Traveling the U.S. with an RV and Home Hemodialysis

This blog post was made by Terry Clark on April 9, 2020.
Traveling the U.S. with an RV and Home Hemodialysis


My name is Terry Clark, and I have Polycystic kidney disease. When my kidneys first failed, I started peritoneal dialysis at home, and during this time my husband and I purchased a motorhome—a used Newmar Dutchstar. We went to the factory in Napanee, IN to see how they were made first, then we found the perfect one on RV Trader and felt it was the right one right away. We are big fans of old westerns, so we named our RV Tumbling Tumbleweed!

Right before we were to leave on our first trip, I had a second hernia and had to switch to in-center hemodialysis. My husband, Chet, said, "Guess we are not going anywhere," and I said "We sure are!" We traveled in our RV while I did in-center. On our first trip, we went to visit our son in Hendersonville, NC, stayed there for a while, then stayed a couple of weeks right outside of Savannah, GA, and after that we went to what has become one our very favorites—Ft Pickens National Seashore for another 2 weeks. After that, we headed to Las Cruces NM at the foot of the Organ Pipe Mountains and then to Tucson, AZ, which has become our winter spot.

While I was in center, I would call Fresenius Travel before we changed locations and let them know where I was going, and they set up dialysis centers for me. We always stayed at least 2 weeks in each place, and every third place we stayed for at least a month. This worked out well, and Fresenius was very easy to work with. I did this for 2 1/2 years. But, the last 6 months I started feeling weak and had to rest after dialysis—I didn’t have much energy any more.

While we were in Pensacola, FL, Chet and I were invited to a dinner by Nxstage. At the restaurant, we saw a motorhome next door with NxStage written all over it. We knocked on the door, were invited in—and met Harvey Wells. Harvey told us how he travels in his RV and does home hemodialysis. We all thought that I could do this, too.

When we arrived in Arizona for the winter, I inquired about home hemodialysis and within a month we started training. Just a week before, I went to Walmart right after a treatment and had to sit down in the produce department, because I felt extremely nauseated, which freaked out the workers! But, after our first training day, I felt amazing and had so much energy. This was very different than in-center, where I felt weak and had no energy.

One year later on home hemodialysis, I still feel awesome and have so much energy. Chet and I hike and go on long walks with our two black labs. We still travel in our RV all over the country and we enjoy meeting people and seeing beautiful places. We also visit family and friends all over the country. We use a NxStage machine and hanging bags—it would be hard to use a Pureflow and test water at every place we stop. We store our supplies in our bays in the “basement” of our RV and get deliveries every 2 weeks. In fact, we received a delivery this morning of 24 boxes of hanging bags. We had 10 boxes already in our bay. We also received 1 box of warming lines and 2 boxes of cartridges. Most times we received 21 boxes—19 of hanging bags, 1 of cartridges, and 1 of warmers bags. Every few months we get a box or two of drain lines, too.

Every month, I give an inventory of what we have to Nxstage and tell them where we are going to be for that month, and they set up deliveries. We stay at private campgrounds and county parks. If we stay at a place where we cannot get deliveries, I ask the center I’m going to if they can accept delivery for me and we go to center to pick them up.

Every place we go we tell everyone we meet about home hemodialysis and the freedom it gives you and how it makes you feel so alive with tons of energy. We even bring our RV to centers and invite patients inside to watch me do my dialysis. We plan to try that more so in-center patients can see that you can travel and live your life!! I also tell everyone I meet that I am very grateful to Nxstage—they have given me my life back.

I love to tell other dialysis patients about home hemodialysis and how wonderful it will make them feel and how much more freedom they will have when they can travel, too. By telling my story if, I can influence at least one dialysis patient to go home, it’s all worth it. I truly believe we must never give up and should enjoy each day and see the beauty everywhere!!!

Comments

  • Johnnie Carlisle

    Oct 21, 2024 10:29 PM

    Will start training for HHD on 10/28. I would like to eventually sell my home and buy an RV so I can live at the beach and maybe travel other places. I want to look at them but have no idea what size i should be considering. Do you have any suggestions? It's just me.
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  • Mike & Christine Krauss

    Apr 10, 2024 9:00 PM

    This is all good. My wife has been doing dialysis since 2010 which is when she was diagnosed with a rare kidney disease called Dens Deposit. She tried a transplant since they found a perfect match kidney, but it failed because the kidney she received had a stinosis of the renaal artery so it failed. They have not tried again for 14 years since they are now worried that her disease would kill any kidney she might receive. She started on peritoneal and after a couple years she developed Peritonitis which forced her to go to hemo-dialysis. She has a fistula and is able to insert her own button-hole needles. She has gotten very good at it. We have traveled with the cycler by air, by car and by RV and we have gotten pretty good at it. In the RV we have made arrangements with Fresenius to have supplies delivered to dialysis centers and they are always willing to work with us. When we fly or drive by car we arrange to have supplies ship to a location that can receive them that is near our destination. If you do this, make sure the supplies arrive at least a week before you travel to make sure they arrive and are ready (and have time to at least warm to room temperature before treatment). I am about to retire and we are buying a class A RV (40 ft). Since I know we can do bags if we need to, we can arrange to have them shipped where ever, but, I am contemplating options to making dialysate in the RV using the pure flow. I am evaluating if adding a 100 gallon potable water tank (would make ~2 weeks of dialysate for 8 treatments or 10.6 gal of water /treatment) to the RV. The tank would be dedicated to making dialysate. If I fill it from my home where we normally do dialysis and has worked for us for over 10 years, before we leave, I'm pretty confident we might be able to make it work. I'm looking for any feedback from anyone that may have also looked into this. Also considering a reverse osmosis system to add an extra level of filtration before filling the tank. I believe if we stay at a location for more than a week we might have time to send in a water sample to see if the water could be used to fill the tank again. We love traveling and hope to do a lot more in the next few years.
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  • Kelly M Dempsey

    May 24, 2023 2:03 AM

    I really.loved this story and gives me and my 17 old son hope. Last year I donated my kidney to him but it failed 3 weeks after and he is back on hemodialysis. Your story has made me super happy and I'd like to be able to do this one day too.. we live in New Zealand and I wanna be able to take my son to see Nz and also see family more regularly. Thank you so much for showing us this can be done. Kelly and Reign
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  • Pat OBrien

    Mar 24, 2022 10:14 PM

    We just bought a travel trailer to do HHD in while on the road. I was wondering if you use a generator to power the cycler and if so, what type (brand/model) do you use?.
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  • Gerald Lewis

    Feb 28, 2022 5:42 PM

    Hey Terry, Thank you for this post. I also have PKD and I have been on dialysis for about a year. I am 55 years old and my antigen levels are high, so although I have a live donor, my body would reject the kidney. They are having a difficult time finding me a cross match. The Cardiologist and Nephrologist continue to push home dialysis because they tell me it will preserve my heart. I don't think I can handle the tube in my stomach but I have been researching the button hole technique. Do you have the button holes? if so, are you comfortable putting the needles into your own arm? I truly appreciate your post. It was most encouraging.
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  • Elaine Blodgett

    Dec 05, 2021 10:51 PM

    Put on home hemodialysis for about a year and a half, going on two years for my husband Keith. We just bought our first fifth wheel and are planning on doing hemodialysis using hanging bags for a two week trip to Florida. I think at this point we worry more about what we might not know about the RV than what we know about Dialysis. Was it hard to get started with doing dialysis in the RV and things like how long a drain line did you need to get it into the sink? What do you use for a dialysis chair that it blows it to adjust in case of blood pressure being low? Any ideas would certainly help.
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    • Marsha

      Apr 10, 2023 7:27 PM

      Are you putting the waste liquid in the sink gray tank? How are you treating body waste in gray tank?
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  • steve erickson

    Sep 13, 2021 1:55 AM

    How can I contact Harvey Wells. Wife is on nxstage system one at home and we want to travel in motorhome. Want info on specifics of travel, like how is cycler stored/attached in rv. I cant pack it in hard case and lift it onto a countertop daily....
    Thanks
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  • HAROLD MAYO

    Jan 31, 2021 7:43 PM

    Honestly, this gives me hope for the next stage of my life. I am finding home ownership isn't for me and would like to travel the country, but after a recent infection and surgery, my kidney function has dropped to 20%. I hope I won't need dialysis for 2-3 more years, but if I do, I know now that I won't have to get off the road.
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  • david isabella

    Oct 13, 2020 6:49 PM

    My wife does home hemodialysis and we are looking to take a trip out east to Maryland in December. I could use some information from a knowledgable source as to what is entailed in dialyzing while RVing. Thank you. David
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  • EJ Tamez

    Sep 09, 2020 3:24 AM

    This is an awesome story Terry, I donated a kidney to my younger brother 3 years ago. Keep traveling!
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  • David

    Aug 24, 2020 12:58 AM

    Do you need to do dialysis at a facility that has hookups and electric?
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  • Harvey Wells

    Apr 17, 2020 5:30 PM

    Remember you guys well and Iโ€™m happy to see you living your life like you enjoy. If youโ€™re passing through Texas or traveling out east, let me know. Would enjoy visiting with you again.
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    • Terry Clark

      Jan 10, 2021 11:24 PM

      Harvey just saw this so sorry have not gotten back to you sooner. We owe so much to you for showing us that traveling on dialysis is possible. We would love to get together sometime and visit. We always go through Texas and we were just at Padre Island National Seashore a couple of months ago. We will definitely get in touch the next we are out that way. We are in Tucson AZ now and use this as our home base for the winter. Hope you and your family are well and thank you once again for giving us the encouragement to do Home Hemo in our Motorhome๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š
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  • Mandy Linborg

    Apr 09, 2020 10:58 PM

    Terry so glad you still get to live the life you love. You're one of the strong ones in our family.
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  • Teresa Dunn

    Apr 09, 2020 9:41 PM

    What a wonderful encouraging story. My husband and I just retired and seeing the USA in a comfortable trailer would be awesome. Enjoy being together and stay safe and healthy. I am endorsed by the NKF for my dialysis wear. www.medicalrehabwearinc.com if you have the need or can refer others. Teresa
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