Heart Story: Part 1
Here goes draft 12 of the hardest thing I have ever done.You are one of three kinds of people reading this story right now.
- You are family or a close friend that was there for most of the story or has heard most of the story and you are reading this to gain some insight into my emotions about it all because I have never really imparted those on anyone.
- You are someone who has heard very small bits of my story and you want to know more about me because it sounds like something intriguing.
- You don’t know me from Adam, you came upon my blog because someone recommended it or you are a heart patient yourself trying to take away some inspiration from it.
It does help me to know that different kinds of people will be reading because that will keep me true to the story. Finally you all can see some of what I think I have carried around for too long. You are here to lighten my load friend even though you didn’t know it, so in advance, Thank you.My heart story.I should really be calling it “our” heart story because its not just my life that has been changed dramatically. But! I am getting ahead of myself. First I should probably explain what it is exactly that we are dealing with here. I will give you…
THE DIAGNOSIS: Hypertrophic Cardiomyopathy with Restrictive Physiology
Now, assuming that you don’t already know what that is because you went to medical school or something, let me break it down for you. That means that my heart was too big and that it wouldn’t pump right. The first part of that is the most important. My septum, the middle muscle of my heart, was too thick. It was 3 centimeters too thick. Seems like nothing right? But it caused all the difference in the way my heart was able to pump blood. Now on to how it wouldn’t pump right. See a normal heart is supposed to contract and then relax basically bringing the blood in and out. My heart just didn’t seem to want to relax. The issue with this specific type of cardiomyopathy (SPOILER: there are 4 major types, you will do well to remember this later) is that this type has only one treatment in the long-run…Transplant. A few more things about HCM though, because I believe it’s my duty to tell everyone I can about this disease. It’s really a silent killer. You know those sports stars that die suddenly on the field or court? Yeah, 36 percent of those deaths are due to HCM and the statistics only get scarier from there. Now transplant is a beast of its own. It’s not a fix-all like some people want to believe. Even at the beginning I was told that I would basically be trading one disease for another. It’s a great alternative to a life-threatening situation but it also comes with hardships of its own. For example, about 30 percent of transplant patients develop diabetes because they are on steroids. You also take immunosuppressant medication for the rest of your life. Not to mention the constant cloud of darkness that is rejection. I could write a whole paper on rejection at this point but I will save it for another time perhaps. It’s just not the greatest alternative in the world because it comes with so many risks itself.Now that I have hit you with what I am dealing with I can sort-of fill you in on the emotional side. Don’t get me wrong, there are twists as you will see in what exactly was wrong with me at any given time but now you have a foundation at least for what I am about to tell you.When I was 12 years old my brother Noah was born. Noah had Hypertrophic Obstructive Cardiomyopathy (see, one of those other cardiomyopathies that I was talking about earlier). There was no dramatic way that we found out, he was just kinda sick as a baby. What we couldn’t see going on was that he just wasn’t getting the same output of his heart that a normal baby would. With Obstructive Cardiomyopathy, the septum is so thick that your heart has a really hard time pushing out the blood from the left ventricle. There is such a small space for it to pump out. Cardiomyopathy that young isn’t something that you just get out of the blue, even though cardiomyopathy is something that you can contract in some cases. When it’s genetic, like ours, it is likely to show up at birth, at puberty, or in your early 20s. So, the whole family was tested for the same genetic defect that Noah had. I had to spit into a vile for like 20 minutes…super gross btw… and then that was the last I ever expected to hear about it. Fun fact just to sprinkle in here, the genetic mutation that my dad passed on to me has a 50/50 chance of showing up in your children. My dad has four children and two of them have the gene. Science, AMIRIGHT? Anywho, A few weeks later I went to my pediatrician’s office to do my yearly physical for spring soccer. I had just convinced my parents it was a good idea to enroll me back into competitive soccer since I had moved to Houston from Tulsa and I couldn’t wait to start. You have to understand. Soccer was my identity at this point. My friends were the soccer players, the friends I kept growing up all played soccer, it was how I connected with most of the people around me; it was my world. I am old enough now to look back and realize that I may owe my life partly to the fact that my pediatrician at the time thought it was a good idea to investigate this whole heart thing further, just in case. Shout out to Dr. Greely, she is actually still my sibling’s pediatrician. Super awesome lady. Back on topic… My mom made the appointment for an echocardiogram at Texas Children’s Hospital. This is where my brother went at the time because the leading pediatric cardiologist specializing in cardiomyopathy (say that 5 times fast), Dr. Jeffery A. Towbin, ran the heart program. Now, imagine how we felt going into this situation. Nothing had come back about the spit test (I, to this day, believe that it was lost in the mail or something) and I was a regular kid, more than regular because I was playing soccer and keeping up. We expected to walk in, get the results that would be all fine, and go on our merry way. If you ask her, my mom will tell you that she began to get nervous around the third hour that we were there. They had done the echo but then asked me to move to another echo machine to “check one little thing that this machine couldn’t see”. I didn’t get nervous until more than two doctors walked into the fairly small room to give me the results. They didn’t want to call it cardiomyopathy at first. They said it was the beginning stages and that it would be very manageable. I got a picture drawn for me on the white board to explain it; it looked like a speed bump right where the blood was supposed to flow out. Then they hit me with the big one… I was going to have to stop playing all sports. Not just that, but the doctors were saying that I should refrain from physical activity in general. They gave me a script to get some new blood pressure medication, which is what is used to help regulate cardiomyopathy, and sent me home.There are times that I can confirm my mom is an angel. I am sure that she was scared out of her mind after getting this news but she didn’t show it. She was warm and knew me well enough to know that I would talk about it when it finally sunk in. I think she also knew talking about it would make me cry and she knows how much I hate crying in any public place. In the car on the way to some school function that we had to attend right after the appointment was when the first wave hit. I think I was in shock until I got into the car but when I hit that threshold I immediately went down. They had just spun my world on its head. I didn’t know what to do with myself. When we got to the school I had to explain multiple times what had just happened and every single time I cried. I couldn’t hold myself together at all. So begun my journey into being a heart patient.
Heart Story: Part 2
And now this is the part that covers from when I was diagnosed to when I went to college. It’s confusing because it was a huge chunk of time, 5 years to be exact, so there are many little things that happened, but I can’t say that anything extremely major happened. I continued to get more and more sick. My chest pain continued to get worse and worse.
I was heavily bullied in middle school. I was the girl who overachieved, so I was the girl with the terrible nicknames. Kids can actually be more original than you would think when they come up with insults to throw, and unlike the saying, words do hurt me like sticks and stones. My skin wasn’t as thick as it is now. Now, you can throw into the mix that I lost the one thing I had that made people respect me, my soccer skills. Was I at a complete loss? Yes.
This is where I really kind of stopped talking about my heart issues. I have sat down and really thought about it, and I realized that from the time I was in middle school I didn’t really talk about it because I didn’t want anyone to know I was different. I wanted so badly to be normal that I tried to ignore the problem completely. This continued throughout my high school years.
My teenage years were really hard. I had to figure out how to live with this invisible disease that nobody my age ever really understood. My friends tried. I will love them every day for the rest of my life because they tried but this is one of those things that you really have to go through to understand. I would struggle with little things as I got worse. Little things that people take for granted like being able to walk and talk at the same time. I had to choose either to walk or to talk because I didn’t have the breath for both. Walking up a flight of stairs was like torture. I had to rush because there were people behind me trying to get to class, but when I would try to keep up with the crowd, I would end up in my next class checking my pulse and sweating like I had just run a marathon. I can remember two specific occasions of this happening and being completely mortified by it. I laughed it off of course and made jokes but I was drowning on the inside. By senior year, I had to have all my classes downstairs because taking the stairs was just out of the question. I was really very sick, but I tried to just be as normal as possible, never speaking of my heart unless I absolutely had to.
I had so much anger about my condition that I never let anyone see. I would cry at night just asking God why he had chosen this for me. I questioned my faith so much that I didn’t even want to get confirmed. My parents of course made me, which I am very grateful for now, but I can’t say that my heart was ever fully in that process like it should have been. I was too taken with my own self-pity and self-loathing. The extra 50 some pounds that I gained from not doing physical activity really didn’t help the whole process. I was a mess on the inside. I constantly kept depression at bay, and my embarrassment I wore on my sleeve.
Events that I can clearly remember from this time are things like when I was first told I could need a transplant at some point in the future. My restrictive physiology, which wasn’t there all the time at this point, made an appearance in one of my echocardiograms, and Dr. Towbin made the grand announcement one day that the only way to treat it was transplant. He knew it wouldn’t happen right away but somehow he knew.
Another big one would be the time I was told I would probably never get to carry my own children. Yeah, I kind of slipped that bomb on you out of nowhere. I had to give you the same impact that it gave me right? I was 16. I didn’t even know if I wanted kids at that point, but of course, it still hit pretty hard. That I can say was a pretty low point for me. My mom, the ever level head, pointed out that it wasn’t just that my body couldn’t handle holding a baby to term, but also that I would not want to pass on the gene, and with a high likelihood of that happening, it would just be irresponsible of me. Still, I was just a baby myself and I wanted to grow up and have a family one-day. Luckily that baby grew up and realized that there were options still.
The last one is more of a personal low for me. I can only include this story because I want to make sure that it never happens to any other person. I can say with all certainty in my mind that if I didn’t have the support system that I do, I would not have been able to over come this pivotal moment and I would never have gotten the help that I actually needed. It came around the time that I was 17 and I was starting to be more vocal about my chest pain. One day, I was having a bit more of a hard time than usual. My mom being the worrywart she tends to be took me to the Emergency Room. After being stuck like a pin cushion and the ER doctors not finding anything wrong, someone asked me if I thought the pain was all in my head. They basically asked me if I thought that the physical pain I was going through was actually something I had made up in my mind. Fortunately, I had the best nurse advocate that was able to set the record straight with these doctors. I still questioned myself in the back of my mind every once in awhile. It wasn’t until after my first transplant that I got my answer… but more on that in the next section.
At 17 in a preventative move, my doctors decided that I needed to have an AICD (Pacemaker/Defibrillator) placed. I missed some school and when I came back, everyone around me treated me with kid gloves. Again, not being able to see past myself, I was embarrassed and felt shameful about the whole thing.
Finally, I graduated high school and a few days later my wonderful, sweet little Noah had an episode.
So let me explain something really scary about HCM and HOCM… there are two options for how a bad situation can go. Either you have an “episode” or you have a sudden death occurrence. Luckily my baby brother had people who knew what to do around him, and they got him the medical care he needed fast. I remember being more scared than I ever had been in my life flying to Miami. Noah ended up having a Septal Myectomy. This procedure is where a piece of the septum is cut out, making it easier for the blood to flow through the heart. Noah came through and left better than before. He is a little trooper my Noah.
I know your question. You are trying to reconcile the Gaby that you met and knew with the angry and angst-y Gaby that I am describing. That’s simple. I never for a second showed how deeply unhappy and angry I was. That’s not how I was raised. My mother is one of the strongest women I know. She raised us to smile for 10 minutes every morning because it is supposed to make you have a more positive day. She raised us to take a shower and turn around our attitude. She raised us to fake it till you make it sometimes. She raised me to keep on going even when it was going to be a bumpy road. See, I may have been angry but that wasn’t the fault of anyone around me, so I would never take it out on people that don’t deserve it. My mom taught me positivity was the only way to take on life. I told you that I can confirm she is an angel.
Something about my being 18 seemingly opened the floodgates as far as my heart issues went. There had been some flux at Texas Children’s in the Heart program because Dr. Towbin had decided to take a job elsewhere and they were transitioning. I was caught in the undertow. I didn’t feel like I really had a place there. I don’t want to say that I didn’t feel safe there, but I definitely did not feel understood. I would leave every appointment upset about something. Now my story sounds a bit like a fairy tale I realize. I divert back to my more basic story telling skills because the details are a bit fuzzy on exactly how they went down. I don’t remember the exact name of the doctor I was seeing at Texas Children’s because at the time they seemed to be changing every week. For the sake of the story we will call him Doctor A. Well, Doctor A brought in Dr. Franklin because he was worried about my Restrictive physiology. Dr. Franklin was a cardiologist from the adult world. I needed to get a right heart catheterization done and because I was 18 I had to do it on the adult side. Let me tell you, that cath was a MESS. I’m going to hit you with a list again…
· They went through my groin. Now, to explain, this means that they used my artery in my leg to get access to put a long metal thing into my heart to measure pressures…while I am awake. I am sedated sure, but this was the first time I was not put completely out and let me tell you, it hurt.
· I had a seizure. Yes, an actual seizure. To this day, they can’t explain why that happened. They blamed the sedation medication I used. R.I.P being able to get good sedation in my life.
· I found out that the pressures in my heart were ridiculously high.
Now, if I had been under the age of 18 they would have immediately listed me for a transplant at the children’s hospital. The fact that I was 18 meant that I would immediately have to switch over to an adult cardiologist to be evaluated and then decide what the next move would be. The difference between adult cardiology and pediatric cardiology is simple… in pediatrics you go by the numbers only, in the adult world you look at the person. I looked every bit the relatively healthy 18-year-old. Therefore, I didn’t get listed right away when I moved over to adult cardiology. I would not, however, change a moment of it. I moved over to the hospital and the team that has changed my life two times over. They saved me. Not just when they gave me two separate transplants and multiple times when they treated my rejection but they gave me a home and people who I love. I really hope that one day they read this so that they can know how much they mean to me. Pause for a minute because I am crying now. Lol sorry. From the moment that I met Dr. Jerry Estep, I never again felt like I had to question how bad I felt. He was always on my side and always listened to everything, never making me feel like I was exaggerating. I have never left an appointment with any of my team feeling like they didn’t care. They will never know how much that meant to me. It helped heal some of that anger I was talking about earlier. It helped me see that I wasn’t crazy. I will tell you everyone else on the team when they come into play but I just had to get sappy right there. Anyway. I was ripe and ready to head off to college. I had gotten into my dream school and I was ready to kick off my life. I even had the go ahead from Dr. E because Austin was so close.
I started school and everything seemed great. Unfortunately, not everything was so great. Austin is a beautiful, vibrant city… but it is also super hilly. I want to say so many of the great things that happened here, because they did. I lived my life. I made some lasting friendships and memories. I will let you all in on a little secret of mine… One of my greatest pleasures in life and one of the things that makes me happiest in the world is dancing in the middle of a deserted street at night. I danced as often as I possibly could. But, I was getting my butt kicked by walking to class every day. I was getting my butt kicked just living I was wearing down my body and it caught up with me. In November of my freshman year of college, I was listed for transplant.
I moved home that December. My family didn’t know if I would get a transplant in a few weeks or in a year. We were in a holding pattern.
Heart Story: Part 3
I decided not to let my whole life get derailed by this process so I enrolled back in school; nothing full-time, just to make sure to stay on track. That spring turned into that summer and then that summer into that fall. The tricky part of the process of waiting for a transplant is actually waiting. I was listed at a status 2, meaning that I was at the lowest possible active status. We kept on waiting. Finally it got to the point that I decided to go ahead and enroll in another major university. That spring I enrolled at University of Houston. This, as most of you know, is where I ended up graduating from even after receiving my transplant. God finds ways to put us exactly where we belong because I was supposed to go to UH. I don’t think that I have ever sat down and realized so clearly how perfectly my life has gone in its imperfection. I guess there is a lesson there. I am perfectly imperfect. Back to the story though, I swear I am the queen of tangents.
Waiting for transplant almost drove me crazy. The symptoms that I had never seen so much in my life were hitting me with full force. I wasn’t even able to stay on my feet for an hour. It would exhaust me. Can you imagine that? Standing, and just doing something benign or doing nothing at all, making you so tired that you have to go take a nap. I wondered many times if I could keep living that way for the rest of my life. If I had never gotten my transplant…I don’t know what I would have done. Another thing that kept me up at night crying; bet you didn’t know that I was so worried about it. I tried my absolute hardest not to show it.
I was feeling a bit under the weather one day. Having more pain than usual and some irregular rhythms. My mom and I decided it would be best if we went into the hospital. Once we got to the Emergency Department and actually got into a room, we found out that my heart was not just giving me trouble: I was having a small heart attack. There was not much the Heart Failure team could do about it, seeing as it was already over and all. I stayed in the hospital for two days and they let me go home, but not before telling me that they had decided to move me up on the list. I was officially a status 1B. This is the first time that my team proved to me that they were really looking out for me because they got special permission to move me up on the list. They had to write to UNOS and the whole shebang. I couldn’t believe something was actually happening after three years. I was terrified but also I was at peace because I was so grateful to have the knowledge that I wouldn’t have to live with my pain for the rest of my life. Someday, things would be different.
So I went back to my daily life. I made the decision to not go back to school that semester. My family and I had made this decision because I really was just too sick to go to class and keep up at this point. It killed me to look at a time of doing nothing basically all day, but its what I needed. I was extra careful about things. I completely gave up alcohol… (No mom, I wasn’t drinking anyway so I don’t even know why I said that…Okay fine, but only once in awhile. LOOK I WAS 21 OKAY?? I’m sorry) and I stayed in town. About a month later, my roommate asked me to go with her to college station to watch a football game. I loved going to these games because she was dating a guy in the Corps of Cadets at the time and we got to sit really close to the field and SURROUNDED by guys in uniform. I decided that it had been so long and I would only be about an hour and a half away so there was no harm in going to the game. Plus, my best guy friend Jonathan was going to the game and driving down the same day. All the pieces were falling into place for me to go to the game.
The day arrived and we left for the game. We were running a bit late because the night before, we had stayed up a bit late watching a movie. When we arrived in College Station everything was perfect. I was looking super cute in a new dress I had bought for the occasion. I had texted my friend Christina about meeting up afterward at Northgate, a popular area for after most A&M games. Jonathan and I met up with our friend Allison and her boyfriend at the time to get into the correct section.
About halfway through the second quarter I got a weird feeling. I hadn’t looked at my phone in awhile because I left it in my purse. I didn’t have pockets on my new dress. I got down from the bleachers to look at my phone and I saw a number had called that I didn’t recognize and also I had two missed calls from my mom. I knew what the message was going to say before I even listened to it. I pressed the play button and confirmed my suspicion. It was Methodist calling. They had a heart.
I called back my mom in total shock. She was crying when she answered the phone. I remember asking her if it was real. She said “Yes baby, It’s real. You are getting a heart.”
I frantically turned to my friends and told them what was going on. Everybody was freaking out, obviously. Jonathan isn’t the best at handling stressful situations so he ran up the stairs, not knowing what to really do. Allison helped me walk up the stairs.
Jonathan proceeded to push me through the crowd saying, “She’s pregnant! She’s having a baby! We have to get her to a hospital!” I stopped immediately and told him in no uncertain terms that it was unacceptable for him to do that. He laughed and then started literally bouncing up and down saying, “She’s getting a new heart! We have to get her to a hospital!” This lasted for about 2 minutes before I told him to just run out and get the car. The gate attendant sitting by the area we exited yelled out to him reminding him that there was no re-entry. Jonathan yelled back “She’s getting a new heart!” as he ran by. The gate attendant looked at me with the most confused look on her face and said “Wait.. really?” I shook my head yes with a smile and she looked totally taken aback. As we walked out she yelled “Good luck with that!” I can’t imagine how pregnant women feel when their husbands make a big deal when they go into labor, but Jonathan’s wife is going to have one heck of a time. At that point we scrambled a bit to figure out who would take me home and it ended up being Jonathan that drove me home. To fully understand this, you have to know something about Jonathan’s driving. He drives like an 80-year-old woman. He drives SO. SLOWLY. It took the full 2 hours to get home that night. I got the call at 9ish and didn’t get to my house to pick up my things and see my siblings before going to the hospital till 11:30ish. Jonathan was so nervous the whole time in the car that he had to have the music down and was gripping the steering wheel as if it were his life-source. Funny how that works, in a time that I should have been freaking out it was not me that wasn’t prepared, it was the people around me. I sent out text after text and I called all the important people. My dad caught the next flight out of Haiti, my Grammy flew and the rest of my family packed up their cars and left immediately. When we got to the hospital I was expecting more excitement than I got. I realize now that they do this relatively often so my transplant wasn’t some crazy big news. We waited till the next morning because there are actually procedures they have to go through before the transplant happens but they have to wait till you are actually in the hospital to do. Dr. Ashrith Guha, another doctor on my team, was the one who decided to go ahead with my transplant. He is an amazing man. Funny side note, he always seems to get the brunt of my mother’s emotional side. Any time she cries to the transplant team, he always seems to be the doctor there. Poor guy. He is so gracious about it though. We just love him for that.
I went to the ICU and my mom and godmother got me wiped down with Satan’s cloths (Clorahexidene wipes, I hate them, obviously) and then I was ready to be wheeled back. My Grandpa likes to tell the story that when I was being rolled back you could just see my hand off the side of my stretcher and I was putting up the peace sign because I told them “Peace out!”
I got into the operating room and it was cold, like always, and it smelled like pickles. When I moved over to the operating table one of the nurses asked me what I was there for that day. When I said heart transplant, he congratulated me. This always makes me laugh because he sounded almost surprised when I told him. The anesthesiologist quickly put me off to sleep.
I woke up in the CVICU a day or so later. I couldn’t believe it. No more pain in my chest. I wasn’t even feeling pain from the surgery. I was so happy that nothing could touch my happiness. I was only in the CVICU for 3 days. I have some funny stories from that time, but I will save them for later posts. I then moved to Dunn 4. This is a transplant floor at Methodist Hospital. I was there for 8 days. Again, I have some funny stories from that time, but I will keep those to entertain you in the future. I will say though, I was happier than I had ever been in my life. I finally saw a future; a future that didn’t include constantly worrying about pain and shortness of breath. Something I didn’t know but I quickly learned was that you feel good instantly after transplant. It’s a dramatic difference. I was ready to face the world with new vigor and renewed health. I felt for the first time that I had options again, I could live again.