Road Trip 3: Across the Country and Home Again

We are home in Chicago after having spent 2 months on the road. During that time, we were able to visit with various friends, immerse ourselves in nature and, of course, dialyze. The time away from home also provided us with time to reflect on our status as ESRD survivors.

In the previous post, we had made it to Tucson. We left Tucson on March 8th and headed north toward our next destination, Sedona, where we were to reunite with our friends with whom we had spent time in Mesilla. On the way north, we made a stop at the Phoenix Botanical Gardens to visit a memorial to my son’s partner’s father who had developed techniques to allow for the successful transplantation of desert plants. His breakthroughs allowed for the salvation of countless mature cacti which had been threatened by the expansion of human habitats. The wide variety of thriving cacti in the gardens were a testament to his contributions. While standing in front of a 20-foot Saguaro cactus fashioned out of old axe heads in his honor, I couldn’t help but think about transplantation of another sort. Just as the methods of transplantation developed by Phil Hebets helped to preserve the lives of native cacti facing extinction, transplantation of kidneys allowed for people threatened by extinction due to kidney disease to thrive.

I had been fortunate to have had 2 kidney transplants that provided me with 35 years of freedom from dialysis. Now that I was 2 years into a third stint on dialysis, my chances of getting a third transplant were minimal to non-existent. I am 100% sensitive. I would need a perfect match. Standing in that garden confirmed my belief that I couldn’t wait to receive another transplant to live my life, but I had to make the best of my reality. New developments in dialysis, such as miniaturization, now allow for smaller dialysis machines which make home-hemo and travel possible. This is what had allowed for me to hit the road again. I felt grateful for the breakthroughs that have continually improved the lives of countless kidney patients, just as transplantation of plant life has saved desert plants. These kinds of advances are truly remarkable and life-saving and new breakthroughs should be encouraged.

We left Phoenix and continued on to Sedona. We had to make one more stop, though, at Arco Santi, an experimental community that lay between Phoenix and Sedona. Developed by an Italian architect, Paulo Soleri in the early 1970s, it combines architecture and ecology. Volunteers continue to arrive there to help maintain the buildings and grounds. A brochure states,

“An ambitious project envisioned as an experiment in living frugally and with a limited environmental footprint, Arcosanti is an attempt at a prototype arcology, integrating the design of architecture with respect to ecology. Based on a set of four core values that include Frugality and Resourcefulness, Ecological Accountability, Experiential Learning, and Leaving a Limited Footprint.”

While access to the grounds and buildings was limited due to COVID, it was still exciting to see people trying to construct a community that is environmentally sustainable, aesthetically pleasing, and communally oriented. The environmental challenges we face as a species are similar to those challenges faced by individuals living with CKD. How we react to those challenges will determine how we live as individuals and as a species. It’s inspiring to see people seeking positive solutions to both dilemmas. This helps to motivate me to be involved in various projects that seek to make a more sustainable future. It helps me to move beyond just thinking about my own problems and to provide me with a purpose for living. We all need to feel like we have agency!

We finally arrived in Sedona in the evening of March 8th. As usual, we had to unpack the car of all of the equipment we brought along to keep me alive and awaited delivery of dialysate on the following day so I could dialyze. We received 27 boxes on the 9th of March as well as 2 boxes of cartridges and drain lines and warmer lines. Thirty boxes in all. This supply was to last for a little over 2 weeks and through our next two stops after Sedona. One issue that we had not accounted for prior to leaving is that 30 boxes take up a lot of space, and our AirBnB was a small home, maybe 700 square feet. Nonetheless, we made do. It did remind us to check out the size of future lodgings so that we are not so cramped.

Sedona is a majestic setting with towering red sandstone formations, valleys and flowing creeks. We spent 10 glorious days hiking various trails with our friends between dialysis sessions. As in our previous locations, dialysis went without a hitch. I dialyzed in the early morning or late evening, depending on activities planned for that day. We spent the days hiking with friends and then dining together outside. The trails were not overly crowded, and when we did run across other hikers, we donned our masks. While we were in Sedona, the Governor of Arizona, Doug Ducey declared that non-residents of Arizona could receive the COVID vaccine, since so many “snow-birds” moved to Arizona over the winter. Our friends let us know that vaccines were available in Flagstaff so we went on line and signed ourselves up for the shot. We received our first Moderna vaccine on March 10th.

We left Sedona after 10 days and headed for Palm Springs with enough dialysis supplies to get us through 5 days there and 2 in Los Angeles. I used to think of Palm Springs as a playground for Hollywood glitterati and retirees. I was sorely mistaken. The days of Hollywood stars hanging out are long gone and although there is a sizable retiree population there, the population is much more diverse than I had thought. The area around Palm Springs also offers a visitor a lot of options for recreating.

The mid-century modern architecture is abundant, so Ann and I along with our friends Danny and David toured the town on our bikes to see some of the more renowned examples of that style. We also road out to Indian canyons where we hiked through the mountainous desert trails, which end at oases with palm trees and running streams. It was a magical place and it became clear why people had settled here for centuries. We also took a day-trip to Joshua Tree National Park, which is also unique with its Joshua Trees, which look like something out of a Dr. Seuss story. Their spindly arms are topped by spiky appendages reaching for the sky. It’s like no other place in the world. We drove through the park and hiked several trails. The temperature hovered in the mid to low 80s, so we also took full advantage of the heated salt-water swimming pool in the small three unit hotel we stayed at. I was able to dialyze with a view of the courtyard and pool. One of the treats of traveling is that I was able to dialyze with some really beautiful views.

We made our way from Palm Springs to Los Angeles, where we stayed with our old friends Adam and Shelly. They had both been doubly vaccinated by then and since we had already received our first dose, we felt comfortable staying with them in their home. This was the first time we had been inside with other folks since March of 2020 when we all went into lockdown. It was an amazing feeling to be able to hug our friends and share a common space. Our time in LA was spent catching up with our friends whom we hadn’t seen in a couple of years.

We then made our way up to Monterey to visit with Ann’s 94-year-old mother and Ann’s brother Jem and his wife Beth. We stayed in a hotel there and were lucky to have gotten a first floor room, as we dreaded having to lug the dialysis and machine and supplies to the second floor. Always ask for a first floor room. Don’t forget to do so when on the road!

Ann’s mother is suffering from dementia and is rather frail. We had not been able to be in the same space with her for a year, so it was a joy to be able to hug her and spend time together even though we are not sure that she recognizes us. She seems to be aware that we care for her and so seemed comfortable to be with us. We never know when and if we will be able to spend time with her again, so we savor whatever moments we have together.

We also were able to take bike rides in and around Monterey enjoying the sea and sun. This was the first place we had stayed in a hotel so I dialyzed while lying in bed, given that there were no comfortable chairs to sit in. I had never dialyzed while in bed before, and found it extremely relaxing. Who knows, maybe this will become a new thing!

After several days in Monterey, we headed north to Oakland, where our 24-year-old daughter Sophia lives. We had been looking forward to spending lots of time with her to get a taste for how her life is unfolding. She had moved out west for college and ended up staying in the Bay Area, so we only get to see each other twice a year or so. We spent 12 glorious days in the Bay Area biking around during the days while Sophia worked and spending evenings with Sophie and her friends. We ate dinners together and explored the neighborhoods near her apartment. We were also able to visit with friends who live in the area. Because it was warm, most of the time spent with friends and family was outdoors.

While there, we also looked for a place to get a second vaccine, since several weeks had passed since our first doses. Our friend Donald, who lives in the Bay Area, helped us scour the internet for Moderna vaccines, since no Moderna vaccines seemed to be available in Oakland and the surrounding communities. He did find them in Gilroy, so we signed up and spent a day driving back south to get the second shot. We felt lucky to have received the second vaccine while on the road. We did experience side effects, although not too serious, on the day after getting the second vaccine. We were well taken care of by our daughter, who came over to our AirBnB with chicken soup and other goodies.

Because more people were getting vaccinated, various restaurants, bars and public institutions were beginning to open up. We spent a day in the San Francisco Museum of Modern Art checking out the various exhibits. It began to feel like normalcy was beginning to return. I dialyzed in between our various activities. We were also able to celebrate our daughter’s 24th birthday while there by going to an upscale Indian restaurant in San Francisco. Sophia, Henry (her partner), Ann, and I sat outdoors on the chilly San Francisco evening. This was the coldest we had felt on the trip so far, so because we were the only ones eating outside, we surrounded our table with outdoor heaters. The meal was well worth the chill. It was one of the few evenings where I allowed myself to splurge and forget my dietary restrictions.

We were saddened to leave but felt it necessary to get back on the road to Chicago after 12 days in Oakland. We drove to Salt Lake City on the first leg of the return trip. While there, we made a last-minute decision to drive down to Arches National Park while we were in the area. I still had enough pre-mixed dialysate with us to spend a couple of days in the park. We drove down to Moab on the next day, found a place to stay, and embarked on a trip through the park and our first hike shortly after arriving. It turned out to be 2 of the best days of the trip! Arches is a magnificent park with numerous beautiful trails. We took advantage of several of them in the short time we had, and dialyzed before the final stretch of driving. We decided to high tail it home to Chicago from there in 2 days, so I could get home to dialyze on the evening of the second night. We made it back on April 14th, 2 months after having hit the road.

While we had taken various shorter trips over the past 2 years while I was on dialysis, this was our first long trip away from the comforts of home. We were a little apprehensive before we left, with concerns about whether my dialysate would arrive on time at our various stops or we would run into any glitches with the cycler while away from home and doctors. What we found was that a person can navigate dialysis treatments very smoothly while traveling. The only issue we encountered along the way was in Monterey, where one of the boxes of dialysate contained two broken bags. I assume the person delivering them mishandled the box. I had accounted for possible mishaps when ordering supplies, so this turned out to be a minor issue. We still had enough dialysate left to allow the stop in Arches. Because we travelled together, loading and unloading the dialyzer and supplies was not much of a hassle. Having a partner is a must when traveling. Ann is a sensational partner! We’ve had lots of years on the road together on motorcycle, cars and other means of transportation, and have had to make numerous accommodations in the past, so adding a dialysis machine was not an issue.

I understand that travel may not be easy for everyone on dialysis. Some folks may not have a partner to help them along the way, others may not feel comfortable lugging a cycler for miles across the country. Perhaps there could be other solutions that would still allow for travel, such as having dialysis centers across the country maintain a “spare” cycler or two for patients to check out and use when they arrive in a new destination away from home. I am sure that new solutions to make it easier for people travel can be imagined. Nothing’s harder than inventing a machine that helps keep people alive.

I’ve been living with CKD for almost 40 years now, having had two transplants, and on my third go round with dialysis. In the previous two stints, home dialysis was not an option, so travel was somewhat limited. Home hemodialysis has dramatically changed our lives. We can decide how and when to dialyze. More importantly, we can pick up the machine and hit the road. It’s critically important for our mental and physical health that we don’t let ESRD keep us from living our lives to the fullest. It isn’t always easy, but what choice do we have?