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. 

---

Today is a good day to live.

---

"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). 

---

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. 

---

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]

---

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.

----

"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. 

Glassy-Eyed

I'm tired, but it's worse than usual, I think. I'd rather stay in bed under the covers than wake up and meet the day. I'm in one of those moods that I used to fall into when I was in undergrad. I thought I would feel better with October being over, but November feels just as heavy. I feel drained, I feel empty. I feel like there's too much and too little all at once. I feel undone, I feel lost.

Sometimes I feel like I don't even know where I am, even though I am fully aware of where I am in the back of my mind. I don't physically or mentally feel present today and I don't expect to be present tomorrow. Everyone is here one second and gone the next. I can feel the people I care about growing out of me, I can see their disappointment in my lack of growth. We all move on at some point, right? I feel stuck, I feel alone.

I keep contemplating what it means to be enough, to do enough. I come up with the same answer every time and I wonder if that will ever change. I already know that I don't do enough, I've never done enough. I always wanted to make a difference in the world. I always wanted to have a lasting impact on the people around me, but I've never been able to influence anyone. Sometimes I wonder if people even see me or if they even know my name. Sometimes I wonder if I'm even real. I feel unseen, I feel unheard.

I don't know how to be strong like everyone else because I've always been weak. I don't know if I'm okay, but I'm here. I don't know much of anything these days.

I'm tired.

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. 

Strengths

In CPD today, we discussed the results of the CliftonStrengths assessment that we were supposed to have taken prior to class. I'll be honest, I was simultaneously surprised and disappointed with my results. There are a total of 34 strengths, but we only got to see our top 5. Each strength fell into one of four domains: executing, influencing, relationship building, and strategic thinking. And while getting all of my top 5 strengths in one domain doesn't mean I don't have strengths in the other domains, it still made me feel insecure. All of my results fell into relationship building domain. My strengths were as follows: connectedness, empathy, developer, harmony, and adaptability. I want to believe that all of those are representative of me as I currently am, but I don't know that they are. Rather, I think that it's partly a reflection of who I hope to be.

But then something amazing happened after class. I went to chat with BVT for a little while. We talked about a few different things, but in everything that he said today, there are two things that I will remember for a very long time. One, how he got into his field of pharmacy practice, which is cardiology. And two, that he believes relationships are the important thing. I didn't know that I needed to hear that until he said it. I've lived my whole life basically craving human connection, so much so that it's bothersome to people around me. I have promised myself more than several times over now that in whatever time I have left on this earth that I will genuinely love and care about as many people as humanly possible. There's something very fulfilling about connecting with others around you. One of my favorite things is getting to know people.

Even though all of my strengths according to the CliftonStrengths assessment are in the relationship building domain at this point in time, I still have time to grow. Maybe the next time I take the assessment, I will get a different set of strengths. I'm a work in progress, a painting that is not quite complete, a puzzle that is not yet put together.

Soft Memories

It's past midnight now. I'm listening to music. And I'm remembering some very soft moments from undergrad. The softness and sadness in the music is adding to the way I'm feeling right now. I haven't decided whether that's good or bad yet.

What am I remembering? I'm remembering moments which at the time weren't so wonderful, but I can now look back on them quite fondly. I'll never forget being walked to the counseling center after physics during senior year- that was a rough year for me in more ways than one. When I think back to that moment now, I can't even recall what I was so upset about. At the time, I felt guilty because I had made someone worry about me and it was the last thing I wanted to do. But I also didn't feel worthy of that worry.

The worst days were the ones that I sat alone and cried. Freshman year for sure. Sophomore year probably. Junior year and senior year, people hugged me as cried. I cried a lot in undergrad. I made a list of all the times I cried at school when I was in undergrad. At some point though, I forgot to update it and add to it so I let it be.

But I remember the good moments too. Me sitting in Kite's office quietly studying or doing homework while he graded quizzes or exams. Now that I think about it, I don't know that there were as many quiet days as I'd like to believe. Silly/playful conversations, serious conversations, meaningful conversations, I probably had every conversation possible in that office. Those days were more or less peaceful. I miss them a lot.

The best days were the days when I was able to hang out with more than one professor. They were all in the same hallway. Those were the happiest days, I think. They had the same things to offer- love and kindness and encouragement. But they all showed it in different ways, not always with words. Two mugs of tea, chocolate bars, crushing embraces, ice creams, affirmations.

I'm as emotional now as I was back then. It's a bad thing. It's exhausting to me and bothersome to everyone around me. Even I get sick of me. Pharmacy school is a rollercoaster ride. I need to stop procrastinating now.