Living Your Life While Being Kept Alive
A Traveler’s Tale of Dialysis Abroad
Part 1 | How It Started
I've always been interested in random happenstance.
Instances where, because something happened at one point in time, another thing has shifted based off of that singular event.
I think I may always wonder what the happenstance was that led us to where we are now.
When a lot of people talk with us or even read along about our experiences being holiday home owners abroad, they get to hear all about the fun adventures that we've taken on this journey. What a lot of people don't know, though, is that our story the past year has had a lot of scary and completely unexpected bumps along the way. The cameras from the reality show that was filmed literally caught the last care free moments we would have for a very long time.
Two days before leaving France last summer, Andy started to feel a little nauseous. We still had two days of filming left of the show, however, so he soldiered on and kept a smile on his face, all while feeling a bit off.
Andy has always been a nervous flyer. For someone who loves to travel and travels so often for work, I'm always surprised at how upset he gets even days before flying and on the flight itself.
"Has the captain given a weather update?" Andy always nervously asks the stewardesses in the doorway as we board. Most of the time, despite the ever growing line behind him, they will take the time to quell his fears and then continually check on him when they make their rounds throughout the flight. So, when he was complaining about his stomach with the flight home looming in the background of our last few days, we both just chalked it up to anxiety for the plane ride, which was the norm.
We had booked our return flight to arrive home just days before I was set to start the new school year, staying abroad to the very last minute and soaking in as much sun as we possibly could. With Pittsburgh continually swapping places with Seattle for the cloudiest city in the U.S., we weren't in any rush to return.
When we arrived home, my re-entry shock hit hard, but was put on the back burner by the simple tasks of daily life; grocery shopping, doing the laundry, cleaning a house that had just sat vacant for months, and all the other little things to feel normal before the first day of school.
I'm not sure if other part-time expats experience re-entry shock as well, but mine usually hits for a solid month. Despite spending most of the year here in Pittsburgh, I have a deep feeling of not being home and missing my village house. I also experience the sense of not quite feeling as though I am where I am supposed to be (if that makes sense at all). It very much feels like my life is in France, and I'm just working and staying here in Pittsburgh until I can get back to it. All-in-all, it's a rough place to be for 9 months of the year; just waiting to pick life back up where you left it almost a year ago. On the flip side, when I re-enter France, I'm usually disoriented by only being surrounded by French at first, but after a few days it dissipates.
On the third day of being home, Andy was still having sharp stomach pains. "Why don't you head to Med Express," I begged him, trying to put the issue to rest and continue on with our acclimation back. "It's probably just the food," he said, shrugging off my suggestion.
He wasn't wrong. Since being back we had been indulging in ALL of the terrible foods we had missed while we were away and couldn't get while abroad.
An American breakfast with all of the usual suspects; pancakes, french toast, bacon, hash browns, omelets, chicken and waffles and cinnamon rolls accompanied by, of course, lattes in any over-the-top flavor you could think of.
"They have blueberry muffin strudel latte!" I said, wide-eyed to Andy from across the table.
"You don't even like blueberry muffin strudel," he reminded me.
"I know, I think I was just overwhelmingly excited to see such a decadent option even available," I said, still ordering the latte when the server came by. It was delicious, by the way! Everything you'd want an overly sweet, pastry-esque latte to be.
But the bad food train didn't stop at breakfast. On day two their was the deliciously greasy platter of sandwiches from Primanti Brothers, Pittsburgh's signature sandwich filled with a vinegar-based coleslaw and fresh cut fries resting on top of different fillings. And of course we had the craving for anything fried with ranch dressing for dipping. (God, we are sounding like true Yinzers!) Fried pickles, fried mozzarella, fried pretzels, fried chicken wings, fried raviolis you name it, we indulged, often ordering so much, we would eat the leftovers for lunch the next day. So, yeah, maybe it was the food? What human could consume such garbage for days on end and not feel terrible?
For the record, we don't normally eat like that. Fellow expats, back me up. When you return home, do you find yourself eating things you normally wouldn't just because you couldn't abroad? Let me know in the comments below, I am truly interested.
When it comes to doctor or hospital visits, Andy isn't someone who voluntarily goes when not feeling well. When he was younger, he spent most of his childhood in and out of hospitals, prompting him to almost need to be wheeled in on a stretcher before going that route. Suffering from kidney disease, he had his first kidney transplant at the age of six. At that age, you're just starting to become old enough to understand the world around you, but young enough to perhaps not remember what life was like before you were "sick." I sometimes wonder if Andy only remembers being sick; does he remember what life was like before the transplants? At the age of 36, it's now been his life for so long, I don't think he does. Part of me thinks that is a blessing; that way, you can't miss what you can't remember.
A few more days went by and while he didn't feel worse, he surely didn't feel better. Because of his extended risk, being a kidney transplant patient, his doctor urged him see what was going on and scheduled him for the next available scan at the local hospital. "The next available scan isn't for a month," Andy informed me when I got home from my third day of school. "Glad this isn't anything dire or we'd be in real trouble," I said, heading into the kitchen to unload my lunch box before taking a much needed nap. My re-entry shock was affecting my sleep and I found myself awake at three in the morning, ready to start my day, not quite ready to give up my French internal clock. Part of me felt like, when I did reset to U.S. time, I'd be "officially" back home, which was something I was grappling with wanting to be.
The next morning, I was going through the motions of my fourth day back at school when Andy texted. "They somehow had a cancelation! I'm going for my scan right now!" I hit print on the copier and picked up my phone to reply just as the microwaved dinged that my tea was ready. "That's great!" I replied. "Maybe we can finally get to the bottom of this. Keep me posted," I said as Freida Khalo's face started to appear one after another from the copier.
The silly memes you see about teachers juggling multiple tasks during their limited time in-between classes are very true. There are more times than I'd like to admit where I've had to decided if I needed to make copies more than I had to pee.
The day just seemed to be like any other normal day. Except it wasn't. At the time, we didn't really know how big of a role happenstance played in Andy's overall health until later that day.
When Andy and I started dating, I never really considered Andy "unhealthy" or "sick" despite never dating anyone prior that had any serious medical issues. I knew at some point we'd cross that bridge where he would need another kidney, and understood that since he had already had three transplants before, he would eventually get one and have a few months of recovery. In the grand scheme of things, life would then move on.
On a daily basis, life didn't change much dating someone with his condition. He wasn't allowed to get into hot tubs, for the fear of it hurting the kidney, and he wasn't allowed to do contact sports which, if you know Andy, wasn't something he was getting into much of anyways, being an artsy kid from Buffalo. So when he told me he was heading to the hospital for the scan, I didn't think too much of it. I told him to keep me updated and clicked off my phone in order to quickly get to my next class.
My day was just drawing to a close when my phone pinged under a mountain of worksheets and papers. Digging around, I finally unearthed it and saw I had received a message from Andy. "They see a small blockage in my colon. Ever hear of telescoping? That is what my doctor said she thought it was once she looked at the scan. They are suggesting a colonoscopy to unravel it. I have to go to the ER right now, though, in order to avoid making an appointment and having to wait. Should be home for dinner."
I quickly googled what a telescoping colon was. Ok, so the colon, being so long, accidentally slid into itself, making the space not as wide as it used to be and causing things trying to move through to become blocked.
That didn't seem too crazy. He'd get his colon unblocked, come home and have some dinner and then cuddle up to watch some Below Deck (a guilty pleasure), just like any other weekday night.
I folded up my lap top and grabbed my keys. I can find the top of my desk tomorrow, I thought, drained from the day and lack of sleep. On the way to my car, I mapped my route to the hospital.
Knowing how much hospitals freaked Andy out, I thought it might be nice to go and sit with him until things got started. Perhaps I could lull him into boredom by recounting my very long day with the kids. The first week of school was almost as bad as the last week. The kids were tired and restless. It was still beautiful outside and they were stuck seated indoors for eight hours, so it was hard to blame them. As I drove, I thought about the circumstances. I wasn't exactly nervous, I just wanted him to feel supported. I knew that, even with the news he was given, which wasn't technically bad, he was probably still freaking out.
"This is so crazy," Andy said when I finally made it to his bedside. "I just was going to go to get a scan, this really snowballed."
"Yes, but it's good to get this taken care of," I said, setting down my purse and getting comfortable. I scotched the chair closer to his bed. "Let's get this colon unraveled so we can get back to settling in," I said, rubbing his arm.
His doctors came in to explain the procedure and go over any of his allergies and compare the drugs being used to his current kidney medication, omitting any that would cause an adverse effect. "Ok, this shouldn't be long," the doctor said, turning to me. "Forty-five minutes at most I'd say. You can wait here if you'd like." I nodded, squeezing Andy's hand a reassuring "good luck!" as he was wheeled away.
I pulled my laptop out of my bag and before I could finish even half of my grading, nurses were wheeling Andy back into the room next to me. "He just needs some time to come down from the anesthesia they gave him," one said, locking his bed into place. I nodded as they swiftly exited with no other explanations, no doubt heading to another patient in the brimming hospital wing. The doctor came in with his head buried in a plethora of charts, seemingly distracted by the material.
"How did it go?" I asked, trying to break the unnerving silence. He looked up, unaware I had been waiting for him to notice me still there.
"We found something," he said, his eyes not leaving the papers.
"What did you find?" I asked, silence stretching and filling the space. He studied the papers a bit longer. My breath caught in my throat with anticipation.
"A mass, could be a benign tumor, we aren't sure," he finally looked up at me.
"So, what does it mean?" I asked, grasping at the limited information, but wanting more.
In life, I had been pretty fortunate that my immediate family or friends didn't find themselves in the hospital all that often. I was someone who needed him to really spell things out for me, blissfully unaware of the kind of news he was about to deliver. "It means that we have scheduled him for the first surgery of tomorrow. We need to remove it. Once we do, we will know more," he replied.
Andy started coming to a little in the bed next to us. He wasn't kidding, this day really did snowball! A lot of different thoughts floated through my mind during these few moments between Andy coming to and still not being 100% with it.
It could be a tumor... or something else? I hadn't even been at school for a whole full week. How could I take off already? What about the dogs? I should call his dad to come down and stay with us so I had a little extra support.
The doctor stood over Andy and shook his arm a little. "Andy. Andy wake up."
Andy fluttered his eyes groggily.
"Is it over?" He asked.
"Yes," the doctor started.
"How did it go? Did you unravel my colon?"
"It didn't need unraveled. It wasn't telescoped. What was blocking everything was a mass," the doctor explained.
"A mass?" Andy asked, beginning to sit up, eyes still fluttering.
"Yes, we'll take you into surgery tomorrow morning to remove it and then decide from there what to do next. For now you need to just get some rest," he said as he stood in the doorway, "You're really lucky you got that scan today. If you hadn't it probably would have perforated in the next day or two, and instead of removing it, we would have been fighting to save your life."
More silence filled the room.
"I will see you tomorrow," he said, breaking the silence, and then he was gone. I don't think we realized until that point how serious this situation was. That moment was the turning point for everything. We'd later find out that if he hadn't had that scan when he did, he may have lost his life as the doctor aforementioned, but if he happened to survive, he would have a catheter for the rest of his life.
The room was filled with a level of intensity I'd never felt before. I never considered what life would be like, or even could be like without Andy. The fact that I was days away from potentially experiencing that made me sick.
Andy turned to me, nervously, breaking the thick silence.
"What do you think it is?" He asked, some panic sweeping his face.
"Oh goodness, probably just a benign tumor... you're thirty-six!" My mind was going a million miles a minute, but the last thing I needed to do was fall down the rabbit hole of what ifs with him. I had to stay optimistic and positive. Andy was someone who could easily turn pessimistic and I needed to counterbalance those kind of thoughts.
In that moment, everything was on me, so while I was focused on his health and his upcoming surgery, I knew I had to go home to let the dogs out and feed them dinner. I also had to go home and create an impromptu lesson plan for all of my classes for the next day... and maybe more? Had I eaten today? I wasn't even sure. It was hard to focus on something so serious with the limited amount of sleep I'd had recently. At that moment, Andy's dad texted back.
I'll be there in four hours.
The trip from Buffalo to Pittsburgh was short, but in instances like these, it felt so much longer than it was.
"I'm so lucky there was a cancelation today," Andy said, jolting me out of my thoughts. I nodded, silently wondering what were the happenstances that led to that cancelation? Did someone have to travel for work unexpectedly and have to reschedule their appointment? What exactly happened that led to that spot serendipitously being open and, in turn, essentially saving Andy's life?
I know the story is a little heavier this week than it usually is, but it circles around to eventually show us navigating the French health care system this past summer. My goal in sharing this part of our experience was not only to show a different side of us (we aren't just baguettes and brocantes) but also to hopefully give some people the information and courage to not let medical situations define your life. There are ways to essentially live while being kept alive. Your diagnosis doesn't have to limit or stop you from doing what you love, in our case, travel.
If you have a similar experience where you navigated the French healthcare system please share it below and help others by sharing your info.
If you are more inspired by the food talked about above (as you know I always am!) please tell me all about the foods you miss from the U.S. when you're in France (I know a lot of you are full-time expats) or what foods do you indulge in when you're home?
And lastly, does anyone else have severe re-entry shock? Does it last long? Tell me all about it below.
Stay healthy! - R