Fawzia and the heart transplant: 10 years later

Today is my 10th heart transplant anniversary. I wanted to make grand plans for myself this year considering it's a big milestone, but it turns out that big plans aren't really my thing. Too much effort and energy is required and I am incredibly lazy. 

Ten years ago, when I was sixteen, I was successfully transplanted with a healthy donor heart at Johns Hopkins. Truthfully, I never envisioned my life turning out the way it has. Honestly, I didn't even know if I was going to make it to another year because of what happened last year in December. That's the thing about being a transplant recipient, there is a lot of uncertainty and sometimes really harsh reminders of your own mortality.  Last I knew, things had improved since then, but it's been several months since I've been seen and I've had a rather stressful past several months where I've not taken great care of myself. I can only hope that I haven't done too much damage. I'm terrible at establishing a routine for myself, but it's something that I need to do yet again and try my best to maintain. 

Oddly enough, for such a big transplant milestone, I don't have much to say. I wonder if I've said it all already in years past and that's why I can't quite find any words to express myself today. Today is special and should feel special, but somehow I'm not sure that it is. Apparently, this is the first time that my transplant anniversary has fallen on a Wednesday. That's got to count for something, right? 

I think I'm just going to ramble and see where it goes. 

It's an understatement to say that life after a transplant is challenging. For me, so much of the challenge is in knowing how much of a cost burden there is on my family (and to a lesser degree of guilt, on the healthcare system). Medication is not cheap. Procedures are not cheap.  Healthcare often feels like a luxury and not a basic need based on just how heavy the expense can be and truly is. The other thing I still struggle with is reconciling my mental health with transplant. Transplant is a gift, not a cure. The typical response to receiving a gift is gratitude. And I am grateful, but I don't always exist in a place where I express that gratitude. But I always acknowledge in my darkest days, when I am not okay at all, that my anchor to this world is my donor's gift (and her family's decision). If nothing else, I am grounded by survivor's guilt. 

Right now, I'm in a state of transition in life. Just beginning to get my bearings, which is a painful and awkward experience to go through. I have wanted so badly to give up many days, but I know that I need to give myself time. With time comes experience and hopefully a sort of firmness and air of confidence in the decisions that I will make. But for right now, I have to remind myself that I am not alone and that it's okay to ask for help when I am unsure. 

I used to always believe that I hadn't grown as a person and I still hold that belief, especially when it comes to "doing adult things" like having a 401k, a significant other, buying/owning a house, etc. I've always felt behind in life compared to my peers, like somehow I missed the boat to success or happiness. Although my peers and I are at entirely different points in our lives, in recent weeks and months, I've realized that I'm not the only one hurting. I'm not the only one going through change that feels painful and awkward. I'm not the only one doubting myself. But I might be the only one not cheering for me. Someday, I'm going to cheer for me like others do and really mean it. 

Most of that isn't coherent and doesn't have much to do with transplant, but happy 10 years to me nonetheless. Eternally thankful to my donor and her family, my family, my friends that I've made along the way, and God. 

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Today is a good day to live.

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"Don't take your organs with you to heaven, heaven knows we need them here." Visit donatelife.net to register to be an organ, eye, and tissue donor. 

"they're your artery thieves"

This is my annual heart transplant post, almost 2 months late. The way that this is going to read is entirely different from what I had initially wanted to say back in October, but things change and we get hit with unpleasant surprises and shocks. I have no good way of segueing into what I'm going to say/talk about in this post, but know that I've debated a lot about whether or not to continue sharing so much of myself. 

On October 20th, it was my ninth heart transplant anniversary. Exciting, right? Except that this year, the day was more or less just like any other day of the year. That's not meant to sound accusatory. It was still special, but just a little less so because that's how this year has been. Does that make sense? I'm not sure it does, but what I mean is that I'm grateful for all of the love and for any thoughtful gifts I received this year, but the day didn't feel as special as it normally does. 

This year has been strange and difficult in a lot of ways. For me, the hardship has come as the curtains of this year begin to close. I (almost) always have some kind of procedure and routine tests done every year in December. I received some crushing news this year in the procedure room surrounded by very kind and reassuring health care professionals. I've never been so in awe of physicians and how seamlessly they deliver results to patients until recently, until the patient was me and I couldn't stop crying. I hate the number 18 now. And the number 9 too. Maybe that's a bit dramatic, but it's where my mind was 12 days ago. 

I had my annual clinic appointment recently. All of the imaging was apparently fine, except for what they found on my left heart cath. A 75% narrowing of the left anterior descending artery (the widow maker). When you hear that for the first time and subsequently every time after, it doesn't feel good. Simply put, I freaked out. I thought it was my fault and probably always will. I don't even know if it is my fault or not, but I guess placing blame here doesn't matter. I felt my world crashing down. I felt guilty for everything. 

More officially, what I have is apparently referred to as cardiac allograft vasculopathy (CAV), which from what I understand is the transplant version of coronary artery disease (CAD). The way it's appeared though doesn't seem to meet the criteria of CAV to me, seems more like a CAD picture, but I'm almost not an expert so what do I know? Overall, not great at all, especially at 25. Bleak and depressing to be honest with you. I was ready to cry my eyes out at that appointment, but that didn't happen because my cardiologist didn't seem worried. That doesn't mean that he's not concerned at all. I thought it was a death sentence (because in a way, it kind of still is), but he just explained step wise what we were going to do to keep it from progressing. The silver lining in all of this is that I'm not symptomatic (but also not necessarily expected to be) and that it was found early (something two of my brothers who are physicians reminded me of). It's manageable. 

But still I wonder if it's something that I did or didn't do that caused this. My brother who is a cardiologist says that I shouldn't be so hard on myself, that there are a lot of factors that are out of my control. I vaguely remember hearing my cardiologist say something about how we don't know the genetics of the donor heart, but I'm not sure I understand what that has to do with it. But then I also remember that this heart, although it has been mine for over nine years now, it belonged to someone else first.

So, that's my story. I'll be honest - I haven't made drastic changes in my life really since hearing the news other than that I'm really determined to do my best to stay away from fast food and most processed junk (with the exception of some dairy, honey, crackers, and bread right now) and working up my nerve to get back into establishing a daily exercise routine. It's nice to be living at home because meals are freshly cooked and I know it's made with love and care without all of the excess salt, fat, oil, and sugar. No more foodie meetups for the foreseeable future, but do meet me for a walk somewhere, anywhere. It feels good to feel the ground beneath my feet. 

I thought it would feel insulting or embarrassing to receive that nine year celebratory certificate at my appointment, but it didn't. Nine years is a long time. I just wish it didn't feel like an ending. 

I am will be okay. 

I am still here. 

And will continue to be here for many more years to come, in'sha'Allah (God willing). 

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A transplant is not a cure, but it makes a world of difference for the recipient. Visit donatelife.net to register to be an organ, eye, and tissue donor. 

While you're at it, visit bethematch.org and join the registry. My medical history disqualifies me from ever being a donor, but maybe yours doesn't. 

Save lives, be a donor. 

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For the record, I blame myself

It went on and on, I let me lose

All the best, I made it through

It went on and on and on without you

One and on and on and on

["Birdcage" by Novo Amor]

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The title of this post is taken from a song called "Silvery" by Novo Amor.

When there is an organ donor, life springs from death

Today marks 8 years since I was successfully transplanted with a healthy heart at Johns Hopkins Hospital. It’s astounding how much time has passed and how quickly time ends up passing. I normally begin writing this blog post the day before, but for some reason I fell asleep early last night and woke up before 2am today so here I am writing some of it now... and here I am at almost 9 in the morning finishing it up. 

I always like to take time to reflect on what has happened to me since that day, whether good or bad. There’s been a lot of both over the past 8 years. Let’s try starting with the good since that’s what I struggle the most with. This summer I went to the UK and met some of my second cousins. It was a refreshing experience. I played mini golf for the first time while I was there and went to see the new Aladdin movie with Aminah. I got to see most of the places where my father used to live while he was in school and doing his post-doc research. When we got back to America, a few of my cousins and I went to this really cute tea shop in Brooklyn. I went to Houston, Texas, for a conference and survived the heat. Claire and I enjoyed many foodie outings and went to the farmer’s market in Leesburg a few times. Shameless plug: we have a shared Instagram now called clawzia_prn and everyone should totally follow us. I survived my hospital rotation and actually really enjoyed it. I’m in my third year of pharmacy school, taking on absolutely more than I probably should, but am somehow still standing upright. I've had many fun evenings with friends, watching movies, talking, and playing games. 

I’m always hyper aware that I probably sound like the most ungrateful person in the world when it comes to talking about my transplant because I think people perceive that I focus on all of the negative things that have happened. But I am grateful. I am grateful. Another year has passed. I’ve met new people, strengthened old friendships. I’m surviving pharmacy school. I’ve been to places I had only ever dreamt of going to. I’ve been on some nice walks. I’ve had many cups of chai. I’ve been on lots of foodie adventures. I’ve taken steps towards taking care of myself mentally and emotionally, something that needed to be done several years ago, but better late than never.

The bad things that come as a result of transplant or after transplant for me still haven’t really changed from years past. My transplant is not a cure. I live with a handful of other conditions in addition to transplant. I never know what exactly is causing the things that are happening to me and no one else knows either. It could be the stress, it could be the meds, it could just be that I’m unlucky in some regards. But I have a much better quality of life now than I did before my transplant.

Sometimes I think about what it would be like if my classmates had to write up a SOAP note on me. It almost wants to make me laugh because of how ridiculously complicated it would be for them, but I’d be interested in knowing what interventions they would want to make on my behalf. I always used to think that I was so complex of a patient that I could qualify being treated by House, but then I realized there’s nothing that he would find intriguing about me. And House only takes cases that are interesting, but I digress.

Sometimes it feels strange to still be here because I never once pictured being here in this moment, in this space, in this time. I never really pictured living long enough to make it through high school if I’m being honest. I look to the future a lot, I try to imagine it, but I don’t usually find myself there. I think it’s because I don’t expect to be there and that’s a reality for me. It doesn’t mean that I don’t hope to be there, but it’s more like me recognizing how precious the time I have is.

I contacted someone recently to find out if my donor family ever received my letter that I wrote when I was in college. They did. But I guess they didn’t know what to say or maybe they didn’t want to say anything. I don’t blame them though. Finding out that they got my letter and not hearing from them has been one of the hardest things to deal with and I haven’t really dealt with it. I’m sad about it, but there’s not much else I can do besides write again and see what happens. Maybe the time just wasn’t right for them, maybe it will never be right. Grief is a non-linear process after all. I don’t expect it to be any easier on them than it is for me after 8 years because it’s still not any easier on me even now.

Every year, I find myself missing her even though I never knew her. When things go wrong, I think about her and try to remind myself that I’m here for a reason. It doesn’t really help, I usually just end up crying more. I hope I get to meet her family one day so that I can tell them thank you in person and give them the biggest hugs. And if by some chance I'm not able to meet them, I hope they know how much their decision 8 years ago means to me. 

I've run out of things to say now. I just hope this post doesn't come across as sounding insincere because I am grateful for this second shot at life. I've been able to do so much, see so much, experience so much. I guess one thing that surprises me as I look back is that the way they decide who gets an organ is based on a bunch of criteria, one of them being how sick you are. I remember what it felt like to be that sick, to have made it to the top of the transplant list, and it's not a place I want to find myself again because it's scary and life is full of no guarantees. I was just really fortunate. Anyway, that was just something that popped into my head just now. 

I owe the biggest thanks to God, my donor family, my own family, and every medical personnel involved in my care until now. Thank you to the friends who have stayed by my side and to those friends who joined later on but have felt like they've been there from the start. Thank you to everyone who continues to be on this journey known as life with me.

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"Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope and terrible loss becomes a gift."

Please visit donatelife.org to become an organ donor today. 

The One Where Fawzia Celebrates 7 Years Post Heart Transplant

It's been a hell of a week, It's been a hell of an October. Despite all of the struggles I've faced so far this month and my constant complaining and feelings of being overwhelmed, there's still a lot to be happy about. This year is special, I suppose, because it's my seventh heartiversary. Seven years since I was successfully transplanted with a healthy donor heart at Johns Hopkins Hospital. Seven years.

When October comes around, I usually spend time thinking about her. Honestly, this year though, I've probably only thought of her a few days this month. I'm still eternally grateful for her and her family. It's been years since I sent my letter to say thank you, but I suspect that it didn't get to where it was supposed to go. Maybe I never even sent it like I thought I did. It's always sort of bummed me out that I haven't found them yet. I remember years ago wanting to meet her family. I would have a better sense of completeness and maybe her family would have more closure, maybe they've already got closure though. I don't know. I'm going to try again to reach out to them. I want them to know how much I treasure this second chance at life that she gave to me. I still hold onto this hope that I will meet her family someday. It would mean so much to me, it would mean everything.

A lot has happened in the past seven years. I don't know if I ever expected to still be here. Statistics are interesting, you know. I think they say that the survival rate of 1 year for heart transplant recipient is something like 80%. Obviously that percentage goes down year after year. I plan on breaking the record and being the heart transplant recipient that lives the longest, that's my goal anyway. I think it's a good goal to aim for. I've never been one for statistics though, not seven years ago and not now. People are so much more complex than that and to reduce us down to numbers feels like a disservice. I joked with BVT that I was gonna live forever, I've gotta prove those statistics wrong.

Anyway, a lot really has happened in the past seven years. I graduated high school on time. I finished college with a double major in biology and chemistry. I got my driver's license at 21. I got accepted into pharmacy school and survived my P1 year. And just like that, I'm a P2. It's surreal when I think about it. I've changed too, in small ways. Years ago, I used to not be so open about my transplant. I guess I had good reason for keeping quiet. It's not easy to disclose trauma, and what I went through is something I would never wish upon anyone. I remember being 16 and feeling so hopeless that I wanted to let go, I wanted it to end. I thought I was going to die anyway. I think back to those days and it's enough to make me cry. In the past seven years, I've met so many people that I've come to love and couldn't imagine life without. And I would never have met any of them if I had died on the table seven years ago. To my point though, I've become comfortable with my transplant and sharing my experience with the people around me. I have a habit of springing it onto professors, but hey what's a girl to do when she's in the cardio module and things feel so relevant. It wasn't like I was going to keep quiet forever, that's not me. I think it ends up surprising a lot of people when I tell them.

Sometimes, it's hard for me to acknowledge that what I went through was traumatic because to me it doesn't fit the mold of what people traditionally think of trauma to be. I was reminded by BVT that undergoing a transplant is indeed a traumatic experience. I often forget that it is, but I think it's just because I've forgotten so much of what happened to me in the before time and shortly thereafter. The brain is funny like that. I wish I remembered more, but I think I remember all of the big points. I remember the day I was told that there was a heart for me, I remember saying goodbye to my family the next morning and crying. I mean, maybe it wasn't that we were saying goodbye, but no one knew for sure that I was going to live. So many things could have gone wrong. I carry that with me. I carry that constant worry that someday something is going to go so severely wrong that there won't be any chance or hope for recovery or survival. Every lab test I go for, I wonder if this is the one that's going to lead me into a diagnosis of diabetes or if this is the one that is going to show that my kidneys have finally given up on me. Every time my throat feels funny or I have a GI issue, I have to wonder if my heart is failing. Every biopsy I've had, I would secretly worry about too. I always wondered if they were going to find me rejecting my heart. It's happened once several years ago, but it was shortly after transplantation so it wasn't a huge surprise, I guess. I live with this worry everyday, but am fortunate enough that I don't usually consciously think about it.

The thing that people don't understand about transplants the most is that it's not a cure. I live a much better life now, of course, but it's not a cure. It never was and it never will be. I have at least three complications that are potentially due to transplant. Three more conditions that I live with on top of being a transplant recipient, three more than I wanted. I remember the days when I took 20+ pills in a day, I remember the days when I was so happy to find that I only had a handful to take. Nowadays, I probably take somewhere around 12 pills. It's not great, but it's a small price to pay if I can be alive and upright and well. Maybe at some point in my lifetime, I can have a heart grown from my own cells. Maybe I won't always need the pills. But until that day, I'll be adherent as I have always been.

I'm taking a stand for myself at last. This upcoming week on 10/25, I'm opening up to people who don't know anything about me. I'm letting myself be vulnerable so that they can learn, so that they can know, so that they can hear my story. This is my first step. And where I go from here is uncertain. I hope everyone learns something from what I have to say because this is really all I have to give. This is the only thing that I can offer. This is the only impact I can make, the only impression I can impart upon people, the only piece of myself that I will ever share so willingly. And I hope I can do it justice for myself and for her. Two souls, one heart.

I'm incredibly fortunate to be where I am at in life. Seven years. The scar running down my chest is the proof that I didn't dream this up. Life is beautiful and chaotic, and it's enough. I tell myself year after year now that while I continue to live with this heart of mine, I will make it a priority to love as many people as humanly possible.

I am grateful for every moment, all of them whether they were good or bad or somewhere in between. I am grateful to be here even when I don't act like it. I am grateful for her, for her family, for my family, for every healthcare provider involved in my care, for my professors over the years, for my friends, for my pharmily, for everyone I've met in the world of pharmacy, and for everyone who has offered a kind word, a smile, love.

Please consider becoming an organ donor at donatelife.net if you are not already one. It is perhaps one of the last acts of love you can perform. And I promise that it will be worthwhile, that it will have an impact, that it will change someone forever. It will mean the world to that little girl who can't breathe without feeling like she's drowning. It will mean the world to that middle aged man whose kidneys have given up. It will mean the world to that 25 year old who has been waiting for more than a year. And it most definitely meant the world to that teenager who thought she wasn't going to make it. But she lives. I live. Because someone decided it would be better to donate than let their loved one's organs go to waste. And that has made and continues to make all the difference. 

My Heart Transplant

I've blogged about this several times already, but as it is that time of the year again, I feel compelled to continue my tradition of blogging about one of the most pivotal moments in my life: my heart transplant. Because I've blogged about this so many times, I'm always unsure of what more I can say or add to the past memories I've shared about it. I don't talk about it often enough in person. And maybe, it's time to change that.

So for everyone who's joining me for the first time for this heartiversary post, I'll share a very brief overview. When I was 15, I was diagnosed with dilated cardiomyopathy, essentially a condition in which the heart is inefficient at pumping blood. And, well, it's kind of important for the heart to do its job properly or else bad things happen. Treatment didn't work for me and I got progressively worse, eventually making it on the transplant list at status 1A. It's a little strange though because I knew when I was diagnosed earlier in 2011 with dilated cardiomyopathy that I would need a transplant. I don't know how I knew, but I knew. And I struggled with the implications of what that would mean. Could I live knowing that my heart wasn't mine? And then it happened. On October 20th, 2011, at the age of 16, I was given the gift of life: a new heart. And I lived, but it took me time to emotionally accept this heart that beats inside of my chest as my own. This blog post is to commemorate and celebrate my sixth heartiversary.

Was it painful? Yes. Physically, emotionally, and mentally. It's the most physical pain I've ever experienced in my life and one of the most emotionally exhaustive events in my life. With every year that passes, I remember less and less of what happened. And honestly, I'm not sure that my memories are true anymore. Trauma is something strange because your brain blocks out a lot of it, but it doesn't block out everything. My experience was traumatic and it took someone else telling me that for me to realize it. It's a different kind of trauma, but still trauma. I suppose that's why I don't remember how it felt anymore. I remember a few big moments, like when I was told that they had found a heart. I remember some of the smaller ones too, but only vaguely, like watching the Game Show Network (GSN) all day.

My past posts about my transplant have not always been positively framed and that's because I want people to understand and know the truth. I've been incredibly fortunate to have received a transplant, but it's not a cure by any means. I'm incredibly grateful because I have a much better quality of life now. At the same time though, I'm supposed to be more cautious, especially since I have a suppressed immune system to stave off rejection of my heart. This is why I often say that I can't afford to be sick.

Transplant is still a really emotional topic for me and I think it always will be. Sometimes, I have a hard time believing that I'm still here. Some days are so wonderful that it feels like I'm dreaming. I was 16 when I received my transplant and I'm 22 now. Despite all of the time that has passed, I'm not sure I did fully come to terms with my transplant. It might also just be me overthinking things and making mountains out of ant hills. Who can say for sure? Lately I've been wondering if I deserved my transplant. It's a terrible thing to wonder, but I think I only wonder that because I'm letting life influence me in not so great ways. Someone thought I deserved a second chance at life, maybe it's time for me to see it their way. I don't want anyone to think that I'm not grateful. When I feel really down, I sometimes think of her and I cry and then I move on. I've been through too much to give up on myself.

Let me not leave this post without some positivity. I've done a lot of things over the past 6 years because of my transplant. I graduated high school and college. I'm in pharmacy school with some of the most wonderful and lovely people this world has seen. I got my driver's license at 21. I got my first real job in community pharmacy and have been employed there for a little over 2 years now. I live away from home in a city. And I'm cautiously happy these days.

Not many people ask me about my transplant, but I don't mind if they do. In fact, I wish people did ask me questions. But that is mostly on me. While my transplant is not a secret by any means, I'm not to the point where I use it as a conversation starter. Perhaps it should be a conversation starter. I have often thought about using it to open conversation, but I also don't want to make people feel uncomfortable or feel like they need to pity me. I don't need nor want pity, just love and acceptance like everyone else. When I was younger, I always wanted people to have a surprised reaction when I told them about my transplant, but the truth is that a lot of people don't have that reaction or at least they don't express it if they do. I think I used to want a surprised reaction because it would usually mean that people would ask questions and take an interest in me. I guess you could say that I appreciated the attention and always sort of have. But I have also always been the type of person that needs extra love and care for whatever reason. My transplant is one of the few things that I will always share freely about myself. I welcome curiosity and questions. And as I move forward in life, I'm realizing that my education has the potential to put me into an incredible position of advocacy and maybe even an opportunity to help others like myself. And I want to be here long enough to be able to achieve that dream. So the goal is to be the longest living heart transplant recipient obviously.

Please consider becoming an organ donor at donatelife.net if you are not already one. It is one of the most selfless acts of love you can perform. Someone else's selfless act of love saved my life. Your selfless act of love could save someone too.

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Note: The title of this blog post is modeled after the episode titles of the medical TV show, Scrubs.

"It is infinitely better to transplant a heart than to bury it to be devoured by worms"

Happy fifth heartiversary to me! (Or as Dr. Kite referred to it yesterday-"have a heart day.") It's hard to believe that it's been five years since I received my heart. I owe my very existence today to my donor family. Without their difficult decision, it's hard to say whether or not I'd be here today. Of course, I also have to thank the wonderful cardiology team, nurses, and other medical personnel I had at Johns Hopkins-specifically Dr. Scheel, Peggy, Kyle, Mike, Verna, and Dawn. I hold a lifetime of gratitude towards my family for their love, prayers, and patience. To the friends I held dear at the time, I thank you as well for your love. And finally, thank God.

It's strange to try to look back and recall the way things were five years ago. I don't have the best of memories for all the obvious reasons-people tend not to remember traumatic events. I was looking through my main email account yesterday and it's like I was reading about someone I didn't know. Rapid-ish weight loss, an inability to eat without feeling the need to throw, an inability to take medication because of that. All of those awful things among many others. Who was that person? I guess it sometimes surprises me that I was dying at 16. I have the scars to prove survival. Six scars in total. The biggest scar running down the center of my chest, also the same one that makes me cry from time to time when I become really aware of it. I wouldn't wish the way I felt or what I went through five years ago on anyone because it's scary, it's heartbreaking, it's traumatizing, it's everything that so many people are afraid of.

As a heart transplant recipient, life can be really hard. It's not easy to accept that your continued existence is because of someone else's loss. I have ugly days where I feel guilty for still being here. I feel guilty that my donor isn't here but I am. And I feel that guilt because I am unsure of whether or not I deserve my place in the world. And all of that makes me feel sad because even though I never knew my donor (and never would be able to), I know she wouldn't want me to ever feel guilty. I keep realizing time and again that I've been very well loved. And with all that love from so many people, feeling guilty becomes so silly. I am so loved, even on the days where I can't see it clearly. I am so loved. Thank you for loving me on days when I could not find it in me to love myself.

Between this heartiversary and last year's, I got my driver's license, survived a summer of constant research and work, and presented at a research conference. I have a bit of a headache right now so I can't think of any other things to add, but I'd say that's not too shabby. I am incredibly grateful to still be here on this Earth. To live and love people for another day, another month, another year. It's wonderful. 

Here's to my fifth heartiversary and hopefully many decades to come!

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To my heart sister, Millie-our Dragonfly family misses you. It won't be the same without you when all of us get back together. But we will honor your memory by being there for each other and holding our own against whatever obstacles we may face. Love you always and forever. Rest peacefully, friend.

"When there is an organ donor, life springs from death"

Happy fourth heartiversary to me! I make it a point to try to write a blog post for each year that passes and this time I'm not looking back at the old posts for any so-called inspiration. I'm on fall break right now so it means that I have time to be able to reflect and write, but doing both of those things hasn't become any easier considering the subject at hand.

It's a little morbid to lead off with, but I vaguely remember hearing from one of my cousins a few years ago that I looked like I was dying during the time when I was waiting for a heart, or something to that effect. To clarify, one of my cousins was relaying that comment from one of our other cousins so it wasn't something that I heard directly while I was waiting. And, well, it was true. I was dying. I can't look back and say that I wasn't. I couldn't even eat food without feeling an overwhelming urge to throw up. But then most amazing thing happened.

I'll never forget that day. October 19th, 2011, Dr. Scheel dropped by my room. I remember saying something along the lines of this to her: "So, are you here to tell me that there's a heart?" And then the twist came when she said yes. And then I asked her again because I didn't believe her. After she left, I cried and hugged my favorite nurse, Kyle, who just so happened to be taking care of me that day. He told me that he was so happy for me. And because of what happened that day, a 16 year old junior in high school didn't die. A daughter, a little sister, a niece, a cousin, didn't die. I didn't die. By the grace of God, my organ donor and her family, and the incredible transplant team at Hopkins, I lived. Not survived, but lived. I suppose it should be living rather than lived though. Surviving and living, although synonymous, are two different things. And I will be forever grateful.

I don't express my gratitude nearly enough as I should because life returned to what we'll call normal, but I am grateful. I've had my fair share of days where I really do want to give up, but there's always one thing that anchors me above all else (besides religion, family, and friends) and that's my donor. To this day, I don't know anything about her. But I hope that will change in the future when I reach out to her family once more. If anything at all, I just want to say thank you in person to her loved ones because their decision matters just as much as her choice to become an organ donor did.

To everyone who has helped me reach this day in my life, thank you and I love you. Here's to four years and decades more to come!

Dragonfly Retreat #3

This past weekend, I attended Dragonfly's third teen retreat. Let me just say that it gets more amazing each year. I'm still surprised at how easy it is to reconnect with everyone. We spend so much time away from each other, but we fit together so effortlessly like puzzle pieces. We've also gotten really good at welcoming new people into the family.

We did so many different things this year. On Friday night, Derek, LeeAnn, and baby Emma kicked off our night with an introduction and silly (but fun) icebreaker. Most of our activities take place on Saturday. There was a scavenger hunt, which was absolutely crazy, but still a lot of fun. Come rain, sleet, hail, or snow, we always manage to get time to be outside. I went on the big swing (or the "Swing of Death" as it has been nicknamed) at least three times, if not more. The first time I rode with Becca^2. The second time I rode with Zoofy and Michelle. And the third time I rode with Kelly and Chelsea. And I chopped the rope each time. It was so much fun. I hope to increase my record next year. A group of us ventured off to the high ropes course, which I wholeheartedly passed on. I could barely get through it in dry conditions last year so I wasn't all that eager to try it in the rain. I also passed on the zipline because I didn't really feel like staying out and getting soaked for much longer. We all went to the guest house and had smoothies and kale chips. While we were there, we played a really fun game called "What's Yours Like?" At some point on Saturday, we went to art therapy and decorated pillows and drew in/on our own healing journals. We played the transplant edition of Jeopardy, and that got a little competitive. Earlier on in the day (on Saturday), Tanner, Sarang, and I led the "Risky Behaviors" session. If I'm being completely honest though, Sarang and Tanner did most of the work. Hunzallah was our prime example of what not to do. It was more conversational and casual, which was something that I think we all enjoyed. We also collectively discussed improvements that we can make for Dragonfly as a family and a team. (And if I'm being truly honest, it is going to take a lot of doing, but less so if we're all working together and helping each other out.) This morning, we played the transplant edition of the Game of Life, which was all thanks to Millie. (It was actually supposed to be my responsibility, but she picked my slack, which I'm both thankful and sorry for.) After that, we dispersed to either play in the gym or in the game room. I was going to play in the gym, but instead involved myself in conversation with Valerie, Tanner, and Becca, and later on Millie as well.

I keep thinking of what Becca said on Saturday night. She said that she knows when something isn't quite right with her because she's lost her spark. (I think it applies for her in a figurative and literal sense.) And if I'm being honest, I think I lost mine over this past semester of college, figuratively not literally. But it has returned and it'll stay for a while. I think I'm going to try a little bit harder to stay in touch with everyone, maybe even set up a video chat with a few people if we can.

I have a couple of regrets. My main regret is that I didn't take any pictures and refused to be in a lot of pictures, hahaha. That's relatively easy to remedy and I'll definitely be bugging everyone to take pictures with me next year. My second regret is that it's impossible to record and/or write down every funny thing that someone among us says or does. We had some pretty hilarious moments though, including "It must be something in the name" to the ranch dressing incident at dinner on Saturday night to Derek being hit on the head with a ping pong ball during Charlotte and Sarang's fierce ping pong game to the somewhat offbeat drum line this morning. There are so many moments that we share together and I wish I could capture all of them. I wish I could bottle them all up and let them free on my bad days.

Dragonfly means so much to me, so much that I don't know what I would have done with myself without it. I knew that there were other heart transplant recipients out there in the world, but I never knew that there were so many who were as young as I am. Before Dragonfly, I never knew about pulmonary hypertension. I'm glad that I'm more aware today than I was three years ago. It's a really nice change of pace to be with my Dragonfly family. I needed to get away from home and college and the retreat is always the perfect opportunity for that. I know that I can count on my Dragonfly family. Wherever I go, I know they're with me. And wherever they go, I'm with them. Nothing will ever change that. I love you all.

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A few little things to add: 

-To Justine: We love and miss you so much. You are in our thoughts, prayers, and hearts. Your Dragonfly family will always be there for you. 

-To Bre, Darby, Missy, Rachel, and all those who have previously attended the teen retreat, but were unable to make it this year: We missed you so much and hope to see you next year.

-Also this weekend, we had the pleasure of celebrating for two people very near and dear to me. On Friday night, we wished Millie a very happy birthday. And last night, Saturday night, we congratulated Tanner on his fourth heartiversary. Much love to you both. Here's to many more years to come. 

-If you have the time, please visit the Dragonfly Heart Camp website (http://www.dragonflyheartcamp.org) and like the Facebook page (Dragonfly Heart Camp Inc.) If you'd like to make a donation to Dragonfly Heart Camp, you can do so through the website. Thank you for your support. 

"Don't take your organs to heaven with you. Heaven knows we need them here."

Happy three year heartiversary to me. Three years ago today, someone saved my life. Of all of the gifts I'll ever receive in my life, none will ever surpass this one. There is no better gift than life itself.

Three years ago, there was a lot going on. I spent a considerable amount of time having to go to the hospital, taking numerous medications, and feeling in pain. I do still remember things that happened back then, but everything feels like such a blur, almost like a dream. (I blogged about those things in last year's reflection, I think.) I'm sure I would think of it all as a dream if I didn't have the scars to prove it. There's a lot that I miss from three years ago, most of which include some special people, particularly the nurses who cared for me. At the same time, there's a lot that I don't miss, there's a lot that I never want to have to go through ever again.

I've had a rough past couple of months and I'm still kind of in limbo with my emotional stability, but overall still thankful to be here. I don't wake up every morning feeling happy or thankful, and I wonder if that's a bad thing. It's probably not such a great way to be, all things considered. But I'm still human too so I hope that it's okay. Right now, I am happy and that's all that matters. 

I've become a lot more open with being a transplant recipient. It's a part of who I am so I make no efforts anymore to hide it away or be secretive about it. I think I used to believe that it was only something I should tell people that I'm close to, but that's a little silly. Of course, I don't run around shouting it at the top of my lungs, but it has come up. It's actually come up twice this semester already, once (okay, more like a couple of times) in public speaking and once in microbiology lab. Most people don't know this about me, but I like when my transplant comes up in conversation...or rather, when it can be introduced into conversation. (I think my favorite conversation about my transplant is probably when it was revealed to Dr. Gallagher in microbiology lab. I remember saying that my heart is not my own, that it was someone else's. Dr. Gallagher thought I was referring to being in love and joked about that. I got him pretty good by saying that my heart was literally not my own with a straight face. He got it after that and asked me about it.) I like being asked about my transplant, because it puts everything back into perspective for me. It helps me see where I was and where I am now. I'd like to believe that when people hear that I'm a transplant recipient that it gives them some kind of hope and will to live freely and love strongly.

This is the part where I say thank you. Without a doubt, I'm thankful to and for my donor and her family. I'm especially thankful to my wonderful transplant team and to all of the nurses who took care of me. Of course, I'm incredibly thankful for my family and my friends for their love. (Shout out to two of my friends who will always have a place in my heart, Tomy and Casey.) Even though I haven't been in touch for a long while, I still remember my DCM family and am grateful to them for their kind words and encouragement. And last, but not least, much love and thanks to my Dragonfly family for always caring. I love you all. 

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It is infinitely better to transplant a heart than to bury it to be devoured by worms.

-Christiaan Barnard 

Dragonfly Summer Camp

I've been away from home for days at a time before, but this time was a little bit different...

I went to Dragonfly's summer camp at Camp Fairlee. I technically went as a counselor in training, but I really ended up as just a camper. And to be honest, I still don't really know what I was supposed to have been doing anyway. But I had a wonderful time, one that I won't soon forget, one that I will cherish and hold onto forever.

Sunday was the first day of camp. It was a bit depressing to me. I felt so alone and awkward, even with my friends around me. I couldn't shake the feeling away. I wanted to leave and never come back, and I even considered telling Rhonda or Kathi that, but I didn't. I'm the kind of person that can give you my life story easily, but at the same time I'm also the kind of person that needs time to settle and become comfortable. That was the hardest part for me. When I'm around new people, I need time to show people who I am. It's like Maria said, I did become more confident by the end of camp. I wish I was that way from the beginning, but opening up to new people has never been easy for me.

Monday, Tuesday, and Wednesday were all so fun. We did so many things: climbing a rock wall to go ziplining, sailing, going on nature walks, singing and talking at the campfires at night, water games, swimming, arts and crafts, chatting at mealtimes, staying up late talking, having a talent show, dancing, singing camp songs at odd intervals, and a lot more. I didn't get to learn how to sail, but I did ride on a big boat. The late night walk that a select few of us went on was a beautiful night. The stars were shining so bright and brilliantly and each of us were at peace. The campfires were so much fun. I have to admit that the camp songs were really silly, but they grew on me. I never want to forget them now. I didn't go swimming, but I put my feet in pool. I love how so many people got into bracelet making, it made me happy. I only participated in the water fight against the Pocomoke boys. The water obstacle course with the slide seemed like it was fun, but I was sick of water and wanted to stay dry. We shared our stories with each other and learned about our counselors, we teased playfully and laughed wholeheartedly at each other's silliness. I never thought that I'd miss all of the things that we did, but I do.

Thursday morning was a mixed bag of feelings. I've always been the kind of person who changes their mind. I was so sure that I'd be miserable at camp, but I wasn't. I endured through a rough first day and found myself glad to be there. I was standing with Manesh, Kathi, and Nathan, just listening and talking when an opportunity arose or when a question was directed towards me. Manesh asked me if I had enjoyed camp and I said yes. I couldn't meet his eyes or anyone else's so I looked at the ground with a big smile stuck to my face. I asked Manesh and Nathan what they got out of Dragonfly. Manesh talked about how special each of us are and Nathan talked about our bravery. I told them and Kathi that bravery was never a choice for us. We had to be brave. I said that it was because it was all we knew being in the situations that we found ourselves in. When I said that, I didn't really mean myself as much as I did everyone else. I look at Gwen, our Harvard graduate with a PhD and honors, and think of how mature and brilliant she is. I look at Darby and I see how strong her will to live life and enjoy every bit of it is, how determined she is. I look at Coralys, one of Dragonfly's younglings, and I just want to scoop her up in my arms and hug her because she's been through so much for being so young and it doesn't slow her down at all. I look at all of the Dragonfly campers that attended camp this year and I feel warm and fuzzy on the inside. I'm so amazed by how wonderful each of them are and I'm proud of them for everything that they've endured. And I guess I'm also amazed that I'm one of them too.

My heart aches for camp, for my Dragonfly family and friends. I never expected to think so fondly of my experience. I miss it so much. I miss my friends and the fun that we had together. I miss the counselors and their accents. They have some of the most beautiful voices that I've ever heard. It was so entertaining to hear them using different words to describe things (paper towels are kitchen rolls, flashlights are torches, fanny packs are bum bags, pants are underwear, sneakers are trainers, sweaters are jumpers, etc.). I admire all of the counselors so much. They work so incredibly hard and cater to the needs of the campers so well. On Tuesday, when we had our last campfire, I remember saying that I don't think I'll ever be like them. And I'm not sure who it was, my memory fails me, but someone said that I will be able to do the things that they do. At this point in time, I don't know if I'm capable. There is one important thing to be said: the counselors are now a permanent part of Dragonfly's growing family and they always will be, even if we never meet again. I know that everyone else changed the lives of the counselors (I don't include myself because I don't have an impact on people), but the counselors changed our lives too. Everything about them makes me want to be a better person, a stronger person than I am. I hope I can be like them someday.

I liked being away from home and being with people who know what it's like to be me. Most of us take the same medication and have had similar experiences. Even though Gwen (she's a multivisceral organ transplant) and Darby (she's got pulmonary hypertension) are going through different things than the rest of us, I know that they understand what it's like and I hope and would like to say that I understand what it's like for them too. At the end of the day, it doesn't matter if you've had a transplant or if you've got pulmonary hypertension (or if you're the family member or friend of someone who's had a transplant or has pulmonary hypertension), Dragonfly is a family. And I'm glad to be a part of it.
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"I'm the mermaid of dirt." - Bradley

"...flop around like a dead fish." - Bradley

"Fawzia, your butt's wet!" - Bre
"Shut up, Bre!" - Me
(Later on, Bre tells me that she just wanted everyone to look at my butt. My DHC friends, gotta love 'em.)

"Everywhere we go
people want to know
who we are and where we come from
so we tell them
we're from Dragonfly
mighty mighty Dragonfly
and if they can't hear us, we sing a little louder"
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If you'd like to make a donation of any amount (even the littlest bit counts) to Dragonfly Heart Camp, please follow this link:http://www.dragonflyheartcamp.org/index.html. The donate button is on the right side of the page if you scroll down just a little bit. Thank you for reading and thinking of us.

Dragonfly Retreat #2

This past weekend I spent some time with a group of people that I regard as a second family, my Dragonfly family. It felt so nice to be back around people who understand what I've been through, what I go through, and what I will go through someday. It's actually really funny to me how well things worked out this year. At the end of the retreat last year, I honestly don't ever remember being extremely close to anyone. I mean, I really liked everyone, but I was still new and adjusting. I think it's true when they say that distance makes the heart grow fonder. As soon I met back up with my old friends from last year, we all just clicked right away. I definitely enjoyed my second year as a camper more than I did my first year just because familiarity was already established.

We did a lot of really amazing activities this year. I liked the activities better this year. We did yoga (which by the way has made me sore...I definitely don't use all of those muscles on a daily basis!), which was new this year. We also went ziplining and went on the giant swing. I went ziplining at the same time as Dr. Scheel. I went on the giant swing twice. The first time was with Bre and Tanner. The second time was with Dr. Scheel and Kelly. On the second time around, I pulled the blue rope to make us drop. I was so excited about doing that. The high ropes was new this year. Let me be the first to say that I'm all about adrenaline rushes, but high ropes are not my cup of tea. Unfortunately, I didn't realize that until after I got through it, but I'm still actually proud that I did it. High ropes aren't for everyone. Funnily enough, Darby loved the high ropes, but refused to go on the swing. To each their own. There was smoothie making and a little bit of winding down time after our adventures. And then we did karaoke of sorts, which was hilarious but it actually turned out being a lot of fun after we loosened up. The songs of the night, in my opinion, were "We Are Family," "Roar," "Blurred Lines," and "Gangnam Style." When "We Are Family" came on, pretty much everyone jumped up and let go. It was a really great Saturday and I hope we keep these activities because it's the activities that start to bring us together. Earlier this morning, we decorated little buckets and put a list of things we want to do in life inside of them. We essentially created bucket lists. (Except I didn't actually get the chance to make my list so I will get to that eventually. I thought it was definitely a cute and creative idea.)

Last year, I remember feeling sad because it seemed like mostly everyone knew each other and they did because they had all been going to camp together for years. I think it just started off with the CHOP kids and now other hospitals are joining in. I am really glad that I got the chance to go again. I got the chance to make new friends and reconnect with my old ones. I tried new things and had all sorts of crazy fun experiences. I really like being away from "normal" people and spending time with my Dragonfly family because they all know the single most important thing about me and they'll never treat me differently.

During the Dragonfly retreat, our souls were set free. They danced and sang and laughed. They hugged and comforted and loved. Most importantly though, they soared high into the sky, spread their wings, and flew.

We are organizers and planners who make the magic happen. We are living with transplants or pulmonary hypertension. We are stubborn fighters and lovers. We are Dragonfly and we are determined to make the best of our lives whether we are "normal" or not.

Dragonfly Retreat

I just had one of the most amazing weekends of my entire life, one of the best actually. I went to the Dragonfly Heart Camp Retreat at NorthBay in Maryland. I didn't realize that this weekend would make me feel so much better and hopeful. I met other heart transplant recipients, a lung transplant recipient, and pulmonary hypertension patients, in addition to some medical personnel. I thoroughly enjoyed the weekend. I can't even express how amazing it was for me and for my new friends. 

I knew that there were other transplant recipients running around somewhere, but I never could find them...until now. I met people who are more than 5 years out of transplant, even 15 years and more. It was incredible. It gives me hope for the future. I'm not a statistic. No one gets to tell me that because I'm a transplant recipient I'll only live for a certain amount of time, because of the people I met. 

I'm not going to be able to say everything that I want to say, but I'm going to at least try to say some more. I just have so much to say about this weekend. We all learned something and had the chance to discuss a lot of things. It was nice to be around people who understand me because they've been there. They know how it feels and so I don't have to feel alone in the world anymore. I have a strong support team now with people who truly do understand what it's like. This experience has made me stronger. I now take my medicine without my applesauce. I refuse to go back to it because if my friends can take theirs without something like that, then I can too. 

While at camp, I found myself starting to think 'Wow, your life was so much worse than mine,' but then I realized that we've all had it tough and that includes me too. I can't say that their experience is worse than mine or that they feel more pain than I do. We've all had it rough, but it's made us so much stronger and all the more motivated. We are inspirations to each other, because each one of us has fought their own fight and still continues to move on and push for another day to live. We all have a purpose in life. 

Feelings aside, this was an extremely fun filled weekend. There was ziplinig, the swing, rock climbing, indoor bonfires, smores, playing ping pong, table hockey, and pool, and just having fun with each other. The girls and I stayed up the second night to talk. It was a lot of fun. 

My thoughts are all over the place. I really miss camp. I miss my friends. I miss being able to take medicine with other people. I miss doing all of those fun activities. I miss having breakfast, lunch, and dinner together. I miss the story telling and the crafts. I miss everything. And I am a little sad, but I know that I'll see everyone again. Even if I don't, they're always with me because of the special bond we've created. No one can break that. Together, we are stronger. I'm not alone. 

It was a life changing experience.

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"Five heart transplant recipients, ten souls" - Derek 

"Shit's about to hit the fan" - Bre (She said something like this, haha)

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Link to a compilation of pictures and a video from Dragonfly: http://www.youtube.com/watch?v=Ljytvb264JU

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I've dubbed Johns Hopkins as JHOP since Children's Hospital of Philadelphia is shortened to CHOP. :)