There was that moment of dread when I felt all alone in a hotel room on the east coast of the United States with a pair of lungs filled with fluid, seven hours away from my badly need dialysis appointment. Sleep was supposed to be my cure, and I couldn’t believe how badly it had failed me. I flirted with the idea of going to the emergency room to get oxygen, because it seemed there wasn’t enough inside my room. I couldn’t fall asleep lest I drown in my own fluid. Those seven hours in San Diego I’ll never forget.
Travelling is a big ordeal for me now, because I can’t go more than three to four days without dialysis. However, treatment centres around the world have established systems for visiting patients so with some tedious and costly pre planning travel is workable. I had two recent trips: to San Diego for a business meeting and Jamaica for a wedding, and they couldn’t have been any more different.
Let’s begin with the fact that dialysis patients have to watch their fluid intake, which I’ve explained before. It has to do with not being able to pee. When overloaded with fluid, some patients swell up around their ankles and legs or their stomachs or faces: Me, not so much. I suffer from another symptom; my lungs get saturated with fluid making it difficult to breathe. When this happens it is impossible to lie down. Before I went to San Diego it had happened to me once before (that story equally as dramatic).
How it went down in Jamaica
In Jamaica, I headed to the dialysis unit to locate the facility and weigh myself. It was a small private clinic. My official appointment was the next morning but I already had concerns my wedding activities were setting me up for fluid overload.
There were many elderly patients in the waiting room that afternoon. One of them, I gather, had a bowl condition and was waiting on a nurse to assist; the scent was foul. I thought about having to wait there for hours and had to hold back the sense of, why me. Everyone else was the on the beach, by the pool, or chilling with family and friends in some villa. Here I was.
It was a fleeting sentiment. I had my head together. As it turned out, my time at the facility was very smooth. They were prepared for my visit (all the tests and paperwork we had to submit actually served a purpose) and the nurses were professional and comforting.
I went for my two treatments at 6am, the morning of the wedding and two days after. I snuck out in the early morning when everyone else was still fast asleep. On Saturday morning, a late night at a strip club (don’t ask me how we ended up there), meant I barely had any real sleep, which worked out in my favour because I slept like a log on the dialysis machine.
So Jamaica went down like a charm. San Diego, no so much.
What happened in San Diego?
It was about 9 pm. I headed to my room immediately after the all day workshop ended. No time for follow up questions. No time to network. Jetlag was still weighing heavily on me and I was exhausted. My body was heavy, my eyes droopy and my spirit drained. Usually, it takes me nanoseconds to fall asleep under such conditions.
Maybe an hour had passed and I was still awake, aware of my heavily laboured breath. A few shallow breaths would be followed by coughs and a need to gasp for air. The constant coughing and fidgeting at first was just annoying. Every few minutes I was changing position and pulling at the sheets. I tried rolling onto the floor, propping against the low lying bed. I just wanted a comfortable position to slip into a dream, but the coughing and the hyperventilation were no match. If felt like there wasn’t enough oxygen inside my room.
I got up to adjust the temperature of the air condition and realised I was also weak and unsteady. I had to brace myself against the wall when I stood up because my legs were mush and my mind dizzy. Then there was that moment of dread when I realised what was going on. I was all alone in a hotel room on the east coast of the United States with a pair of lungs overloaded with fluid, seven hours away from my badly need dialysis appointment. Between breakfast, lunch and dinner with the group, along with a full day of work, I had been unconsciously binging on tea, water and cranberry juice all day. Of course, the anxiety only made breathing more difficult.
I sat there panicked wondering what to do. It was about 1 am back home but I decided to wake up a nurse. I needed someone, a credible person, who could convince me I was okay, tell me not to panic and help me to breathe. As I explained the situation I continued to hyperventilate, even more so now that I was feeling slightly ashamed and burdensome.
The nurse’s advice: “Don’t try to fall asleep. It will be too uncomfortable to lie down. Wait it out, because you just need dialysis. Once you get on the machine and they start drawing out the fluid, you will fall asleep. Don’t panic. If you go there panicked they might be afraid to dialyse you and send you to the emergency room. You will be okay.”
The emergency room suddenly felt like a terrifying place to be. The possibility of being refused treatment was equally as dreadful, so I endeavoured to follow the nurse’s advice.
On the floor, in the corner of the hotel room, I stacked up the four fluffy hotel pillows to prop my body upright. I tore off the comforter from the bed and draped it around me. I set up my laptop on the floor and settled in for a movie marathon.
By the time the action picked up in San Andreas and my eyes had been consoled by the body of Dwayne “The Rock” Johnson, my anxiety had eased. After San Andreas I moved on to a childhood favourite, Aladdin and the Prince of Thieves. Eventually time rolled by and it was 4 am: time to call the taxi and head to my 5 am appointment.
Still weak, unsteady, drunk with sleep and overloaded with fluid, I called the hotel front desk to order a taxi and a wheelchair. Hearing myself ask for a wheelchair yucked up all my anxiety again and brought down the tears. What a state I was in. And to imagine, in another five hours I was supposed to be back at the workshop for a 9 am start, rearing to go for another full day of intense strategy work.
They wheeled me off from my room to the taxi, thinking that would be the end of the drama. But my night provided proof to the saying, things can always get worse.
I showed the taxi driver the address on my phone. He tentatively pulled into the parking lot at the destination. It was about 4.50 am. The lights were out. The facility appeared closed. But the sign said dialysis centre, so we both assumed it was the correct place. A guy who looked like a real jonser stood in the parking lot under a faint street light. I reluctantly asked him when they opened and he said 5.30 am.
I thought how the hell they can open at 5.30 am when I have a 5 am appointment. But what the hell was I going to do but suck it up and wait? At 5.30 am when the facility started to stir I paid the taxi an arm and a leg and made my way inside.
The dozen or so patients that now filled up the waiting room watched me sitting there self-consciously. When a nurse emerged from behind the treatment door I rushed to her, identifying myself as the visiting patient with the 5 am appointment. She went to investigate and returned saying, did I make an appointment, because they did not see any notes there and had no free chairs. In that moment I felt so alone, so overwhelmed and so pissed. What the fuck?
Turns out there were two dialysis centres on the block and I was at the wrong one. So now, I was at the wrong place, already 30 minutes late for my real appointment and without a ride. The other centre was apparently down the road, around the corner and then down another road. The taxi driver who dropped me was already on another job.
Outside there was a bus, which brought patients to the facility where I was. I dragged myself outside and stood sheepishly at the towering white van, staring up at the driver. I gave him a literal sob story, begging for a ride down the road, around the corner to the other dialysis unit. This asshole listened attentively to my entire story and then proceeded to tell me, it was against policy to take on riders so he could not help. He had ample opportunity to stop me as I grovelled at his door to say, listen lady, I can’t help. But no, he listened to my entire story; he let me plead for help through my tears before shrugging me off.
So I dragged myself back inside the waiting room to figure out my next move. This time the patients watched me sitting there distraught.
I decided to walk, notwithstanding the fact that minutes before I was in a wheelchair.
Back outside I cut my eye at the van driver (I don’t think he saw me, but I cursed him with my indignation). At the street I stared left and right at the emptiness. Not even the birds had stirred as yet. The faint glow of the street lights only provided patches of illumination. But mostly I could only see dark, empty roads to somewhere that felt like nowhere. The lady inside said to go left and then left again and then walk down and I would see the sign.
I made my way left. Even if I wanted to rush I couldn’t. The weight of my fatigue and dizziness would not allow. At the first intersection I turned left again: Tentatively, because once again I could only see a dark, empty road to nowhere. At the end of the road there were several buildings, but no people and no signs. I chose the building on the left. The door buzzer had no instructions. Back down the stairs I headed over to the building across the road. The front door was open and inside the deserted lobby there was a sign on the wall that said Davita Dialysis.
I had finally arrived at the right place: Late but present; completely exacerbated but 100% relieved.
After my mostly uneventful four hour treatment I taxied my way back to the hotel and after a quick shower headed straight back downstairs for the all day workshop: The other participants being completely unaware of my crazy San Diego night.