Take a Breath and Keep Going

I was walking to class, running a little late. It was a warm afternoon and I got to the escalator and it was broken. I thought, "you've got to be kidding me". I walked up it and then stood there for a moment completely out of breath. Not like, out of shape out of breath. Like I can't breathe at all- I'm afraid I'm going to pass out- out of breath. 

Fast forward to the weekend. It was our song class show night. I kept coughing and coughing. I was worried I wasn't going to be able to sing, but the adrenaline kicked in and everything was fine. 

The next day I checked into the hospital.

The pulse ox read 80%. For my non-medical friends, a pulse oximeter tells you how much oxygen is in your blood. Normal is above 95%. Below 90% is getting dangerous. Being at 80% is bad. I was put into the ICU and put on something called a VPAP. A VPAP looks like the masks a fighter pilot wears and forces oxygen into your lungs. Whenever I took the VPAP off I would only be able to say a few words at a time and then take a breath and continue.

So I have the best- and by the best I mean the worst- timing ever. My parents were overseas on their anniversary vacation so they couldn't get home quickly to help me. I'm lucky that I had Carina there who could come over periodically throughout the day while she was running her own architecture business like a badass (shout out to Restructure Studio!). But there were periods of time were I was alone in the hospital with doctors coming in and out.

As soon as Mercedes heard that I was in the hospital and knew that Mom and Dad wouldn't be making it there any time soon, she took off from work hopped onto a plane. She was the advocate and friend I needed in that hospital 24/7. But she wasn't there before I had probably the worst encounter I've ever had with a doctor.

Now I was on strict instructions from my Cincinnati BMT doctors to NOT let them biopsy my lung because the irritation could cause GVHD (graft versus host disease) of my lungs. Then this doctor came into my room and said that she wanted to biopsy my lung to see what kind of infection it was so they could make an antibiotic cocktail to combat that specific type of bacteria. I said no and explained why I couldn't. They could afford to give me the gamut of antibiotics and I could not afford to get GVHD of the lung. She then proceeded to bully me and ended with the sentence "fine then, if you want to die" and left the room.

I was 23 years old, by myself and afraid. I called my parents (who were working hard to get back to the US) and my dad said that the next time she was in the room, to call him so he could talk to her. An hour or two later she came back to try to convince me to get a biopsy, but my dad was on the phone. I don't remember exactly what was said. All I know is that he was somehow advocating for me from the other side of the Atlantic ocean. They had a heated argument in which my dad said that she was way out of turn in saying that I was going to die if I didn't adhere to her treatment plan (because that's NOT true at all) and that she could not come back into my room until Mercedes arrived.

Mercedes was there a few hours later, heard what that doctor said to me and then told her off again. Needless to say, I am so thankful for my family. Merce and Carina spent the evening with me while Brandan facetimed with us. Mercedes spent the night and by 10 am the next morning my parents were there.

The ill-spoken doctor was allowed back in my room since I had a family member there who could speak up for me (while I was huffing and puffing between words). She returned when my parents came and apologized for how she spoke to me and agreed to not biopsy and continue with giving me the wide scope of antibiotics.

I was in the hospital for a week before I was able to go home. My family standing by me through all of it. 

But over the next few months I noticed that I was short of breath a lot of the time. When I went up to Cincinnati for a check-up with my BMT docs, they scheduled an appointment with a pulmonologist. I did a pulmonary function test (PFT) and they told me I was at 42% lung capacity. They said this like I should have been expecting it, but it was a complete surprise to me. In fact, the doctor told me that I had to have known that since after I had my BMT. After understanding I had no idea what he was talking about, he told me I had bronchiolitis obliterans- that my lungs are slowly scarring over which is why I get winded so easily. Also, this means that I could quite possibly need a lung transplant in the future.

I freaked. I didn't understand how I could not have known, how they could not have told me that I had another disease due to the transplant. That my lungs were slowly dying.

I went back after another few months and I was down to 38%. Another few months down to 35%. Another few down to 33%. And then it stopped...

I am a lucky person. I have to admit it. I have been at 33% for a few years now and I don't intend on going down any further. I breathe ok, but I will never be a marathon runner. I do dance for exercise that gets my heart rate up and makes me breath hard. I choose to walk to my grocery store around the corner and carry all of my groceries back even though I know sometimes it will be heavy and I will be panting when I get home. And I chose not to waste time and to walk up 6 flights of stairs when the elevators were backed up at work. I got to the top and all of my muscles ached, not because they aren't strong, but because they didn't have enough oxygen. I will do these things and continue to push my body and lungs because I will not let my lungs tell me what I can and cannot do.

I will take a breath and keep going.

Unsung Heroes

It's been 7 months since my last post. Obviously I don't like coming back here. My time keeps getting farther and farther apart between each post. It's both cathartic and painful. I end up crying as I write 100% of the time. But this time, instead of telling you the next horrible thing that I had to go through, I'm going to share some of the really awesome things that I can now appreciate that other people did. The unsung heroes of BMT kiddos.

1. Did you know you have a diet restriction when you get a BMT? This is NOT the good thing- wait for it... Like worse than a pregnant lady. Needless to say no sushi, no alcohol (ok I was 18 anyways), no deli meat, no cheese really (unless it was super lame cheese like the least sharp cheddar ever), NO FRESH FRUIT (all I wanted was some strawberries, you guys!), etc. Basically, everything had to be cooked until dead. So apparently there was a food all BMT patients wanted at some point: french fries! Because what kid doesn't like french fries?! Problem is, they have to be FRESHLY cooked every time- nothing that had been sitting around. At the time, when my parents brought me some french fries from the McDonald's a block away from the hospital and told me that the McDonald's employees made them fresh for me, I didn't think about it (oh hey self centered 18 year old girl). Now I think about that and smile happy tears. Cincinnati Children's Hospital has one of the largest children's BMT units in the US. The number of times that parents show up to that McDonald's and ask for fresh made french fries (say that 10 times fast!) must have been innumerable (and still happening to this day, I'm sure). And I'm guessing these McDonald's employees know what's down the street (oh hey sick kids) and they do it every time. I mean, they may not have been happy about it all the time, BUT THEY DID IT. And that's all you can ask for. When your chemo'd up kid that barely wants to eat anything- because it is guaranteed to make them vom- wants any type of food, a parent is desperate to get it to them. And that CCHMC McDonald's delivers. So thank you McD's. Because that was a definite staple to my oh-so-specific diet and many other BMT kiddos as well.

2. The guitar guy. Ok so I kinda hated him at the time- not gonna lie. Not him as a person, but the happiness he brought. I was an 18 year old girl who watched her friends on Facebook go off to college and have fun, who knew what she was missing. So this guy with his guitar and soothing songs pissed me off. And he knew it. When I first met him, I tried to be nice and listen. But that quickly ended as I felt worse. Finally, one day he came by and didn't play a thing. He just asked me what kind of music I like. The next day I got a mix CD from him and it was actually pretty good. Some of the songs I knew, some I didn't. But more than what he did for me, it's what he did for the younger kiddos- the five year olds who wanted to hear the hokey pokey and all those kids songs. He spent his days going from room to room cheering up the little ones and making them smile. Yeah- maybe he didn't quite reach the angsty teenagers, but he helped a lot of kids. I can definitely attest to the fact that a smile is some of the best medicine.

3. The nurses. Yeah- I know that we all know nurses are awesome. They can make a hospital experience 100 times better. And the nurses at CCHMC did. The best example is Halloween. It's not just on Grey's Anatomy that hospital employees dress up in costumes for the pediatric unit- it's REAL LIFE. Whaaaaat?!? For real though. They made candy stations for the kids to go by and get candy (safely so that nobody got sick from one another). They decorated the halls and I think there was even a little music. I didn't fully participate, but I did get dressed up (I have NEVER missed a chance to dress up, guys). So yeah- holiday celebrations in the hospital aren't just for the TV shows. That's real life too- and all because of the AMAZING nurses who take time out of THEIR lives to help the kids feel somewhat normal in their completely abnormal hospital world.

So yeah- life sucked a lot during the BMT years. But there are incredible people out there that do things for kids that they don't even know. They help these kids to feel some bit of happiness in the dark times of their lives. I was able to witness that as an (almost) adult- and even got to benefit from it myself. So I'm going to say thank you to those people- even though I know they will probably never read this. All of you who are reading it will know that they are the unsung heroes of some BMT kid sitting in his hospital room fighting for his life.