I ran on the road Wednesday, Thursday and Friday, taking Saturday off. Three on, one off.
Sunday the 27th through Thursday the 31st I ran on the System One at my Mom’s house and then took Friday the 1st off. Five on, one off.
Then I dialyzed last night and will take tonight off. One on, one off.
I probably dialyze for at least the next six days. And , yes tomorrow I will leave some fluid on since I am sure to have more than three kilos to remove but I’ll just watch it and be dry by next weekend. Did I achieve my HDP target of 100? Not lately. But I did better than I have during past vacations.
One video I uploaded shows my hotel room before I get on treatment - and yes I did manage to speak for this video, in fact I jinxed myself. Here is the link:
http://video.google.com/videoplay?docid=-3506414701889948077&pr=goog-sl
And here is a video that shows the machine while I am dialyzing:
http://video.google.com/videoplay?docid=-1749639265679650272
Interesting while watching this video just now I note a higher than normal effluent pressure (which, in simplest terms, is like the TMP on a standard machine). After shooting the video I did a filter flush a process used to evaluate the artificial kidney‘s level of clottedness, it looked okay. With 15 minutes left in my run the machine gave me the first of many Red 38 alarms. I worked my way through them and rinsed back normally. After treatment on close inspection it did look like the artificial kidney’s head was a bit more clotted than normal. I’ll have to go back and read the Red 38 thread I ignored the first time around.
Great trip. I will be uploading photos to flikr and a travelogue to my global dialysis blog. Didn’t know I had a global dialysis blog? Go to the global dialysis blog page here http://www.globaldialysis.com/blog/index.asp and click on my name from the list of bloggers and you can read about my past travels when I had to - horrors - schedule incenter runs.
Bill;
Congratulations on a successfull trip. I hope you enjoyed yourself and cairney enjoyed(her?) self too. My first trip is coming in a week. Just a couple of days in Oregon, but it has been some time since the last trip. Know anyone with a 32ft RV that wants to let go of it for next to nothing? Just kidding/ well not totally. If we had a RV we would be off on the road for awhile. Probably head to arkansas to visit the famdamily for Halloweeney and stay around tor turkey day too. Then maybe I would get my two weeks in the woods of Mount Ida, Arkansas. Even maybe could go to eureka springs for a week or two, even stop in my birth place of Hot springs. Dreaming now , but it never hurts to dream does it… You are a inspiration to many of us. Thank you for sharing your life with us here in cyberland…
LSB
Bill, now that you have expererienced both the aksys PHD and NxStage what is your opinion of the two machines as far as the quality of the txs and the rate of technical prblems? Do you feel better on and off tx on one machine or the other or the same?