I haven’t stayed overnight in a hospital in over twelve years. Pre-transplant, I was all too comfortable in hospitals. The new nurse would enter my room at the start of her shift, and encounter a poker game between Neel, Dan, Mak and me. Often, Bear was there in the hospital with me. I had the full mission control set up, complete with laptop, DVD player (pre-Netflix streaming era, people), iPod, Kindle, and cell phone (not smart or mobile at that point). John and Kathy, living in California, made two visits in a year – my first day of diagnosis and a visit post transplant, in addition to being my caretakers while traveling back and forth to California.
Some of the most memorable moments of my life happened in the hospital that year. A visit from an ex-girlfriend while 1 gram of steroids played havoc with my emotions. A doctor in the E.R. hearing that my nephrologist had dropped by steroid dose dramatically mumbling “idiot” and shaking his head (time to get a new nephrologist). My friend Kiyon holding on to me as I broke down at the news that the second attempt at a transplant would be scrapped due to a poorly drawn blood test.
Post transplant, I had a nine-day stay to recover and get used to the rabbit hormone that was conditioning my immune system to not reject the miraculous gift from my cousin. A few months later I contracted CMV and collapsed in a room in my GP’s practice, leading to another four days in hospital to diagnose me.
Since that point, other than a few outpatient visits for infusions, removal of the stitching for my transplant, or the joy of a good, deep colonoscopy, I have not been the patient. And never overnight.
A Betrayal of Lungs
I’ve had pneumonia twice before. Once when I was 11, where the Yugoslavian doctor prescribed “whiskey” and didn’t understand my mother’s response of “teetotaler”. Another in the post-steroid withdrawals of my kidney disease.
On a weekend in March, I landed on Sunday, and Monday morning I was a complete wreck. Over the past 13 years I have a pretty steady pattern of sinus infections. Starts in the sinus, eventually goes into the lungs. This was different – right away my lungs were laboring, and I was coughing up all kinds of wonderment. A visit to the doctor, a few mild antibiotics (Australian doctors constantly under-prescribe meds for a transplant patient, US doctors tend to overdo it), and two days later things were only worse. A second visit and the doctor dispatched me to the Royal North Shore E.R.
Royal North Shore
My nephrologist is world-class, so being in the hospital where she practices was critical to me. The local Manly hospital is probably good for simple things but I’d still steer clear.
The E.R. at Royal North Shore was stunningly great. The admit procedure was top-notch, and as soon as they heard the word “transplant” everything changed. They put a mask on me, got me into a private space, and went to work
I did find out that I am allergic to an anti-biotic Keftrex, which caused me to gag and instantly refund the chicken Moo Burger I had just polished off. I chuckled when the nurse suggested the way to verify that I was allergic was to give me another dose. My friend Jill, a former ICU nurse, who had come to make sure they took good care of me, suggested that wasn’t such a great idea.
Eventually they admitted me to stay overnight, so my nephrologist could see me the next day
A hospital stay is usually (and hopefully should be) quite boring. I paced the halls, usually sitting in a chair outside my room to look at the Sydney skyline. I don’t wear the gown unless I am repeated threatened by the nursing staff, and only if the consequences are clear and dire (any mention of “catheter” as an “or else” and I’ll suit up).
I wore it better
What passes for nutrition
Actually a really good poster board on kidneys.
After the first night they moved me from a private room to a shared room with four other people, which I thought was the point of private insurance, but I realized when you’re admitted to the public hospital (the only one with an E.R) you don’t get a choice. All good, the other person was a lot less healthy. My ‘roomies’ were four men older than 60, one who liked the TV at full blast, another who seemed to sleep all day, and another who seemed generally spaced out.
The TV loving bloke was berating a nurse about wanting to eat certain foods, that he was not supposed to eat. His accent was Eastern European and he has a tad abusive. I immediately judged him. I’ve been trying to meditate more, and sessions in the hospital definitely helped. Empathy has always been a challenge for me when I’m around conflict. The entire day I was in that room, I didn’t talk at all to the other occupants.
As I left the TV lover said “good luck!” That small amount of humanity made me realize that there I was, in the best health of anyone else in the room, and I hadn’t done a damn thing to make the lives of the people around me better.
Was that a deadlift, or just cleaned by a jerk?
After reading every OH&S (Operational Health & Safety) poster on ward 7B, I was familiar with all the proper ways to lift someone from one bed to the next, from the floor to the bed, from a skateboard to a salad bar, and every possible combination. Don’t be a hero, always have two people for a lift, never make eye contact with a badger, etc.
I exited the airport and shuffled along the sidewalk, waiting for a friend to pick me up. I was happy to escape the hospital, but felt like I’d just staggered out of the losing end of a prize-fight. A few moments later, I heard “Can you help me?” coming from the brush.
I looked around, and saw a rather large woman who had fallen out of her wheelchair and into the shrubbery. She explained she had left her hospital room to smoke (winner), and had tried to roll down the steep sidewalk (basically a hill) and gotten thrown out of the chair. Sigh.
So, of course I did the right thing, which is to pick her up all by myself and drop her in her chair. It took every ounce of strength I had left in me, with lungs still being attacked by pneumonia. I’m lucky I didn’t drop her and have to watch her roll down the hospital driveway, and spend the next two years in court explaining why I thought this was a good idea.
Once in the chair, she exclaimed,”You’re strong! I’m 80 kg”. Maybe holding thirty helium balloons you are.
Yes, I hit the trifecta. Generous, judgmental, and decision-impaired.
Pick someone for comms
One the one hand, it’s really nice to have a lot of people care about you. On the other hand, especially when texts, Facebook, and other media are so easy, you can get a bit annoyed when word spreads you’re in hospital.
“Keep me updated” is not something you should ask someone who is sick, unless you are their primary care giver. A sick person needs to focus on getting well, not updating everyone in the world on their condition. “Let me know if I can help” is awesome.
I think when you don’t have a partner, people forget – if you had a partner, they would just contact your partner. When you don’t have a partner, they just overwhelm you.
Sending someone a message telling them you care – awesome. Sending someone a message asking them to do something, not awesome.
Two months later, I’m still not 100%. I’ve been sick twice since being hospitalized with my usual respiratory infection.
I spent a weekend at the Australian Institute of Sport, and their Chief Medical Officer showed a graph, with “Number of international flights” on the x-axis, and % chance of infection on the y-axis. The chart stopped at x=4, and y was 99%. And that’s with a normal immune system. In May, I’ve had five international trips (Oz->Spain, Spain->Poland, Poland->Oz, Oz-US, US->Oz) totaling 97 hours of travel time (airports + flight time).
The World Transplant Games are just three weeks away, and while I wish I was focused on training, I’m just trying to get healthy enough to get a few practices in before I get on my next flight.
My next option is to consider sinus surgery. While I hate the thought of surgery, I feel like I’ve tried every other option and one have one left.
The bigger picture
It sounds bizarre, but I’m lucky to have these problems. When I was being treated for chronic kidney failure, I took 20 pills a day and felt horrible. For the last 13 years I’ve felt great. When I was on dialysis, every night was a small battle. Now every night is untethered, not painful, and optimistic.
A similar perspective: Recently I’ve had to start wearing glasses again, mostly only at night, for seeing long distances. I could be upset about that, and dwell on this, but mostly I’m amazed that I had 13 years post-intralase where I didn’t have to correct my vision, and I can still function near 100% without glasses except at night. That’s amazing.
So despite all the trauma of the last 13 years and the last three months, I’m actually a lucky guy when you look at the big picture, when you look at the health care I’ve had available to me, when you look at the people who care about me, and when you look at the life I live. Now I just need to make the most of it, and stay away from hospitals.