R V ing with kidney dialysis

[keith gardner]

🙂It looks like in the near future my wife will be going on kidney dialysis.   We still want to enjoy our travel in our R V.  We are trying to find other seniors in the same fix.  WE will be doing the portable dialysis in the motorhome.  It looks like we will have to move up to a used Class A and get rid of our Jayco superC.. we were wondering if any one on this site is doing this?  on the portable unit she will have to do the treatment 7 nights a week, but we can go anywhere we want, where the office treatment is only 3 times  a week, but the places we go do not have treatment centers close and scheduling is not always an option  Questions we have?

problem getting supplies

type of portable unit you are using

how do you have the unit set up in the motorhome

Any information you have will be of great help.......thanks again    Keith

 

 

[Kirk W]

Welcome to the Escapee forums! We are happy to have you join us. 

While there have been many go on the road fulltime with medical issues, I can't recall knowing of anyone with dialysis. I did have an aunt who did peritoneal dialysis for many years and while not RVers, they did do quite a bit of traveling, carrying supplies with them. I don't know if that is an option, but might be something to consider. I hope that someone here can join in and would encourage you to continue in your investigation as there must be a way. 

[Ray,IN]

Having underwent kidney dialysis for only 11 times while hospitalized for a month, 3X week, 4 hrs. each session, and remembering how weak and exhausted I felt after each session(I was moved in a wheelchair); I would not attempt that today while traveling in an RV. The dialysis worked though my number went from 5 up to 1.4 and has remained there since.

I wish your wife and you well and success with your desire to travel by RV.

That said there is a very similar thread on a different RVing forum where one poster related his experiences. If I remember correctly he found treatment centers nearly everywhere via some website. I'll  try this weekend to find that older thread and send it to you by PM. I can't tomorrow I have a Nuclear stress test at hospital( 4 hrs) 

[Ray,IN]

21 hours ago, Ray,IN said:

Having underwent kidney dialysis for only 11 times while hospitalized for a month, 3X week, 4 hrs. each session, and remembering how weak and exhausted I felt after each session(I was moved in a wheelchair); I would not attempt that today while traveling in an RV. The dialysis worked though my number went from 5 up to 1.4 and has remained there since.

I wish your wife and you well and success with your desire to travel by RV.

That said there is a very similar thread on a different RVing forum where one poster related his experiences. If I remember correctly he found treatment centers nearly everywhere via some website.

 

Edited March 27, 2021 by Ray,IN

[Mr. Camper]

The NxStage System 1 machine is specifically designed for travel.  You should be speaking with your wife's nephrologist about your travel plans.  You will need a prescription for the supplies based on the frequency the prescription calls for.  However, first you will have to undergo training at a dialysis center and that could take about 6 weeks (more or less).  It's completely dependent on how quickly you, as her caregiver, and she learn the procedures, the machine, and the training nurse has the confidence in your ability to handle the process.  You'll also be given phone numbers for 24 hour help with either the NxStage system 1 machine or any other issue that may come up.  With the prescription you'll be able to have supplies sent ahead on your travels.  It will require planning and may even require stops along the way to pick up supplies as you travel.

Please don't let others who have not had any experience with dialysis, specifically in-center, scare you off.  By using HHD (Home Hemodialysis), you will have a much faster recovery time, especially doing it more frequently than you would on in-center dialysis.  Part of the training you will undergo will also be to determine the amount of time of each dialysis session and the actual frequency.  Six and seven days can be done and one thing you must remember with HHD is not to skip two consecutive days.

Your kidney-friendly meal plan will also change as well as her fluid intake doing HHD.  The nephrologist will be setting those limits for her and the paperwork you fill out during each session will need to be sent to the nephrologist and you'll be required to make the changes ordered as they come up.  These changes will require a scale, blood pressure monitor, and a way to transmit the data to the nephrologist.

If you are not full-time RVing then at home you can use the PureFlow system, but when you travel you'll have to pick up dialysate.

If you have pets they'll still be able to travel with you but you'll have to take steps to keep the lines and supplies free from any pet dander/hair and such.  Expect the "normal" routines you have pre-dialysis to change for the near future as you train on the machine and stay close until you develop your new "normal."

If your home dialysis center doesn't train in HHD you may have to travel or find an RV Park near the center that will train you.  Are you looking at Fresenius or DaVita centers?

If there is still time before this begins, look at a book called, HELP, I Need Dialysis! How to have a good future with kidney disease.  You can order it at the Medical Education Institute for about $6.00 at www.meiresearch.org/ 

Finally, there is a lot of information you can get from Fresenius and their patient advocate program by going to their website www.freneniuskidneycare.com

Best of luck to you.

[lappir]

There are many options, but those would have to come between you and the Nephrologist your wife is entrusting her care with and how he or she thinks it would work. 

It all sounds good, having a portable machine and all, but the bond and interaction between the patient and the dialysis specialist is paramount in getting the best care. Those bonds are way too difficult to form in just a visit or two, which would be the case if you want to travel very far. 

I am not or have never worked directly with a dialysis machine. Early in my nursing career I did care for a few patients with CAPD, which is one of your options. 

I hope you will be able to come to an informed decision, but this may not be the place to gather data unless there is a person on the  forum who is currently doing what you desire to do and they will reach out to you in a Private Message. 

Rod

 

 

[Theotur]

Hi - my wife was on at home peritoneal dialysis for 2.5 years.  This differs from hemo dialysis, but the end effect was the same.  She would hook up to the dialysis machine at 10:00 in the evening and the machine would run until approximately 8:00 in the morning.  The time on the machine is specific to each individual.  Her dialysis machine was about the size of an old electric typewriter and came with a soft sided travel bag.  I could carry it no problem but it was too heavy for my wife to carry.   We would bring along all of her supplies in the travel trailer for trips of 7-10 days.  We could also work with the dialysis center to have the supplies delivered to an address at our destination if we were planning a longer trip however we never utilized this service.  My wife always notified the dialysis center of our travel plans and they provided us with dialysis centers along the way and at our destination in the event we needed help with something or perhaps forgot some supplies.  This came in handy one trip when my wife did forgot something.  I also carried  a portable generator in case the power would go out at our campground so I could hook up her machine to the generator in an emergency.  Fortunately I never had to do this.  I liked traveling in our RV as I only had to load the supplies into the RV once versus carrying supplies in and out of a hotel room.  Our first trip with the RV and her dialysis machine was to a local campground 10-15 minutes from our home.  We figured if something happened we could go home with our vehicle and pick up the travel trailer the next day.  Everything went smoothly and gave us the confidence to venture out further and further from home.  Traveling with dialysis equipment and supplies is doable.  It takes some additional planning and also carrying extra supplies in the RV, but we appreciated the freedom and flexibility it gave us.  I hope this helps you.

[Kirk W]

5 minutes ago, Theotur said:

 I hope this helps you.

Welcome to the Escapee forums! And special thank you for sharing your experiences with those who are traveling with a need for dialysis.

[Winder119]

Hello folks, new here. My name is Randall, I came across this post while  researching the RV lifestyle and Dialysis. My partner has started paritoneal dialysis in the last few months. All things considered I think we should be able to make this work. We are currently using the “gravity method”… (thank you for your posts, it’s a new situation for us)

Anyway, we’re looking forward to the upcoming season (we’re in Canada) with all the new adventures and nice people that we'll meet, while managing our health.

TTYL

Randall

[lappir]

7 hours ago, Winder119 said:

Hello folks, new here. My name is Randall, I came across this post while  researching the RV lifestyle and Dialysis. My partner has started paritoneal dialysis in the last few months. All things considered I think we should be able to make this work. We are currently using the “gravity method”… (thank you for your posts, it’s a new situation for us)

Anyway, we’re looking forward to the upcoming season (we’re in Canada) with all the new adventures and nice people that we'll meet, while managing our health.

TTYL

Randall

The most important thing with the Peritoneal Dialysis is "Clean Technique". Wash, wash and wash again before preforming and every time you step away. 

Gravity was really the only method  I'm aware of if you are not doing "Hemodialysis". Infection is the problem with all dialysis with blocked or unusable tubes and shunts being the next issue. 

Good luck. 

Rod