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. 

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.

Walk With Me

I love going on walks around my neighborhood. It gives me time to reflect, to imagine impossible scenarios, to remember who walked these streets with me. It's nostalgic and bittersweet, cathartic in a way. I think about all of the people in my life that have never walked my neighborhood with me. I picture what it would be like. There's nothing impressive about my hometown and yet there is something about it that provides such solace.

It's winter in this memory of mine. I slipped on some ice in front of the Indian shop where my sister, our mum, and I would go to buy samosas. I laughed it off with whoever I was with, but I'm sure it hurt to have fallen. I can no longer remember if it was just with her or if someone else had been there. That hardly matters now though.

Sometimes, if I close my eyes for a moment as I walk down Main Street from the park, I can imagine him riding his bike alongside me in the most unsafe manner. I valued his company back in high school. He understood something that none of my friends could because it was the one thing we had in common. Was it springtime, I wonder?

Summer now and I walk with my sister. I forget why we got into the habit of walking for a few days. Up and down Main Street in this town we grew up in. We stop at what practically passes for the Star Trek insignia and I take her picture. We are happy. I point out a Vietnamese place across the street next to a place that I once knew to be called 'La Priscilla.' It must have gone out of business because I don't see it anymore.

Summer again and an evening walk with my cousins and their parents. I think I took a picture of my aunt and uncle holding hands as they walked. I thought it was sweet, something worthwhile to reassure myself that love exists in this world. Dimly lit lights showed us the way back. It was dark by the time we all made it inside.

What did they call that ridiculous snowstorm of 2010? Snowmaggeddon, I think it was. My dad was outside doing his best to shovel a narrow path in our driveway, but the snow was at least a foot high. The end of the driveway always accumulates the most snow, which is the worst. Snow plows would come by and move a portion of the snow from the road into the driveways. I went out walking with the twins that day. The sun was shining, I didn't wear a coat. The snowy wonderland produced some beautiful photographs that day.

I'm on the phone with my best friend of 12 years. I'm crying and mourning a friendship that I've lost. I explain the situation to my best friend. She finds it ridiculous and unfounded. But I blame myself anyway and continue to do so for the next few months, and even on occasion blame myself today. I tell her that I'm biased so of course she would side with me. She doesn't blame me and I feel a tiny bit of relief, but still carry a small bit of guilty. If only. This is a walk I go on by myself, but I am not alone.

This one is happier. I walk around the neighborhood with a friend on a mission to discover where our biochemistry professor lives. We eventually find a car with an SU sticker and our curiosity is satisfied. But I have long since forgotten and won't go looking again. On another walk, or perhaps it is the same one, we meet an eccentric woman who offers us popsicles. Her dog is named Rufus. I have forgotten this too. It is a strange day.

My father walks ridiculously fast, I think maybe he always has. Walks with my father have revealed hidden surprises in this town I claim to know so well. We discover fruit that has fallen from the trees by the park. On another day, he points out a shortcut that I should have discovered on my own. As a result, I try to be more observant when I can be. But sometimes I'm too absorbed in my own thoughts and the music.

I can't recall the many other walks I've been on at the moment, but each and every walk is as significant and insignificant as the one before and the one to follow. Sometimes I walk just to remember.

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If you lead, I will not follow you. If I lead, I will not wait for you. Walk with me, beside me, hand in hand until the end.

2/8

My community pharmacy IPPE rotation has come to an end. It's hard to believe that four weeks have passed. When my rotation first started, the end felt so far away. Now that it's over, I feel very sad about it. I'm a very sentimental person and I form attachments quickly and easily, but I never really expected to feel this way about my rotation. Somewhere in my mind, I've told myself that if I don't cross off Friday, May 25th, from my whiteboard calendar that's on the fridge then my rotation won't really be over. It is over though and although my heart still feels heavy I'm working on getting over it. I'm fortunate to have had such a wonderful preceptor, rotation site, and experience. I have a lot of improving to do, but I know what I should focus on as well as what I'd personally like to focus on. 

I somehow, by the grace of God, survived the second semester of my P1 year. I got one more A than I expected and I passed PK. I spent a lot of time worrying about passing PK so it felt really good to know that I had passed. Passing PK means that I can hold my position in SNPhA as Mental Health Awareness Chair and rush for PDC in the fall when school starts. I'm looking forward to beginning therapy modules this upcoming semester. I know that they will be difficult, but I'm ready to give it my all. After a year of pharmacy school, I sort of know where I stand and where I need to improve academically. Ready to take on the world/get an A- I'm looking at you, cardiology module. 

Pharmacy school has been really good for me so far. I don't know that I've necessarily grown a lot as a person, but I think I'm a little more outgoing than I used to be. I do try to put myself into situations where I have to be more social and interactive. I make more efforts to volunteer for things than I ever did in the past because I told myself that I would be better in pharmacy school. The things that I do may not necessarily have a lot of impact in the grander scheme of things, but my willingness hopefully says a lot about me. I have been and am very loved by the people around me in pharmacy school. Sometimes I wonder if my friends really understand the depth of my gratitude towards them and how genuine my love is for all of them. I love my friends and my fellow pharmacists to be very much. On the whole, I still feel that everyone is supportive of each other and always willing to lend a helping hand, and I'm truly grateful for that. I've experienced a lot of firsts and I'm happy to have experienced them with wonderful people. And I can't wait to keep experiencing more firsts with them. 

P1 is done, P2 here we come! 

If you missed it, here is my reflection post about the first semester of pharmacy school: 1/8