My Life

You don’t realize it. But at some point, you start referring to things as happening either “before transplant” or “after transplant.” For those of you who have gone through a very significant emotional event, an acute critical illness, a life-changing decision … you know exactly what I’m talking about.

I got my wisdom teeth pulled out Before Transplant. That trip to New Orleans? Before Transplant. And my best friend's wedding was 9 months After Transplant. Right.

Before Transplant, my biggest hurdle was, like, whether or not I should stay in to study for my exams or go out with my friends on the one night I was off from work. 

After Transplant? Every. Single. Thing was a hurdle. In the beginning after my surgery, even waking up was difficult enough. I wanted to sleep in until noon on some days. On other days, I had not slept at all and had already gone to the gym by 7am— “prednisone manic disorder” I called it. I had so much energy, and with that came a price. I wanted to be everywhere and nowhere all at once. My mind was constantly going at 100mph. I couldn’t stop, not even for sleep.

I had to get used to a lot of new things. Becoming a patient was so difficult for me. I had never been in this space before. And I wasn't just a "regular" primary patient with hyperlipidemia or a family history of osteoporosis... No, no. I was a damn complicated one with a fresh solid organ transplant. Immunocompromised. Young. The one the residents would be talking about in between their rounds— “But she is so young! Did you see her yet? In room 5?” Automatically complicated. At the least, I probably got the "Guarded Prognosis" stamp as soon as I stepped into any hospital.

Eventually, I got used to being a patient. And things slowly normalized. And you know, my life right now is pretty normal (okay, so stop laughing), or at least, pretty close to what it was pre-transplant. 

But it will never be exactly what it was back then. And the finality of that never— it will never be exactly what it was back then— will always be so difficult to deal with.

At some point, you do start to grieve the old life that you once had. And you feel guilty about it.

On one hand, you are grateful and appreciative for this second chance at life, the “gift of life.” There is so much depth and meaning that goes into everything. You don't let the little things get to you. You are more understanding of The Bigger Picture— the thing that people yearn for and never find, even after years of soul-searching and dozens of trips around the world, only to feel vastly empty in the middle of the Sahara Desert while asking themselves “Why?” You love only what you want to love passionately, and you now understand that time *is indeed* your most valuable asset. Others understand that, too. You notice the way people truly wanting to spend their time with you. It makes you feel good. People have always been good. It should have never been a question. And you try to explain it over and over again to your friends who ask you the same question over and over again. “You don’t understand, like, everything can actually be taken away from you RIGHT now, you can actually die, your life can change into a ‘before’ and ‘after’ in one second—” but instead, you chuckle and stop explaining. You finally realize what a gift it is-- to see the world in a way that most others don't, and probably never will … until it's too late. And perhaps that is what they really mean when they call it the “gift of life.”

But you did not properly mourn the death of your old life. The mundane things that you took for granted. Being able to walk around with normal, painless joints. Not having to look up which foods interact with your medications while you’re at the restaurant. A month or two without blood draws at the clinic. Waking up a little lightheaded, and actually not wondering, “Is today the last day of my life? Am I in heart failure, again?" (Surely, the next time that I’m in heart failure will be my last. Isn’t that something…) Again, it’s hard to explain, unless you have been there.

Some days are easier than others, and you learn how to process through everything in your own way. I found that my [dark] sense of humor helped me through a lot of my, ahem, issues.

And you know, I remember this:

When I was younger, I had two very big dreams. I wanted to become a doctor. And I wanted to live in New York City. Flash forward 20ish years and here I am… 33 years old, living in a beautiful apartment overlooking New York City, working at a well-known hospital, about to become a double-boarded attending physician…

But of course.

After Transplant. On tons of medications. Immunocompromised. During a pandemic…

So I laugh.

And so it goes.

Maybe we don’t need to constantly mourn our past lives. Or, at least, we don’t have to think of it as mourning. Maybe life is all about us morphing and evolving into other, newer versions of ourselves, and some versions happen to not be as challenging as others. Move on. Let it go. It's okay to not be okay, but you can't dwell forever.

Who knows? Surely, I don't have all of the answers, not yet at least. But I do know that with my second life, my “gift of life,” I still have so much to share with the world.

—-

I’ll end this one with a very special quote that will always remind us of these times:

“Get. Vaccinated.”

— Me

Hip Hip Hooray, Part Two

My friend Lilian, another heart transplant recipient, put it best recently about what it was like getting discharged home after a hospitalization. “Like great, I’m in my 30s, clinging onto my mom post-shower like a naked sloth, this is so great.”

This is exactly what my thoughts were yesterday, as I was clinging onto my mom post-shower after my second hip replacement in less than five months. Cold, naked, hoping that her frail body wasn’t going to fall over as she tried to carry me onto the chair so that I could get my sad little sweatpants on. One pant leg at a time over the course of five minutes.

My poor parents have temporarily relocated to the east coast for the next few weeks, yet again (deja vu number three) to help me out because their daughter just can’t seem to do this adult thing on her own.

I brought it up to my parents this morning. “When you were my age, I was like in kindergarten. Did you think you’d literally be doing the same exact thing and helping me out, making me food, even teaching me how to walk again, 27 or 28 years later?”

“Well it’s a good thing your apartment has such a nice view of the city, because at least we have that going for us,” my dad said, understanding my dry humor. They then, of course, went on to say that they loved me, and that they are parents, and that parents are here for a reason, and that this is nothing for them, and … wow, I just honestly want to go hug all of the parents out there right now for having so much strength and love for what they do. Thank you for all that you do for your children. Parenting will forever scare me and I find it to be the most formidable job of all.

Give me an ICU full of multiple dying patients, and I can handle that with grace and ease. I will save lives. Give me my own child and … I will surely call my parents for help.

Anyways, the reason I had to get another hip replacement was the same reason that I had to get my first one— avascular necrosis. This was caused by the steroids that I took for the heart transplant early on in 2019. Many patients go through this unfortunate & debilitating joint disease. Just another “by-product” of what we have to deal with as transplant patients.

However, it is nothing compared to the alternative: death.

Every time, I remember what it was like when I was trying to figure out “What the F&%# is wrong with me? Why can’t I breathe?” the night before my heart stopped working, the night before The Infamous Admission. Those awful hours in the ICU, wondering if I was going to even make it to see another day in this world. Counting the number of things I would have done with my life if I had been given another chance. Laughing and crying at the irony of it all, and bargaining with myself that I would never complain about anything if I was just able to get through this hellish life event, just this one time.

…

I then tell myself: take a deep breath, Alin, and remember, you can get through this. It’s just a freakin’ hip replacement. Stop overthinking it.

To end this post, I suggest picking up the following books to read, as they are guaranteed to change your life:

• Katherine Standefer’s “Lightning Flowers” (pictured below) & Matt Haig’s “The Midnight Library”

Hip Hip Hooray

I became a surgical patient all over again this past month. Believe it or not, I was diagnosed with avascular necrosis (AVN) of my left hip joint and it required kind of an urgent joint replacement. I had been in so much pain for the last few months and had no idea where it was coming from.

I recall making fun of myself over and over again on ICU Rounds. “I was an ER resident up until like a day ago, we aren’t used to STANDING!” I would be in so much pain from standing up all day. I recall asking the Neuro Critical Care fellows if they thought I had Guillain Barre syndrome. Maybe some sort of weird neuromuscular disorder caused by my anti-rejection medications. Or a neuropathy.

“Is it weakness, or is it pain?” they asked, reflex hammers in hand.

I DON’T KNOW! IT’S WEAKNESS FROM PAIN!!!!!! SOMEONE PLEASE HELP ME!

I told my Cardiologist— “I don’t know how you did residency and fellowship with all that standing.”

My left leg was slowly starting to kill me. I thought I was going crazy.

I was waking up 1-2 hours before each shift to stretch my legs, use ice packs, heat packs— any home remedy I could find. I continued to walk to work, but I started noticing that taking the stairs was really hurting my leg. Something was not right. The pain was intermittent, but it wasn’t fully going away. And I couldn’t take NSAIDs. Remember— heart transplant.

A few weeks later, I went to the ED (as a patient) right before work. That’s when I found out about my diagnosis. As it had turned out, the steroids that I had been on last year had been the culprit. They put me at risk for AVN. I had become one of The Unlucky Ones.

The ED resident, who I knew personally, came into the room with a long face.

“I’m really sorry, Alin. I’m so sorry, but it looks like…”

And we both looked at the films.

My reaction? “YES! OH MY GOD! I FINALLY KNOW THAT I’M NOT GOING CRAZY AND I HAVE A DIAGNOSIS?!!? OH MY GOD! WHERE IS ORTHO?”

Anyways.

I have been tackling this little mess just like the other disasters in my life— totally ready, with confidence, and a dark sense of humor. I mean, what were the chances of this happening to me as soon as I moved to NYC during a f&%*ing pandemic? Leg pain!? Really?! But honestly, who am I to complain. Post Transplant Life comes with so many potential complications. And if this is the one that is given to me this year, then let it be. I am so lucky that it is not another cancer scare (yet, knock on wood), rejection, or an infection of some sort.

And the best part is that the joint replacement is done.

On October 19, 2020, I put my life on hold temporarily and walked into the hospital with my comfortable scrubs and a hospital badge. I made sure to tell the security guard that I was there as a patient for a hip replacement that day. I don’t know why. This guy definitely did not care. But I think I was just nervous. I anxiously chuckled and said something like, “Okay then!” And walked to the pre-op registration area.

I called my boyfriend, the Coincidental Orthopedic Surgeon (Not Mine), and said “Hey, so I guess I’m here and they’re going to take me in. Make sure your phone is on because the surgeon is going to call you when it’s done. How many times have your patients died during hip replacements?”

He said, “ALIN you have asked me this 10 times already!!! Also, remember, YOU ALREADY WENT THROUGH A HEART TRANSPLANT! This is nothing!!!!”

I needed that.

(The answer was zero.)

The nurse gave me a gown and told me to get undressed. She also left a urine cup in the room and said, “Oh and we need to make sure you aren’t pregnant. Please get that done asap.”

Keep someone NPO after midnight and then tell them to pee as soon as they get to the hospital after they have already peed at home. Great.

The surgeon came into the room in his very Surgeon Way (perfectly pressed scrubs, surgical cap already on, ready to conquer the world at 6am - every surgeon looks like this at all times) and marked my left leg. He talked about the direct anterior approach, the incision, and how he wanted me to try to walk as soon as possible right after the surgery. He asked if I had any questions. I had no questions other than, “Can I take my anti-rejection medications so I don’t, like, die?”

Then, they wheeled me up to the Operating Room. The last time I had been in one of these was for my heart transplant surgery, and I forgot how fancy these places were. They are always so clean and white and … intimidating. Every single person working inside each OR knows where to stand and how to “move around the blue.” Every instrument has its place. Every fluorescent light is pointed at you.

I think I was very nervous and trying to make small talk with people. I asked one of the Orthopedic Surgery residents what she was going into and where she had matched for fellowship. Honestly, I don’t remember her answer (I think maybe a trauma fellowship). My own attendings were in the room helping with anesthesia, so it was nice having some familiar faces in there. I joked about how it was going to take a few pokes to get an IV in me and that it was okay— I was very used to it at this point.

I looked over at one of my attendings. “No pressure, this heart has been through a lot, please take good care of it…” and we all laughed.

I remember thinking about how the last time I was in this situation, my life had been on the line. My ejection fraction had been 5%. I could have coded at any second. (I could have brady’d down into cardiac arrest during induction, especially considering that was going to be my second intubation of that hospitalization.) I didn’t even know if I was going to ever see the outside of that operating room ever again. But every single person in the OR worked together so gracefully to make me feel better— the nurse who let me use her phone to call my mom so I could stupidly ask if I was “going to be OK” one last time before they put me to sleep, the resident who played my favorite radio station for me (Tupac, obviously) while they prepped me, that old school Anesthesiology attending who got my arterial line in without an ultrasound (I was impressed), the nurse who brought me extra blankets. They all kept saying that they were rooting for me, that they were really excited for me to get my heart transplant.

And the same happened this time.

Look, this wasn’t just a hip replacement. This was still just as nerve-racking for me as anything. It wasn’t every day that a 32-year-old with a heart transplant needed a new hip in the middle of a worldwide pandemic. I didn’t know what was going to happen to me once they put me to sleep. Was I going to lose too much blood? What if the sedatives weren’t any good for my heart? Would I ever be able to walk normally again? What if the replacement didn’t get rid of my limp?

My point being that … us patients can be a nervous bunch. No matter how many times we’ve been through certain experiences, no matter how much we know or don’t know … being a patient is not easy.

Thank you to everyone who makes the patient experience so much better, every single day. It’s the little things that matter.

Thank you for letting me share my vulnerability with all of you.

Updates

I know that I haven’t blogged in a VERY long time. There has been SO much going on, which I feel like is what I write in every other blog post. But for real, since the last blog post, I have gotten a whole new left hip joint, so there are tons of things to discuss. I also feel like I am constantly updating my social media posts, and who reads this blog anyway, and why even do this … and then I remember that journaling really does help me process everything. I actually just got this app that’s supposed to help me with my everyday emotions called “Daylio” (I know— SUCH a millennial— but at least I’m not getting free scrubs or eyeliner to write that out). We will see how that goes. So yes, since my last post:

• I was diagnosed with avascular necrosis of my hip joints. My left one was so bad that I needed an urgent hip replacement and, voila, here I am. Recovering and on medical leave. It’s kind of like that one time last year, except 100000x easier. 😂

• I have become closer with my organ donor’s family. I have written about her a couple of times in my blog, of course, but now I am very excited to tell all of you even more about her! Her name was Lucy. And she was awesome. And her mom has been sending me so many beautiful photos of her. Her family and friends tell me stories about her and she was so loved, so so loved. It is such an honor to be living with her heart. Lucy, e.e. cummings once admirably wrote: “I carry your heart with me, I am never without it…” ♥️

• I have finished 4 months of ICU-Doctor-Training and WOAH. I still feel like I know nothing. Imposter Syndrome will always be a thing in my book. I will say that it has been especially nice connecting with patients and families on such a deep level in the different ICUs, especially since I have been through some of what some of our patients are going through. With that being said, the days can be exhausting and long. I still absolutely love it, though.

• More interesting post to come soon. I will elaborate on everything that has happened to me. With lots of dark humor, of course.

• Please don’t forget to vote! 🙏
  

Critical Care Medicine

I think that being an ICU-survivor-but-also-ICU-fellow-on-call is quite interesting.

For those of you who don’t know, a “fellowship” is essentially continued medical training in a subspecialty. I finished my residency in Emergency Medicine two months ago. (I am now an ER doctor.) I started my next “level” of medical training in Critical Care Medicine on July 1st. (I am going to also become an ICU doctor.)

I had gotten into Critical Care fellowship, initially, just a few weeks before I had gotten acutely sick in the winter of 2018. Instead of training to become an ICU doctor, I actually became an ICU patient during those weeks. It was a special type of training that not many of us doctors get, and I walked away from that experience with a whole new outlook on life (and this blog).

So fast forward to July 2020…

I decided that I wanted to continue with my medical training and pursue Critical Care Medicine. I wasn’t going to let my heart transplant stop me. I didn’t know how it was going to be. Was going back to the ICU going to give me PTSD? Flashbacks? Would I be able to handle it? Would I remember the medicine? Would I get way too emotional? And oh yeah, there was this whole new COVID thing that I had to deal with…

First and foremost, I do love it here. I love the challenge that comes with ICU medicine. I find myself studying every single night. There is so much that could go wrong with the human body. At the same time, there are so many intricate ways in which the body could slowly put itself back together, most of the time.

I feel a special connection with patients. I know how hard it is— physically and emotionally— to be stuck in these rooms. You are being watched like a hawk. Every single heartbeat is monitored. Every drop of fluid in and drop of fluid out is measured. Everything hurts. The days are all blurred together. And all you want to do is go home.

Things get confusing. Some days, you are doing better. Some days, you aren’t. Plans change. I know how frustrating that is for loved ones— even more frustrating than the patients themselves.

I high-fived a patient who had received an organ transplant the other day after a complicated course and complicated extubation. She asked why I hadn’t been at work the day before. I told her that even fellows had to sleep once in awhile. But my heart sank— she remembered, because she had been awake for some time on the vent the day before, ugh, those spontaneous awakening trials, ugh… I remembered being awake on the vent once…

Anyways…

We have had quite a few “end of life” discussions with many patients, families of patients. Unfortunately, not everyone is saved in these units. I’m learning how to have these discussions with families, as it is a major part of our training. We sometimes have to talk to patients and their families about goals of care. Really difficult discussions about “what to do next” when a patient is on a ventilator and cannot make their own decisions. What the patient would have wanted if they were here right now, we always say.

One time, I was telling my attendings and my co-fellows, “If I couldn’t walk, talk, work, exercise, go out, physically hang out with my friends and family … then my life wouldn’t mean anything!! Easy choice for me! Take me off the vent!”

And our attending said, “Yes, that may be the case for you. But perhaps for someone else— just waking up, opening their eyes and seeing the sunrise— is really all they want. And that’s okay, too.”

And that just gave me the chills.

We can’t assume that the way we want to live is always the “right” way, the “only” way to live.

And, interestingly, that became my first major life lesson in Critical Care Medicine.

Until next time, here is a lovely quote. Oliver Sacks once said:

“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”