As the world burns

My country is burning, and I don’t know what to do.

I mostly avoid posting about current events or politics – partially due to mental and physical exhaustion, partially because it feels like an exercise in futility. But the current situation is so profound that it feels wrong to be silent. Silence is complicity, and I refuse to be complicit.

It’s so easy for those of us who are insulated from or unaffected by racial discrimination to point fingers and decry the violence that has erupted. But did we also decry the violence that brought things to this boiling point? Did we also take a stand against lifetimes of inequality and oppression, and one senseless death after the next? Why is it only NOW that so many people suddenly feel the need to speak up and condemn? I certainly don’t agree with violent riots, but part of me definitely understands them. It’s very nice to talk about peaceful protests, but people have been protesting peacefully for decades, and little has changed. When peaceful protests are ignored, violent protests follow. Violence is tragic, but it certainly forces an immediate response.

At the same time, it’s extremely frustrating to watch the narrative get hijacked. I watched the news tonight, and most of the reporting focused on looting and vandalism, while the actual protests and the cause they champion seemed to fade into the background. It’s infuriating that activists who are actually seeking justice are being ignored in favor of individuals who are simply using the cause as an excuse to sow chaos for their own personal gain.

I look at the world, and I feel a terrible hopeless cynicism. The problems are so big, so deeply entrenched, that they feel insurmountable. I despair when I see the chasms dividing our country, how quick people are to villainize and discredit everyone they disagree with, how little effort there is to open real dialogue and attempt to build bridges. Even as the country burns, I still can’t see change happening. I just see everyone backing further into their corners and doubling down on everything they already believe. I watch and I wonder how long we can go on like this, how much more we can withstand before society collapses into irreparable lawless chaos.

The world is sick, and I feel the need to do something to help heal it. But I also feel small and helpless, immobilized by my limitations. I can barely leave my apartment, much less go to protests or join in community work. So I watch, and despair, and pray that someone else will do the work for me. And soon even that will become too much, so I’ll close my eyes again, and turn away from the pain and tragedies that I am currently powerless change.

I will retreat back into silence, but it’s not because I don’t care. It’s because I care too much.

Happy Lungiversary to me!

It’s officially been 1 year since my successful double lung transplant! Happy lungiversary to me!!

The last few months have been emotionally intense. Obviously the whole world is in crisis right now, and everyone is struggling and suffering in various ways. I have the added bonus of being in a high risk category and getting to worry about yet another threat on the long list of things that could kill me. But in addition to that, I’ve spent a lot of time remembering what life was like last year during the months leading up to transplant. Thankfully my memories of what it was like to be slowly suffocating to death are faded, and most of that whole time period is a bit of a blur. But I do still remember that it was horrible to the point that I wished for death just so the suffering would end. During these last few months I kept thinking about where I was a year earlier, and being a little traumatized by the memories. It’s been worse during the last couple weeks, which is when I struggled the most and went into respiratory failure last year. Getting a taste of a slow and painful death takes more than a year to get over.

But on May 12^th the memories were different. I remembered getting the news, and calling Katherine and my mom to tell them. I remembered waiting to be brought down to surgery, and then going down to pre-op. My memories of that day are also hazy, but at some point in the ICU afterwards I asked how long the surgery took, and wrote down all the times. 2:19 PM – into the OR. 4 PM – anesthesia. 6 PM – first cut. 12:17 AM – out of the OR. And 6:15 PM on May 13^th, less than 24 hours after surgery – taken off the ventilator and extubated.

I didn’t have any sort of major celebration right after the transplant for multiple reasons. The immediate aftermath of a lung transplant is a crazy whirlwind of pulmonary rehab and testing and doctor’s appointments. It’s exhausting and stressful and painful, and putting together a party was not on my priority list. Due to heavy immunosuppression I also couldn’t be in crowded spaces, which makes it a little difficult to host anything. But most importantly, I was well aware that the first year after transplant is a critical and tenuous time, and I didn’t feel comfortable celebrating until I saw how things went.

As we got closer to the year mark with relatively smooth sailing, I started considering whether I should have a party on the actual lungiversary, or wait a month or 2 for my immunosuppression to be lowered so I could be around more people. Never did I imagine that all in-person gatherings would be cancelled anyway by a global pandemic! Initially I was too upset to plan any sort of celebration. Having life basically be cancelled and being cooped up in my apartment week after week with no end in sight didn’t exactly have me in a festive frame of mind. But as the date came closer, I started to wonder… Maybe we could do a drive-by celebration, as has become popular these days? Maybe a Zoom party? Maybe both?? So I flung it out to Facebook, and the enthusiastic response convinced me to go for it. And I’m so glad I did!! It was so wonderful to see everyone who turned out, both in-person (at a social distance of course!) and online. The car parade in particular was wonderful fun and really got me into a celebratory frame of mind! I got balloons and streamers, and printed posters for my balcony, and baked my specialty lung-shaped cookies for the occasion. Seeing everyone drive by cheering and honking, waving posters, streamers and balloons blowing in the wind, was absolutely amazing! And then I ended up on the news to boot! What an amazing way to celebrate the incredible gift of life!!

At the same time, I’m also keenly aware that while we’re celebrating, somewhere out there another family is mourning. Somewhere out there another family is coping with death instead of celebrating life, and remembering the tragic loss of their loved one. This is the duality of transplant: my life could only be saved if someone else died. I am so endlessly grateful to my donor and their family, and I will never forget their pain and loss. I will always wish there had been some other way.

One year. It’s amazing how much can change in just one year! I’m still recovering, and COVID-19 has thrown unexpected complications into that process. And of course life after lung transplant is never guaranteed, and I will always live with a certain amount of fear and caution and what-ifs hanging over my head. But, against all odds, somehow at 41 years old I’m still here, still laughing, loving, and celebrating. And hopefully I’ll have the opportunity to celebrate many more lungiversaries for many years to come!

I'm famous!

We did a drive-by celebration for my 1 year transplant anniversary, and Channel 10 showed up! They even interviewed me, and I got to talk about the importance of organ donation. It wasn't the celebration I expected, but we did the best we could under the circumstances and I ended up having a terrific time!

A friend also wrote a lovely article about me for a local paper, the Jewish Community Voice:

Transplant recipient marks her one year lungiversary with socially distanced celebration

I'm officially famous!

Pandemic bronchoscopy and Pesach madness

You know your life is intense when your immediate reaction to the thought of potentially catching COVID-19 and suffocating to death is, “Not AGAIN!!”

I’ve been feeling oddly emotionally detached from the chaos and trauma that are currently engulfing the world. Part of it is because my life hasn’t actually changed that much, since I’ve been hunkering down and desperately trying to avoid germs for months now. I also have lots of experience with pondering all the terrible ways I could die and the fact that it could happen at any time, both before and after transplant. So I guess my whole life, and particularly the last year, have been excellent preparation for a world altering pandemic.

Last week I had a bronchoscopy. We debated whether it was worth the risk, but decided it was better to do it now before the world becomes even more chaotic and dangerous. Apparently I made it in just under the wire, as shortly afterwards almost all procedures were suspended. The whole bronch-during-a-pandemic experience was pretty surreal.  It started with a bizarre phone call over an hour before my appointment letting me know that they had an earlier opening available and I could come in whenever I wanted. That NEVER happens!! We then zipped through the trafficless city streets in record time. Valet parking was closed, so we used the lot across the street and walked to the hospital, which meant we got to see the usually jam-packed Perelman Center looking like a ghost town. On arriving at the hospital we had to use hand sanitizer and get checked for fever, and were asked about any potential COVID exposure. The pre-op waiting room was absolutely empty, which is absolutely unheard of. And then there were all the new regulations and procedures to protect both staff and patients: everyone in masks at all times, new extended cleaning routines, being placed in an isolation room post-op. I definitely wasn’t thrilled about heading to the hospital and potentially exposing myself to all kinds of germs, but I did feel pretty safe in the end.

Thankfully this bronch looked better than the last one, and we think I’ll be able to wait at least 2 months before doing it again. Who knows what the world will look like then, but hopefully, HOPEFULLY, it’ll look better than it does now. And 2 months from now will also be after my one year “lungiversary,” which is pretty mind blowing! It’s so bizarre that I somehow managed to survive respiratory failure and a double lung transplant only to end up trying to survive a global pandemic less than a year later. I’m not sure what I imagined my post-transplant life would look like, but it certainly wasn’t this!

Right now, however, I have a more immediate concern: Pesach (Passover)!! The last couple weeks have been a whirlwind of planning and lists and enlisting family and friends to go shopping for me and finding online retailers that still ship in a reasonable time frame and cleaning and cooking and tears and panic attacks. And I know I’m not the only one who has been losing my mind over suddenly needing to make Pesach for the first time. I know this has been an extremely difficult time for the entire Jewish community, and that so many of us are now forced to be alone during a holiday that typically involves multiple huge celebratory meals filled with family and friends. Honestly, I really wasn’t sure I could manage everything! Yet somehow here I am, several hours before Pesach, with almost everything prepared and ready to go. I hope everyone else also found unexpected reserves of strength to get through this, and that we all manage to make the holiday as festive and meaningful as possible.

Last year I was in the hospital for Pesach. I definitely had much higher hopes for this Pesach! But, at least I’m home, and mostly healthy. The mere fact that I’m alive to see this Pesach is a miraculous blessing! Yes, preparing was stressful, and exhausting, and the next few days will definitely be long. But, I did it! Last year I couldn’t have managed even a fraction of the work I put in these last few days. This year, I can BREATHE! So instead of focusing on everything and everyone that’s missing, I’ll try to focus on that. I’ll try to appreciate all that I accomplished, and the very fact that I was able to accomplish it. I’ll try to have the best Pesach I can under these conditions, and know that next year WILL be better. Next year we will be together again, and we will appreciate it all the more for having missed each other this year.

Chag kasher v’sameach (Have a happy and kosher Passover)!!

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.