Look Mama, I Made It (To The Top 100)

"This is not how I wanted to make the Top 100," I joked with my parents a week ago, moments after the doctor in the ICU gave me my diagnosis and informed us that I was only the 84th patient with it in the world.

The night after my 25th birthday, my boyfriend called my mom as I puked blood and the decision was made to rush me to the ER. 

In the waiting room my fever spiked, and I passed out on Nick's shoulder. Everything was blurry, it hurt to hold my head up and I was barely able to open my eyes when my mom and Andy arrived. 

Nurses asked me a million questions while my world spun faster and faster, and I kept it together right up until a minute after they left. Nick held my hair while I threw up in an emergency room trash can, with an IV in my hand and tears in my eyes from the burn in my throat. 

 And that was the beginning. 

The doctor came in and told us I would need to be transferred to the main hospital, and that I'd be in the ER overnight or at least until a bed opened up.

Mom and Andy fetched Nick a black coffee and went home to sleep, promising to be back first thing in the morning. Nick slept as much as he could sitting up in a chair close enough to my bed for him to put his feet up. 

Some time around 5:45 a.m. that morning, paramedics strapped me into an ambulance and transferred me to the ICU at the hospital, with Nick following close behind.

The decision was made somewhere along the line to run a scope through my esophagus and into my abdomen yet again - and that's what happened when the nurses woke me up later that morning. It took 3 nurses and 7 different injection sites before they were able to collect blood, but once that was done it was pre-op time. We made small talk about tattoos and they got me into a fresh gown before wheeling me to the OR.

Andy snapped this photo right before surgery - in a rare moment where my energy was there enough for me to hold up a peace sign and pretend like everything was fine.

I was somehow under the impression that once the surgery was over and I was awake enough to walk again, they would send me home. Unfortunately, when the team of doctors came in to talk to my parents about what was happening, we learned that I'd have to stay in the hospital overnight again and potentially for 72 hours just so they could observe.

Morphine was kicking in but I couldn't even look at food. My body was aching, and I was hungry but nauseous at the same time. I wanted to go home.

Nick helped me make a list of everything from our apartment that he could pack in a bag and bring to me so I could at least feel a little more at home despite being in a hospital room.

A few hours later he brought me my chapstick, a hygiene bag, my laptop, a stack of books, my Build-
A-Bear Baby Yoda, my phone charger, pads (because the world didn't think it was giving me enough to handle, it also thought it'd be a great idea to give me the heaviest period I've ever had in my life - sorry for the TMI), and a million other things.

My coworkers, some of the sweetest people in the world, sent flowers to my room and having a nurse bring those in that afternoon was a refreshing change of pace from the norm - which was having a nurse come in carrying a fresh IV bag and packages of sterile needles to draw my blood. I've always loved flowers, but there's something extra special about them when they bring color to the otherwise bare walls of a place you wish you didn't have to be. 

I can't wait to feel better enough to be back at work with my people. I miss them, and I miss the office, and I miss getting up early every day to go to a place where I get to help people.

Not being able to do that might be the hardest part of all of this for me. 

On Saturday afternoon, my mom and Andy (and Nick, of course) kept me company while we waited for yet another round of lab results. We played "Spot It," and "Phase 10" until my body decided it was time for a nap. 

By the time I woke up from that nap, my best friend had shown up and then another nurse came in, this time to tell me I was finally going to be sent home. 

We sat together, all of us, and listened as my nurse explained all of my prescriptions to me and warned me about what I'd need to be careful of in the coming days. 

Mom called the pharmacy and was told they were going to be closing in 20 minutes, so she and Andy sprinted out of my room and booked it to Walgreens where they made it into the drive-thru line AS the store was closing for the night. 

It almost feels like I could've asked the pharmacist for one of everything, I'm on so many different medicines. And yeah, they're kicking my butt. 

I'm using an app on my phone to track what I take and when I take it, and it's set to remind me when I have an upcoming dose. 

Technology is awesome. 

Hydration has been my best friend through all of this. Headaches? Water. Nausea? Water. Hungry but can't eat anything? Water. Throwing up? Water. 

Sore throat? Water. 

And Nick bought me these - Liquid IV packets to mix in with regular water for added hydration. They're fruit punch flavored but without the sugar, so it's basically like drinking Kool-Aid. 

Since I've been home, rest and recovery has been my entire focus. Relaxing is hard for me - I'm someone who hates not being productive or feeling like there are things I should be doing instead of laying on my couch. But I have to be real, and remind myself that resting is the most productive thing I can do right now. My body has been through an awful lot, and not allowing myself the time to recover from that is more destructive than missing a few days of work. 

Even though I slept on and off the entire time I was hospitalized, my body and mind are still exhausted. I think people forget how hard something like that can be on a person. It's hard for me to understand, too. I was in a bed for three days straight, how am I still so tired? 

I'm tired because my body is fighting. Silently.

And it will continue to do that, no matter where I am. 

The doctors have diagnosed me with CAPV, Congenital Absence of the Portal Vein. A chronic condition, and I'm only the 84th patient in the entire world with it like I said in the opening of this post.

"It's not a matter of curing it," the doctor told me a few hours after my last banding. "It's a matter of helping you so you can live with it."

That was a scary thing to have to hear, and scary for my parents to have to hear too... but I have a lot of faith in the team that has taken care of me.

I've always known I was different... but not THIS different. 

Later that night, while my dad sat with me and we talked about how crazy all of this is, I did a quick calculation on my phone. 

I'm one of 84 people in the world with this condition, meaning CAPV patients make up 0.00000108% of the world population. 

Me alone? 1.38462 to the -14th power. 

That is insane to me. 

This stuff first started happening to me when I was six years old. Doctors learned that my spleen was enlarged, but told my parents I would live a full and normal life. For the next eighteen years, they were right. 

On a Saturday morning in May of this year, I was taken to Urgent Care with a UTI. Two rounds of antibiotics later and I was still suffering from pretty severe abdominal pains, prompting the PA to put orders in for me to get a CT scan done later that morning.

That afternoon, I got the call that they had found that I was missing the congenital portal vein. 

The PA told me that in their experience at Urgent Care, they had never seen this. 

She referred me to a Gastroenterology center here, and I've been having banding procedures done there every couple months since to stop active bleeding.

Things got real this time, and sometime in the coming months I'll be seeing a specialist with the Mayo Clinic because my condition isn't something doctors here have much experience with. My case is going in medical journals. My treatments will be largely experimental. 

"This is something we have to get a handle on," my doctor in the hospital told my parents. "We need to address this now, or she'll be spending a lot more time in hospitals and it will only get worse."

So we moved my next surgery, which was scheduled for June of 2023, up to January. 

In the meantime, the doctor gave me viscous lidocaine to drink before meals to numb everything up enough so I can eat solid food. 

I feel a lot of things. Sick. Tired. Frustrated. Scared. But also lucky, optimistic, protected, loved, and ready to fight this. 

I've got the best team in the world so I mean... I can't lose. 

My arm isn't exactly thrilled about the whole thing, though. IV bruise game stronggggg.

I'm not sure if it was the drugs or the fact that it was 1 a.m. or that I was just trying to lighten the mood with comedy but I thought my "ET phone home" comment to Nick when they gave me this was actually pretty good.

Every two hours they would wake me up with these to flush my IV line, which meant they would turn on the brightest fluorescent lights in the universe and wonder why I was cranky. 

Andy snapped this photo as they wheeled me to the OR.

and after that... it was game over. For all of us. 

;) 

thank you to everyone who has been fighting this with me.

thank you to my coworkers who have taken on my job in addition to their own while I've been out.

thank you to my parents for all the trips back and forth to the hospital and all the black coffees and everything you've done for me ever, but particularly in the recent weeks.

thank you to Nick, for taking care of almost everything at home, including me.

thank you to my care team, the ICU counselors, my case managers, my doctors, nurses who changed my sheets and gown about a trillion times and helped me with everything.

thank you to my friends for checking in.

thank you to Walgreens for essentially sponsoring the last few months of my life.

thank you to my dad for sitting beside me while I napped for 6 hours and walking across the street to get Panera soup for me when I got fed up with hospital food. 

I have no idea what to expect from this point forward.

I think Hagrid said it best in Harry Potter. 

"What's coming will come, and we'll meet it when it does."

See you in 2023.