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Old 01-10-2020, 10:58 PM   #1
I Think We're Lost!
 
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Peritoneal dialysis on the road...

Well: it seems that the chemotherapy has knocked-off the transplanted kidney, and the Missus is back on dialysis now...
We've been doing the training on how to perform dialysis at home, and hey're delivering a TON of stuff at the end of next week.,,
We have two trips planned for 2020.
A short trip to Lake George, and an eleven day trip down to WDW and back.
My question:
When travelling: do you prefer to use the manual method? Or is it easier to hook up to the cycler for overnight dialysis?
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Old 01-11-2020, 12:00 AM   #2
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Darn Bob. Iíve got no help for you but prayers for you and yours. All the best.
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Old 01-11-2020, 12:47 AM   #3
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Thanks...
I just wish that I didn't have to be asking...
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Old 01-11-2020, 12:50 AM   #4
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Same here Bob.
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Old 01-11-2020, 01:10 AM   #5
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Sure hope you get a good answer Bob, things go well with you and the missus and you get to see all the places you have planned.
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Old 01-11-2020, 01:24 AM   #6
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Sorry you are confronted with this. It adds so many levels of complications, but I do know that people on dialysis do travel. I have very marginal kidneys, but no dialysis, at least not now, hope I can continue to dodge that bullet. Seems your dialysis center should have some recommendations for you, as I'm sure they deal with this frequently. Also talk to your nephrologist, he or she should have some thoughts on what would work best for you. Of interest, the 'artificial' implantable kidney has, as I understand, gone through a level of animal testing with success. When that becomes available, it will revolutionize renal failure treatment, but that is probably some years out there, yet.
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Old 01-11-2020, 01:44 AM   #7
I Think We're Lost!
 
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Thanks for all of the encouragement. You guys really know how to lift my spirits.
We're not giving up on any of our plans.
Kathy's next treatment is on Monday. I see if I can talk her into asking them about the tactics for the trips.
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Old 01-11-2020, 02:04 AM   #8
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My former BIL traveled in his Class C using peritoneal dialysis. I was younger then and didn't pay attention to the details much but he didn't travel at all prior to peritoneal dialysis but after traveled a lot dragging his bass boat. Best wishes to you both.
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Old 01-12-2020, 03:10 AM   #9
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Quote:
Originally Posted by Bob Denman View Post
Well: it seems that the chemotherapy has knocked-off the transplanted kidney, and the Missus is back on dialysis now...
We've been doing the training on how to perform dialysis at home, and hey're delivering a TON of stuff at the end of next week.,,
We have two trips planned for 2020.
A short trip to Lake George, and an eleven day trip down to WDW and back.
My question:
When travelling: do you prefer to use the manual method? Or is it easier to hook up to the cycler for overnight dialysis?
You'll be in my prayers too, for what they're worth (I don't have much pull w/the Man above...). Y'all are an inspiration to many of us here & helped us meet what we thought of as our own difficult challenges. Not many people in this life, can claim to meet such challenges as yours, with the grace & good humor you have always shown on this forum. Thank you so much!
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Old 01-12-2020, 02:58 PM   #10
I Think We're Lost!
 
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Thanks...

I always thought that i did a better job of being the "Cautionary Tale"; than any sort of inspiration...
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Old 01-18-2020, 07:54 PM   #11
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I can’t reply as a dialysis patient, but I am a nurse practitioner who has worked in dialysis for years. Unless you’ve got a lot more room in your coach than I do and you’re absolutely sure you will have electricity every night while traveling, the manual method is more reliable. Once you’re parked, you could switch to the cycler and that would be reasonable then. It just wouldn’t work well for the travel part of your trip - especially in Walmart parking lots!
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Old 01-18-2020, 08:24 PM   #12
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Sadly I have some experience with peritoneal dialysis and sorry about your wife. It's a lot of work and the monthly deliveries are huge! Boxes and boxes of dialysate. I don't know how much room you have but I can't imagine bringing the machine with you. When we did get out in our 5th wheel, he did manual exchanges. Unfortunately that breaks up your day but it works. He had to do three exchanges a day. The machine allows nighttime exchanges while you try to sleep but I can't tell you how much sleep we lost to debugging bad drainage alarms. Darn fibrin kept blocking the lines. My husband couldn't get a kidney either, but I hope your wife can get back on the list when she recovers.
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Old 01-18-2020, 08:47 PM   #13
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She just got started on home dialysis, and they've got her on a "four per day" schedule....
It sounds as if the manual method might be the way to go.
The first delivery was 65 boxes!!
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Old 01-18-2020, 10:21 PM   #14
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On the road with PD Dialysis

Itís been a year since my wife had the PD catheter surgery. We are fortunate that itís worked well for her. Getting right to the question, yes we travel successfully with PD using a cycler overnight. We have a Baxter Amea system that is compact making things a little easier. As mentioned earlier weight and size of the dialysate is the limiting factor. Also we carry extra cassettes(they occasionally fail) and a couple of boxes of manual bags.
We started out with 500 mile or less trips from home. Last year our most ambitious trip was to Salida, Colorado (Great Sand Dunes NP) from our home on the Gulf Coast of Texas. My comfort level is really better staying within a hard days drive from home. As you will learn your PD nurse is your lifeline so we always let her know where we will be staying. You can have supplies shipped to destinations but we havenít tried that yet.
Get comfortable with home dialysis then plan taking it on the road with what you can comfortably handle in the RV. The added stress of potential problems with the RV shouldnít be taken lightly.
Good luck,
Hugh
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Old 01-19-2020, 12:28 AM   #15
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We have a camp ground 7 miles from us.
Before the travel season starts we go on a weekend shakedown trip.
If anything happens (it has) we're only a few minutes from home, ER etc.
After you decide which method works best take a 1 week "trip" to your shakedown location.

Are you a member of iRV2 or rvlife.net?
I did a google search for "dialysis in a RV", several interesting links and some YouTube hits.
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Old 01-19-2020, 01:31 AM   #16
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PD Cycler Works Great on the Road

Bob --
My husband and I travel in an Axis 24.1 -- and we have found that the Cycler works great in our travels when we hook up to shore power. If we don't have shore power, my husband does manual PD exchanges.

Last summer we made a four week trip out to Yellowstone from Michigan. We took along enough supplies for the first half of our trip. Fresenius, our PD supplier, arranged a delivery for us in West Yellowstone to deliver supplies for the last half of the trip. (A month's worth of supplies added to our normal "stuff" would have exceeded the weight capacity of the Axis.)

Best of luck to you and your wife and "Happy Travels!"
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Old 01-19-2020, 02:44 AM   #17
I Think We're Lost!
 
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When you use the cycles: how do you get rid of the vast amount of fluids?
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Old 01-19-2020, 04:24 AM   #18
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Her prescription uses 12 liters over night. I drain to the shower.
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Old 01-19-2020, 12:21 PM   #19
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Bob.... my prayers to you and Kathy..... while I don't know you personally I can tell you are one of the good guys just from your posts and you keep your spirits up with some funny posts. Plus you went out of your way to send me pics of your Spyder in your Outlaw when we were getting ready to buy our 29H for our Spyder.

I think there is always a solution to any problem and with feedback from this site and the doctors, you can find a way to keep chasing those dreams and time together.

I think the post about some test runs is very good advice.... even if you boondock overnight somewhere close to home. You can get back home easily and you can start to put your check-list together of the do's and don't and things you need to make sure you have on hand. The when you are ready for your trips some of the stress will be off and you can enjoy the time more.
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Old 01-19-2020, 01:51 PM   #20
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Sometimes we are challenged for a reason so perhaps god is trying you in his fiery furnace only to reward you later. Being the smart guy you are I know you will figure out and defeat this obstacle Bob. God bless you and your dear wife. You know Bob some of us see you like this picture.

Some thoughtful words:
One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
One belonging to me and one to my Lord.

After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.

This really troubled me, so I asked the Lord about it.
"Lord, you said once I decided to follow you,
You'd walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don't understand why, when I needed You the most, You would leave me."

He whispered, "My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you."
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