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.

Birthday musings

Today I am 41 years old. 

A year ago I had a huge blowout bash to celebrate my 40th birthday. The party was spectacular, but there was definitely a grim intent behind it. At 40 years old, I knew that I had far exceeded all expectations regarding my life expectancy. I was increasingly aware of this as my health deteriorated in recent years, and particularly when my lung function dropped sharply during the 3-4 months immediately before my birthday. I was keenly aware that I might not have that many years left, and I wanted to celebrate with as many of my family and friends as possible while we still had the chance. It was a very deliberate "come to my birthday, not my funeral" celebration. 

Even with all that, I had no idea just how quickly my fears would be realized. At the time I thought I had at least a few more years left, and I was just taking advantage of the 40th birthday milestone. Little did I know that just a few months later I would be in respiratory failure, on the verge of being ventilated, fighting for my life and waiting desperately for a lung transplant. Things got so bad during that time that I had multiple conversations with my loved ones about dying, trying to prepare them as I had been preparing myself. By the end I was so miserably uncomfortable that I actually wanted to die just so the suffering would be over. I was holding on by my fingernails, surviving one day at a time. I certainly wasn't thinking about my 41st birthday, and if I had it would have been to wonder whether I'd even see it.

Yet somehow, miraculously, here I am, celebrating yet another year of life. It definitely isn’t the life I would have expected a year ago, both for good and for bad. On the one hand, I can BREATHE, to an extent that I had forgotten was possible. I’ve mostly lost my trademark CF cough. I’m putting on weight without even trying, instead of struggling to hang on to every pound. My health is SO much better than I could ever have imagined! On the other hand, I’m still recovering from an incredibly difficult, complex, painful, and invasive surgery. I’m managing both short and long term complications, and may develop additional problems as time goes by. And I must always live with the knowledge that rejection could strike at any time, and that there’s no way to predict if or when that or any number of other complications could take me out.

It’s definitely a mixed bag – but, I’m alive! And as long as I’m alive, there’s always hope for better things and positive outcomes. Hope is a somewhat unfamiliar and, honestly, frightening emotion for me, and I’m still learning how to integrate it into my life. For some reason I have a much easier time anticipating and preparing for the worst. But I’m trying to learn how to infuse more positivity into my life, and to start anticipating the best for a change.

I’m 41 years old, but my lungs are only 20. Against all odds I’m still alive, yet for some reason my dear donor lived only half as long. I unfortunately don’t know anything about my donor, but it’s clear that their life ended before it even really began. In a way, every birthday that I celebrate extends their life just a little bit longer. They are an essential part of every experience I have, every single breath I take. I hope that I can use those breaths and live my life in a way that would make them and their family proud.

I spent my entire adult life expecting to be dead long before now. Suddenly, I’m trying to imagine what it might be like to continue living for another decade or two. That’s a lot of birthdays I never expected to see! However many I get, I hope I can make the most of them, and always remember how fragile and precious every moment of life truly is.

I'm a professional, really!

Getting ready to pretend to be a Real Social Worker and go to an actual CEU training! Partially because I'm trying to get my head back in the game, but mostly because I've been a liiiiiittle distracted this licensing cycle and have only done 3 of the 30 credits I need to complete by the end of August. Really praying no one in the room has a cold... Also, I'm a little intimidated about being the blue haired freak in a room full of professionals!

Up and down but mostly up

What a week!

Last weekend I decided it was time to do something new with my hair, since most of the purple had washed out. One box of hair dye and a few hours later, I had successfully turned my hair, my skin, and my bathtub a stunning shade of Sonic the Hedgehog blue. Apparently allowing a bottle of hair dye to fall into the hands of a novice was a disaster waiting to happen. Anyone considering using Splat’s Midnight Indigo, be warned: that stuff is basically a nuclear bomb of color! I loved what it did to my hair, but was less than thrilled about becoming half Smurf in the process, and about the Jackson Pollack paint spatters all over the bathroom. Fortunately most of the extraneous color came out with a lot of scrubbing, though I keep turning the bathtub blue all over again every time I take a shower. After all this I may never touch blue hair dye again, but at least it’s fun for now!

On Monday I had my monthly bronchoscopy. Usually it just leaves me groggy and with a moderately sore throat for about a day, but for some reason I had a much rougher recovery this time around. When I woke up afterwards my throat was KILLING me, I was nauseous and had a headache, and I was very groggy and wobbly. It took me days to feel human again, including one night where I didn’t sleep at all due to persistent coughing because my throat was so scratched. So that was loads of fun. On the plus side, my doctor said my airways definitely looked better than last time. Nothing was clogged with debris, and though the airways were narrowed, they weren’t AS narrow as the previous time. He said it’s still too early to see real results from the Sirolimus, but hopefully it will have an impact by the time I have my next bronchoscopy. And HOPEFULLY soon we’ll be able wait more than 4-6 weeks between bronchoscopies.

Side note, the Bronchoscopy Collection is growing nicely. Right now they all live on the coffee table, but a few more bronchoscopies and they may need to find a new home!

On Friday I had an appointment with my transplant team, and did pulmonary function testing. Since I was several days post-bronch, my airways were pretty much at their best. Even so, I was surprised to find out that my lung function was up to 90%! That’s the highest I’ve managed post-transplant! It was very exciting to break into the 90s, so of course Katherine and I had to celebrate with Classic Cake!

It was an up and down sort of week, but fortunately I did eventually recover from the bronch, and definitely ended on a positive note. Hopefully everything will continue on an upwards trend from here!

Back on the bronch train

In November my airways looked so good during my bronchoscopy that we thought things were finally healing, and that I’d be able to go longer than a month before needing another one. At the time that was very exciting news, but unfortunately it was a bit overly optimistic. A few weeks later I was already wheezing and my lung function started dropping. I stubbornly tried to push through it, but finally gave in after drastically huffing and puffing my way up a flight of stairs and watching my numbers continue dropping rapidly at home on my hand-held spirometer. I didn’t expect to be able to get in for a bronchoscopy until after the new year, so I was very surprised when they had me on the schedule less than a week later on December 26^th. I guess not many people want to go in for procedures the day after Christmas!

They found a lot of obstructed airways during the bronchoscopy, far worse than the one in November. We don’t know why my airways were so good in November and then so bad a month later, but I’m once again on a monthly bronchoscopy schedule to keep on top of things. On the right side they once again found airways narrowed due to scar tissue, but on the left side an airway was fully obstructed with “debris” such as dried out mucus. Due to this I need to get back on track doing nebulizers at least twice a day to help clear out secretions, after seriously slacking and hardly nebbing at all during the last couple months. I’ve still been slacking, but I have been consistently nebbing once a day, and am working on getting back up to twice a day. My doctor also wants me to start a medication (Sirolimus) to help reduce scar tissue, as he expected my airways to stop narrowing by now. I couldn’t take Sirolimus before now as it impedes the healing process, which is pretty much the opposite of what you want immediately after a major surgery. Sirolimus is also an immunosuppressant, so we’ll have to keep an eye on my bloodwork and adjust all my other anti-rejection meds accordingly. The whole thing is pretty disappointing, and it kinda feels like I’ll be doing bronchoscopies every month for the rest of my life, but hopefully my lungs will get their act together and chill out already sometime soon.

I’ve been feeling kinda blah the last few months. I became increasingly unhappy and demotivated while dealing with months of debilitating joint pain, but even now that the pain is gone I’m having difficulty getting my mojo back. I’m very tired a lot of the time, which apparently is common post-transplant, but it’s hard to be social or productive when all you want to do is sleep. It’s also a difficult time of year for getting out and about, since right now a lot of activities involve indoor crowds, which is really risky for me during cold and flu season. I keep thinking of fun things to do, like going to the Convention Center portion of the Mummer’s Parade, and then realizing I can’t. I’m also definitely still adjusting emotionally to post-transplant life, and probably will be for a long time. I randomly get overwhelmed by fear and anxiety when I think about what I went through and all the risks and uncertainties that my future holds. A lot of the time I just want to curl up on the couch and hide from everything. But I’m trying to push back against that and figure out how to make a life that makes me happy while also protecting my health.

I fully recognize how extremely well my transplant is going and how very lucky I am. I’ve seen people go through far worse, and am painfully aware of how bad things could be. At the same time, no matter how smoothly things go, transplant is a difficult journey on multiple levels. I’m navigating my way through both physical and emotional challenges, and sometimes I get stuck. But I’ll keep pulling myself free and moving forward, and putting the pieces together one by one, as I continue figuring out my post-transplant life.

Happy Chanukah!

For the first time since 2016, I was able to light the menorah on all 8 nights of Chanukah -- because for the first time since 2016 I was NOT in the hospital for ANY of Chanukah! It's also been almost 7 months since the last time I was on IV antibiotics and/or hospitalized, and I haven't managed THAT since at least 2015. May this be the first of many hospital-free Chanukahs!