From Purim to Pandemic to Pesach

The good news is I haven’t had any symptoms since Purim. The bad news is the world has gone to pieces since then!

It’s kind of funny because while everyone else is losing their minds, for me these restrictions and anxieties are just a mild escalation. Welcome to post-transplant life everyone! I’ve been scrubbing my hands and avoiding crowds and running away from anyone showing any signs of illness for almost a year now. And even before transplant I was cautious about germs, as any respiratory infection had the potential to be disastrous. Since I’ve already been on edge all cold and flu season, I initially felt relatively calm about the whole COVID-19 situation.

Then the shuls closed down. And the schools. Large gatherings were prohibited, then smaller gatherings. The list of closed businesses grew by the day, and an 8pm curfew was established. Places that previously were safe for me became off limits, as stores were swamped with crowds of panicked shoppers at all hours of the day. Then there were the regular emails from Penn Medicine with new restrictions: all non-urgent appointments and procedures postponed indefinitely, routine followups to be conducted virtually, no visitors allowed. I started feeling more anxious as my already small world kept getting smaller.

On Tuesday I went to Penn’s COVID-19 testing center for a drive-through test, even though I haven’t had any symptoms aside from a few hours of fever and feeling a little off for one day last week. We don’t actually think I have COVID-19, as we’d expect an immunosuppressed transplant recipient to have a far more significant response. But nothing else showed up on my viral swab to explain my symptoms, and now I’m due for another bronchoscopy. During a bronchoscopy the infection could become aerosolized and contaminate the room, making it impossible to adequately clean between patients. Due to this I need to be cleared of COVID-19 before I can schedule a bronchoscopy. We also need to make sure I don’t catch it post-test and pre-bronch, so I’m basically semi-quarantined now. And even after the bronch, my transplant team recommends that I pretty much stay home and avoid most in-person human contact now that cases are spreading more rapidly and becoming more prevalent.

Honestly, even that wouldn’t be the biggest deal except for one thing: Pesach. I’ve been feeling increasingly overwhelmed and anxious every time I think about it. I usually go out for yuntiff and Shabbos meals on Pesach, if I’m even home at all. The extent of my Pesach cooking before now has pretty much been limited to hard boiled eggs and matza pizza. I also have never been in this apartment for Pesach and don’t have anything prepared here, since last year I was in the hospital. But now for the first time I can’t rely on going out for ANY Pesach meals, and I don’t know if I’ll even be able to safely accept food prepared by others by then. Suddenly I need to determine and purchase all the utensils and cookware and kitchen accessories I’ll need for Pesach, plus get all the food to make both yuntiff and weekday meals, including a seder. And somehow I’m supposed to do all of this while unable to leave home! I don’t even know what I need or what’s available, how exactly am I supposed to make a shopping list for someone else? Just thinking about it is overwhelming!

Ironically, I spent all of last Pesach stuck in the hospital wishing desperately to be home. And now this Pesach I’ll be locked up inside my home wishing desperately that I could get out. G-d certainly has an interesting sense of humor!

The best laid plans...

Well, after making it through the Jewish calendar without incident over the last several months, I guess I was overdue for having a holiday get messed up.

A year ago, I was extremely ill and was admitted to the hospital on Purim. A couple weeks later I unexpectedly found myself being worked up for a lung transplant. I've been a little freaked out thinking about that, and eagerly anticipated having a MUCH better Purim this year.

My Purim plans were already small. Between cold and flu season and the Corona virus, my doctor strongly encouraged me to avoid crowds, particularly crowds in small enclosed spaces. So no shul or parties or big communal seuda for me. But I still made plans, and I was really looking forward to them! I spent hours making lung lollipops and cookies for my fancy lung-themed shalach manos, and was excited to show off my costume while delivering them. I've had my costume planned for a year, ever since they started my transplant workup. I OBVIOUSLY needed to be Frankenstein's monster now that I'm cobbled together with parts from multiple people! For seuda I was going to join an immunocompromised friend whose journey to bone marrow transplant last year closely paralleled my own journey to lung transplant. Since neither of us could go to any large seudas, we decided to make our own. My Purim celebrations would be slightly curtailed, but I would still have a nice holiday, and I was very excited for it.

Aaaand then I woke up feverish today.

Thankfully no other symptoms except a headache, fatigue, and a slight increase in coughing, but my doctor still wanted to see me and get testing done. So instead of delivering shalach manos and having a seuda, I got to rush to Philly for an appointment. My chest x-ray and bloodwork came back normal, but it'll take at least a day to get the results from the viral swab. If we identify a virus but my symptoms remain mild, I'll be able to treat it at home. If the viral panel comes back negative but I'm still running a fever, I'll have to go to the ER for a chest CT scan and a COVID-19 test so we can figure out what's causing my symptoms. And if my symptoms get significantly worse, I'll have to go inpatient for treatment.

On the plus side, I haven't had a fever for the last several hours, so hopefully it'll stay gone and this will have been a lot of fuss over nothing. But that's the reality of post-transplant life: any sign of infection is pounced on and treated aggressively, lest it turn into something worse. Here's hoping I can weather this one at home!

I did manage to catch a megilla reading at the Adlers (while wearing a mask, staying on the outskirts, and trying not to touch or breathe on anyone or anything) before rushing to Philly. I also got to see some people and enjoy the in-person reactions to my costume and shalach manos, and some of my wonderful friends delivered the rest of my shalach manos for me. And just for fun I wore my costume to my doctor's appointment, and enjoyed watching each member of my medical team do a double take as they walked in the door. I had already given them lung lollipops and cookies last week at a follow up appointment - which they greatly enjoyed!! - so they basically got the full Purim experience!

So that was my Purim. Not exactly what I had planned! But at least I managed to stay out of the hospital this year, and hopefully I'll continue to do so for the foreseeable future!

(If you want to see more of my shalach manos, I made a video of the whole cookie and lollipop making process: https://www.youtube.com/watch?v=29ARL9xdQ-4)

"Let THEM stay home!"

A friend posted a diatribe about those who say “If you are sick stay home,” and how they don’t account for the fact that MANY people don’t have the option to stay home if they want to pay their bills and keep their jobs. I definitely agree with that, and I think it’s terrible that our society prioritizes the employer’s bottom line over protecting the basic health, safety, and well-being of the masses. However, my friend ended by saying that the idea of a person staying home from work because they might be a risk to the elderly and immunocompromised was “preposterous,” and said “Let THEM stay home!” And with that flippant comment I was suddenly smacked in the face with how few people actually understand what it’s like to live with a significant health issue, and how very easy it is for society at large to consider me a disposable outsider.

I stay home. I stay home ALL THE TIME. In fact, my struggle is mustering up the courage to LEAVE home, and deciding how much risk to my physical health is worthwhile to protect my mental health and make life actually worth living. I spend SO MUCH mental energy worrying about infections and coming up with strategies to minimize my risk. I skip so many activities, avoid so many situations, due to living in fear for my health. Then, of course, there are all the times that I have no choice but to leave home for things like doctor’s appointments, or picking up prescriptions, or going food shopping. And I’m luckier than many others, who have to go to work, or who don’t have a car and have to take public transportation. But even if I never left my house, I still couldn’t avoid potential exposure to germs. I don’t exactly live in a hermetically sealed chamber here. Despite my best efforts, I could get sick and die at any time.

Then there are the times that I finally do make the decision to actually leave home for a change. First there’s all the worrying and evaluating and risk assessments that precede the decision. Then there’s all the anxiety that accompanies me during the outing, as I try to minimize my exposure and pay attention to the health of everyone around me, the cringing every time I hear someone cough, the wearing of masks and dousing myself in hand sanitizer. I’m a social person, I get joy and energy from being with friends and socializing with others. I NEED to get out into the world and be with others sometimes if I want to stay sane. But there’s a shadow over every social outing, anxiety every time I leave the house, constant second guessing whether I’m making the right decisions. I can never just relax and fully enjoy myself anymore. It is utterly exhausting.

“Let THEM stay home!” How easy to say when you AREN’T the one staying home! When you aren’t the one trapped inside the same four walls day after day, month after month, because what’s outside those walls may kill you. Yes, I want to stay alive, but just BEING ALIVE is not enough to sustain me. Sometimes I make the choice to allow a certain degree of risk into my life, because these freedoms and interactions are part of the reason I worked so hard to stay alive in the first place. I didn’t go through all the trauma and drama of a double lung transplant to sit inside all day and watch the world pass me by, I did it to LIVE! I’d rather die from a little bit of living than have a long life of safe emptiness.

I don’t expect the world to accommodate me. In fact, I know it won’t, which is why I’m constantly accounting and accommodating for the careless majority. But I don’t believe it’s  unreasonable to think that it would be nice if more people occasionally thought about what it’s like to live life with a health condition or disability, and maybe, just MAYBE made a little effort to accommodate US for a change. Just imagine if people took catching and spreading a cold or the flu as seriously as they’re currently taking the Corona virus. If people were ALWAYS careful to cover their coughs and wash their hands and prevent the spread of infection. The world would be so much safer, not just for me but for everyone! But most people don’t take a cold or the flu seriously, because they have the luxury of knowing they won’t die from it. The fact that there are plenty of people out there who can and DO die from those and other “minor” infections every year apparently doesn’t matter when these people are an invisible minority. Let me tell you, feeling like you’re just a disposable statistic REALLY sucks.

So no, I don’t blame people for going to work while sick when their employers give them no other choice. I think it’s wrong, but I blame the employers, not the employees. At the same time, don’t throw all the onus on people like me to keep ourselves safe. We’re in the minority here, and it’s literally impossible for us to protect ourselves from all of the rest of you. Would it kill people to try to have some awareness and consideration for those of us struggling with health issues, and to make whatever accommodations they can to minimize or prevent the spread of infection? Because I guarantee that not doing so WILL kill some of us.