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.

Workout Videos Gone Wrong

In college, my roommates and I decided to dedicate a month to doing a workout video every day. This did not happen. One by one, we all stopped doing it... within two weeks. I dropped out first on the second day. Not because I was unmotivated, but because my ankles began to hurt. The video entailed a lot of jumping (jumping jacks, burpees, etc). After the first one, my ankles were a little sore. By the second one, I was limping.

I thought I had just hurt my ankles a little bit and kept walking on them like normal. After a few weeks of pain, I finally went to the orthopedic doctor. After taking CT's of my ankles, he delivered me the same news that he had told me about my hips. I had avascular necrosis in my ankles. I asked all the right questions, but there was only one that mattered. What was I going to do about it? His answer brought me to tears. He told me that there was no good treatment for avascular necrosis in ankles. Unlike my hips, ankle replacements aren't something they do in America. I think maybe in Switzerland and other places in Europe, but not the US (thanks FDA). The only option was to fuse my ankle bone. This would make me unable to move my ankle joint at all. They said it would affect my walk and I would only be able to wear flat shoes. I joked that they would have to fuse it in the shape of four inch heels like Barbie... They said no.

My next move was to go to the best orthopedist in America. I was hoping that he could offer a different solution besides Switzerland or fusion. NOPE. This time he did MRIs and said that not only was my ankle deteriorating, it hurt so much because I had a whole bunch of little fractures around it, including in my heal and bottom of my femur. Well no wonder! He put my "worse" ankle in a boot and my other ankle in a wrap, plus constant crutches. He said I would wear those until I was ready to fuse them. Woah woah woah woah WOAH. There had to be another option.

Buh-bud-da-daaahhh! Stem cells. Unfortunately, this is a practice that is not covered by insurance (thanks again FDA), but we looked into it anyways. We talked to the "best orthopedist in America" and he said it definitely wouldn't work. We then talked to the doctors who did the stem cell injections and they showed me x-rays of people who did it and regrew bone. The patients weren't exactly like me, but similar enough that I was willing to try.

The first few times I did it, they used protein plasma (which has some stem cells in it) they took from my blood. The process was excruciating. I had to be fully awake when they did it for some reason (I honestly can't remember why) and they used a live x-ray so that they could see the bone and give me an injection directly into it. They numbed the area where the needle would go in, but when they injected the cells, I literally screamed bloody murder. I think that may have been the most painful thing I've ever experienced in my life, which is saying something. For the scientific explanation, it was painful because a lot of liquid was going INTO my bone making it expand. If you've ever had growing pains, imagine all that pain over the years concentrated in to 20 minutes.

I understand why they wouldn't let my parents in the room when it was happening. When I came back for my second session, I saw the nurse who had been holding my hand the first time. She showed me the scabs where my nails had dug into her hand. I didn't even realize I had done it. I apologized to her profusely and she said it was ok- that's what she was there for. Even though it was so painful, I was able to walk like a normal human being again. I think I did five treatments overall. The last one was with my bone marrow. Compared to the ankle injections, getting your bone marrow taken from the back of your pelvis is nothing. The worst part is to hear them hammering into your pelvis. The only pains were from the numbing shots and some pressure when they actually took out the marrow. So if you ever want put yourself on the bone marrow donation list, do not be afraid of the extraction! It really isn't so bad and they will probably give you loopy medicine anyways. I encourage everyone to get on that list!! People like me need you to save our lives!

But let me step off my soapbox. The point is stem cells are AWESOME. After a few months, my bone regrew. We went back to the "best orthopedist" yada yada yada and showed him the x-rays of my regrown bone. His response? It probably regrew because I had improved blood flow, not the stem cells. Oh ok. Suuurre. Makes sense, sporadic regrowth. But here I am. Walking around! I still don't run though. I'm not sure if it's fear of fractures or because it's sound medical advice. But maybe one day... :)

Last Night's Epiphany

I'm taking a quick break in my journey to share something in real time with you all. My last post was about depression and I tried to be very honest. In light of that, I also want to share with you what's going on right now.

Last night, I was lying in bed having a panic attack. I have had a few of these in the past few months and have developed a technique to deal with them. First, I turn on some music from my "sleep" play list. Next I wrap a blanket around my back and cross my arms in front of me and pull tightly. I had the idea for this because I have heard that when people with autism start having panic attacks they have someone/something hold them tightly because it depresses the central nervous system. While holding myself, I sing with the music because it helps me control my breathing. The attack usually lasts for at least 30 minutes.

When having a panic attack, everything that I try not to say to myself in daylight pops into my mind. Right now, my biggest internal struggle is not having a job. During this episode, I asked myself why not having a job was giving me panic attacks. I answered that it's because the only thing I could ever depend on was being smart. I've never had health or a love life, but I always had my brain. That was my success in life. And without having a job, I felt I was failing in my "smart" area of life. So I had lost the last thing that I felt good about.

Then I went on to how I felt betrayed by my body. This is nothing new to me. My body has betrayed me since I was born, but now, as a young adult, I feel it has betrayed me the most. On the inside, my bones break easily, only 1/3 of my lungs work, I don't produce any tears, and I can't have children (I know a lot of you don't know these things, but they will be addressed later on in my blog). On the outside, I have stretch mark scars everywhere and extra skin on my torso from all of the steroids I had to take. I honestly am not sure which one is worse: the internal or external betrayal. From the inside, things fail. From the outside, I feel ugly. And I know this is why I fail at a love life. Because I don't feel that anyone could love someone who has such a failure for a body. It's as simple as that. So the three pillars that I believe compose a life, health, love, and knowledge, are all broken for me.

As I figured this out, I had an epiphany. It shouldn't have been an epiphany because if I had told this to anyone, they would have easily said that I needed to go to therapy. But I couldn't see all of these things until I was mid-panic attack. I realized I cannot solve these issues by myself. What I've been doing is (clearly) not working. I tried to wrack my brain to figure out what I could do to feel better about my body or to try to let someone in to my life, but I honestly have no idea how. It took all three pillars completely collapsing on me to see that I need help.

This post was very difficult for me to write. I always fear rejection for what I've written in my blog. But I also feel liberated when I write down what I'm afraid to tell people. What I don't want from this post is for people to contact me and say that things will be okay and that I'm beautiful how I am or that I'm still smart even though I don't have a job. What I have said is how I feel and no matter how many times people say these nice things to me, it will not help me change how I feel about it. These kinds of feelings require more than pep talks and kind (and I know sincere) words to make me feel better.

My sister always says that everyone should see a therapist. I believe that's true. We all have something we're struggling with that we don't know how to fix. People may try to reassure you about whatever you're coping with, but it doesn't work. It may be that you're unhappy with something about yourself or you're having trouble coping with something (like an event or person). As you're reading this, I'm sure you are thinking of what it is that perhaps you struggle with. I'm not saying that you have to go to therapy, but I'm asking you to think about it. You may decide that it's not the thing for you. But you also might decide it is. I know that it's my turn to go back.

It's Bad

I stared at this page for 20 minutes before I started writing. I honestly didn't know how to begin. How do you start a post about depression? It's not something that is easy to talk about and, honestly, some people don't want to hear about it. To put it simply, it's bad. Not the person, but just depression in general. It's a bad thing that people have to deal with. Nonetheless, it was a part of my story.

The first thing you should know about depression is that the person who is depressed often doesn't know they are depressed. It's nothing that anyone ever wants to admit to themselves. I wrote about having depression before- but that was some evil drugged up monster from my days in the isolation hospital that I barely remember. This was different.

I was tired all the time. I thought I was sick with a flu or something. I barely left my bed- only to use the restroom, eat food (not very often), and go to class (even less often). I had stopped showering regularly (about every three days compared to my normal once a day) and I cried all the time- but never in front of anyone and I'm not even sure what about. But I remember there was a lot of crying. And I hid it well. Eula and Caitlin were completely unaware. They would ask me to come out with them and I would just make excuses until finally they stopped asking. I slept all the time- probably only awake 5 or 6 hours a day. And I took ambien at night because I had slept the day away. It was bad.

The first time I was told I was depressed was by my sister, Brandan. She and I had gone to dinner together at the Hula Hut. She was the first person with whom I was honest. I started by telling her I didn't know what was wrong with me- I was crying all the time, slept all the time, didn't want to eat, and just felt sick in general. I can still remember exactly what she said, not that it was a complex sentence. She said, "Bean, you may have depression". She said she had seen it in someone else close to her and this was exactly what it had looked like. I laughed at that. My mind went No way- you don't have depression. Depression is really bad and you are not really bad. And I said that to her. She told me that it was bad. Everything I had just told her was bad. I had lost weight from not eating and stopped caring about doing anything. That's bad. I started laughing again until I began tearing up. And that was the first time I thought that I might have depression.

That night I went home and laid in bed again. Brandan told me I had to tell Mom and Dad. She said that I needed help and it wasn't something I could do on my own. I did not want to tell my mom and dad because I felt stupid for having depression. Why couldn't I just be happy? Why can't I choose to be happy? It was frustrating. So I called Mercedes instead. I told her what Brandan and I had discussed and she agreed with B. I had to tell Mom and Dad. So finally I called.

I need to preface this with the fact that my mom and dad are fully supportive of me and everything that I had to deal with in depression. But when I first told them, they didn't understand. They had never dealt with depression and never really been explained how it worked. So when I called them crying and saying I thought I had depression, they kind of went - what are you talking about? I had been hiding it from everyone, including them, so they were completely blindsided. They just didn't understand what I was saying and I wasn't doing a good job explaining it to them. Also, I don't think any parent every wants to hear that their baby is depressed. I got frustrated and upset with how they were reacting so I hung up and called Mercedes again. She helped calm me down and then called Mom and Dad. My mom was in Austin the next day.

Now I have no idea what Mercedes said to them to make them understand what was happening to me, but I am so grateful that I had her. She talks with people who deal with psychological problems for a living so she was able convey what depression really was to my parents who didn't understand. I was so lucky to have people who understood what depression was instead of hearing me say it and then ignoring it because they didn't know what it was or how to help.

So my mom stayed in Austin with me for two weeks while my dad held down the fort at home. Enough to get me to start showering and eating again. She went to all of my classes with me and got me back to normal sleeping hours. She was so amazing, I can't even begin to describe. She was literally with me 24/7 for two weeks- leaving Florida and anything she was supposed to be doing to come take care of me. I was put on antidepressants to help me feel better. But it's never an instant fix and sometimes antidepressants aren't enough. It's not like I woke up one morning and said "I'm happy! I'm cured!". I soon had to go to Cincinnati for my regular check up and saw Mercedes for the first time since I had admitted to being depressed. One night it was just Mercedes and I awake and I broke down to her. I told her that I was tired of everything. Tired of being sick or broken all the time. I told her something that I have never told anyone else. I said that if I got really sick again, I didn't think I would fight back. I was tired of fighting illnesses and didn't want to do it anymore. I look back at that now and I hate that I thought that. It's not who I am. But depression does awful things to a person.

So here's my spiel: If someone ever tells you they are depressed, they need you. It's bad. They need you to understand and not brush it off. And there are things that you should and shouldn't say to them. They don't want to hear "it'll be okay" (because they don't see that right now) and "cheer up". What they do want to hear is "you are important", "what can I do to help", and "I'm here for you".

Foggy Times

The last post featured both hips. But in between those surgeries, there was another... experience. When I went back to school in August, my vision started becoming blurry. No, not blurry, foggy. Initially, I assumed it was something to do with my dry eyes. However, after a trip to my ophthalmologist, he was like "daaayum Gena, you got cataracts". Well that's what I heard at least. I'm guessing he probably broke it to me in a much kinder, easier way, but that's what I like to think happened since I don't actually recall it. Cataracts is a foggy film that covers part of your eye making it difficult to see. Usually, people don't get this until they are pretty old. But guess what caused mine? Steroids- shocker! Because steroids are the devil.

So we set up a time to do one eye and then the other- one in August, one in October. I did the first one at this amazing hospital in Austin. I have no idea which one it was, so don't ask Austinites. They even had these hospital gowns that had pockets in them that they blew warm so that you didn't freeze. Also, we did the surgery ON MY BIRTHDAY. So they fixed up a room with lights for me and sang! I think they felt really bad for me. So this was probably the nicest hospital I have ever been to. The surgery went really well and I woke up from my surgery and offered to drive, like you do when you've been sedated. Keep in mind I was on crutches with a fresh hip replacement for my right hip and could literally not drive. Physically impossible. My mom gracefully declined. I don't remember this happening.

I wore an eye patch for a week and went around talking like a pirate because why the hell not. Finally, the patch came off. OH. MY. GOD. The first thing I said was "There is no way in hell I should have been driving". I'm pretty sure I could have been certifiably blind. Like I couldn't read signs or really see the lines on the road- especially in daylight. I spent the next few days shutting one eye and then the other. My new, cataract-free eye had the most vibrant colors I had ever seen! I couldn't get over it! When I went back, I asked the doctor if the colors were always this vibrant and I had just gotten used to the cataracts. He told me that, as people age, they slowly lose the vibrancy because they very slowly get cataracts. Basically, I had eyes of a newborn and it was brilliant (haha pun). So all you people reading this- you are missing out on the vibrancy! But don't worry- one day you too can get your cataracts removed.

Naturally, after the first eye, I got the second eye because is was still hella foggy. This time I had the surgery done at a different hospital. It was not my birthday, they did not have awesome warm hospital gowns, and it was rather lackluster compared to the other hospital. Then, while they were doing the surgery, something must have happened because I suddenly became aware of what was happening. My eye opened and was very blurry. I said something out loud- I have no idea what- and then my doctor said to me "Genevieve, I need you not to move your eye please". I said okay and then promptly went back to sleep. So that was horrifying. I'm going to preface this next part with a) I do not remember this and b) sedation can seriously alter your personality. APPARENTLY, I woke up and then started telling the nurse about how horrible their hospital was and all the great things about the other hospital. So yeahhhhh. I felt pretty bad about that in retrospect.

And yes- I again offered to drive. My mom said no.

My Hips Don't Lie

So things were going along pretty well. Infusions were being tapered off, I was in college at UT, and I was feeling pretty good overall. One day I was carrying my laundry down the stairs and my hip started hurting. I didn't think anything of it and continued about my day. This went on for over a month until I went home for summer break. It was hurting every day and I was constantly limping around so I went to a chiropractor. Not the best idea, but we thought it would help at the time.

We went twice to the chiropractor and it did nothing to help. So we ended up going to a doctor. He had me move around, watched me walk, and then took some x-rays. Then he came back and told me that I had avascular necrosis in my hips. The right one was worse than the left because it had already fully cracked.

For my friends who don't speak medicine, avascular necrosis is when your bones begin to die due to lack of blood supply, especially in joints, leading to fractures and breaks. So I had this awesome bone disease and it had already fracture my right hip. Let the surgeries begin!

I had my right hip done in June of 2010. Because of the atrophy from being in the hospital, my muscles were still not back to normal- about 70%. They had given me an epidural so that I wouldn't feel anything when I woke up from the surgery because apparently that would have been bad. They took me off the epidural after 2 days and I started "walking". Ok, more like shuffling. They gave me a walker the first day, but I was able to just use crutches the next day. I was on crutches for about a month and then just used a cane. When I got back to college, I was down to a limp and my right hip felt great!

Written out like this, the process seems somewhat easy. But it definitely wasn't. There was a lot of pain and a lot of drugs. I felt very helpless. I couldn't move easily or quickly and I had to be very careful. If I rotated the wrong way, it could pop out. If I stepped on it the wrong way, it would pop out. If someone stepped on me, the world would explode. Things like that. And the physical therapy. Aka PT. Aka pain and torture. I HATED PT. The worst was the leg lifts. You laid on your side and tried to lift your leg. At first I couldn't even lift it- someone had to help me lift it. And I couldn't do it with a shoe on for about 2 months. Considering that they cut a 6 inch hole into the outside of my leg, this exercise was by far the hardest. The muscle was pretty destroyed and I still find that it is my weakest leg muscle. So yeah. Pain and torture.

You may think this hip story is over. But wait. Part Two: The Left Leg! In October, I had rehabilitated pretty well. I wasn't really limping anymore and then BAM. Left hip hurts. It was the same old, same old. It had cracked and needed replacing. So repeat of above, but this time over Christmas break. This time, I only had my already-surgeried-on right leg to keep me standing. So it was a bit harder than before. I was still on crutches by the time school started again. I think it took me 3 months this time to get off crutches. But I did do it!

And now I can walk, I can talk, and I can even walk AND talk. They said it would probably be 15 years before they needed replacing again. I'm betting on 30.