What it’s like to have a heart transplant – at 23.

Happy American Heart Month! This post is a bit different than my usual food content… since we’re not talking about food at all! I’m not really sure where to start, since there’s so much to cover, but I guess I’ll start with the basics. 

Hi, my name is Iman, I run this blog, Bay Food, and I had a heart transplant almost 6 years ago in April 2014 at the age of 23. I’ll be 30 this year. 

I’ve mentioned here and there since it happened, but I’ve never really discussed it fully. It’s a lot to explain, and I wasn’t really sure if anyone would be interested. I also didn’t want to look like I was talking about it just to post about it for engagement or something. A part of me wanted to do it because it’s something that’s unique about me, I’m not JUST about food (even though that’s my blog’s focus), and I don’t really see many women of color talking about their health conditions. Most of the people I see on Instagram are white women talking about their transplants, caners, etc., which is great that people are open about it, but I don’t feel like that really represents me as a brown, Pakistani woman. 

I’ll be covering a few different things over the next couple of blog posts, but let’s start with the heart transplant itself. 

So what exactly happened? 

A lot! So much that I’m going to have another post chronicling past events that got me to where I am today. But, I’ll give you the SparkNotes version and say that I’ve had a heart condition since I was 7 months old, managed it with medications though it got worse as the years went by, and at 22 and a few weeks before my college graduation, I went into cardiac arrest. Almost exactly a year later, I had a heart transplant. 

Before my last semester of college, I had meetings with my doctor and my parents, where we discussed the transplant process, the steps I would need to take to get on the list, and what would happen after. I was initially going to be listed as a status 7, where I was technically on the list but inactive because I was going to move to Sacramento for a summer internship at the Lieutenant Governor’s office, but because I had the cardiac arrest a few months later, my status was bumped to status 2 (active and waiting at home) once I recovered from that. 

When I got the call, it was pretty anticlimactic. I was watching Parks & Recreation in my room on a Saturday at 5 PM. I’d literally had my phone on me every second of the day from the moment my name was put officially on the list, for the day that they would call me to come in to get my new heart. You don’t get a pager anymore. 😉 

Not everyone knows this, but I actually got a phone call about a new heart several weeks before this. At that time, I was definitely nervous and didn’t know what to say because I had finally gotten THE call. My status moved up to 1B because I had a permanent IV line to keep my blood pressure up and I was able to stay at home rather than be stuck in a hospital. Except, this call was different than I thought it’d be, with them giving me information that the donor had certain health issues which could I could potentially get once it was transplanted… which would essentially bring me back to square one. You only have a short amount of time to say yes or no, because an organ is only viable for 4 hours – kind of insane to decide if you should take this heart, get a chance to live, but potentially get sick again, or just wait around for whenever the next opportunity popped up. 

Ultimately, after talking to my parents, my uncle who’s a cardiologist, and my own pre-transplant doctors at Stanford, I decided to decline. Later on (once I had my actual transplant), I remember my uncle telling me he felt guilty that he encouraged me not to take it, because what if that was my only shot? It sounds cliché, but I felt really calm and confident in my decision when I said no. I had faith that God would provide me with a better and more viable heart soon, and He did! 

Okay, back to the second call that ACTUALLY changed my life. Essentially, you’re told that there’s a heart that matches you according to your blood type (apparently I was the only patient at my hospital with my blood type, so that gave me even better odds because I would be the priority), and to please come to the hospital. They would have a room waiting for me in the Cardiac unit. Having stayed there twice, and visited my dad when he had a heart attack, my entire family knew that unit very well. 

I changed into some comfy clothes, got together a few things I’d need to pass the time, and we all (my parents and sister) went down together. I think we were all anxious, especially because even up until the last minute, when I would be on the OR table, something could go wrong and the heart may not be a match after all. So, I just braced myself for the worst, especially with that first call in mind. 

I checked in, they did additional tests on the heart, and I was scheduled to have my transplant surgery in the morning! The heart was still in the donor, so it would arrive by the time they would start my surgery. My sister stayed with me that night, and we watched Pirates of the Caribbean (the first one because, obviously).

The next morning, we were up early, they did all of the necessary prep for me, and I was basically ready to get wheeled over to the OR. I remember my cousins calling me before to say good luck, make dua (prayers), and to say that they loved me. And then before I entered the OR wing, I hugged my family and said I loved them. These were probably the most sobering moments (I know, kind of insane given the year it was), but I think it hit all of us that I was going in for a really, crazy surgery and who knows what could happen. And, my family doesn’t talk about ~feelings~ a whole lot, so it also meant this was serious business. 

I got comfortable in the OR, and thankfully they gave me a warm blanket while we waited for the heart to arrive. I did get to listen to music in the OR, and I couldn’t think of anything else so I just chose Justin Timberlake. In hindsight, the last song I remember hearing was Sexyback… maybe not the best choice? Oh well. 

Once we were ready to go, I got a chance to talk to my mom on the phone one last time, and then I was knocked OUT. The surgery went well thankfully, and when they put the heart inside me it started beating on its own, so the team didn’t even have to jumpstart it artificially! 

For me, the aftermath, is where all the work started. After the surgery, I was put on an oxygen machine for a short time, because they weren’t sure if I’d be able to breathe on my own right away since I’m a really petite person. Luckily, I was determined, and my lungs seemed to have caught on, so I quickly got off of the C-PAP machine. I saw my family, but I was pretty drugged out and couldn’t speak right away lol. 

One thing I remember, was that my uncle asked how I was doing, and 1. I kept writing to everyone that I was “board” and I knew I was spelling it wrong, but couldn’t fix it and 2. I wrote down that I waited for them (my aunt and uncle) to come back from Pakistan since the timing was perfect that they were back in California. I was also hesitant about the fact if the transplant happened and he wouldn’t be here, because he’s everyone’s go-to to translate medical stuff in ways my parents (and me sometimes) can understand easily. 

The next few weeks are honestly a blur. Everyone wanted my vitals to get stable, which took some time, since I was on so many medications (especially ones for anti-rejection) and my body was adjusting to having a foreign object inside of it. I was nauseous in the beginning, I couldn’t hold down food, I was restless but I’d also zone out, and then I got super lethargic after my dopamine drip was removed. I actually quoted Ron from the Prisoner of Azkaban movie when he said that experiencing a Dementor was like he’d never be cheerful anymore. That encapsulated what I felt like when I was lethargic.  

Luckily that subsided, and slowly I was getting back to normal – or what was better than normal for me! I’d walk around the unit to get my legs used to it, watch TV, talk to whoever was taking care of me that day and visitors, deal with the rotating and endless test (x-rays in the morning, bloodwork throughout the day, etc.) and just wait it out.

But then, I started to have difficulty breathing, and it turned out I had a pericardial effusion. This is when there’s excess fluid between the heart and the sac surrounding the heart. So, I had to go back into the OR to get the flud get it drained.

We were all confused and frustrated about this complication. It happened maybe a week after my initial surgery, so it delayed my discharge time more. The doctors also said it was due to a chyle leak due to my lymph nodes getting nicked during the surgery – which, why wouldn’t you have told us that happened right after the surgery? 

Also, OF COURSE it happened to be a rare occurrence, so there isn’t a lot of literature out there about how to treat such a situation and let it heal. I’m pretty sure my situation is probably documented and written about in some medical paper, because I remember the fellow on my surgery being really excited that he would get to write about this. Boy, did I want to tell him off – this is not Grey’s Anatomy! The pericardial effusion would eventually close up over time, so that wasn’t too concerning (and it did). 

This procedure also meant that I went back to the ICU for a short time for recovery. The ICU is the WORST. Having already been there for the first few days after the transplant, it was a hassle. They conveniently change nurse shifts right when visitors can come and the doctors do rounds then, so I couldn’t have a family member come in during that time. This was such a sore point, because 1. that member in charge for the day couldn’t talk to the doctor until later in the afternoon, which is so annoying because it would take forever to get questions answered and 2. I’m medicated, so it was hard for me to retain everything they would say to me. 

So that was happening again, and then I ended up getting placed next to some woman who was on a feeding tube and breathing problems, and was basically talking about how she wanted to die. That was my breaking point. I needed to get out, and I fought and pleaded with my doctors to move me back to the cardiac unit where I would have my own room and not have to listen to other people wanting to die. No joke.

The supposed way to deal with this leak, was to go on an extremely low fat diet. Like, literally, it was 10 grams of fat TOTAL FOR THE WHOLE DAY. This is actually really challenging, because if your food is fried in oil, that has fat; things like avocados have good fats, but it didn’t matter whether it was good or bad. So, I was cranky and hungry, and my mom and my sister put up with my annoying self and found ways to make super low fat food that I would like. I remember on the first day they decided to put me on the diet, my dad got me nachos from the cafeteria. We know I LOVE nachos, and since he’d already gotten it, I was going to eat it. I figured the diet would start tomorrow so I might as well be able to enjoy this last meal. 

The dietician decided to stop by (who hadn’t been on the rotations prior to this, and thus hadn’t even met me!), and got mad at my dad for daring to give me this food. I would’ve rather she got mad at me since I was the one eating the food, so naturally I got angry that this stranger would dare talk to my father like this. It’s terrible, but I got mad at her and told her not to come back.. And she didn’t. 

What I want to quickly mention is that, when you get new doctors who haven’t dealt with you, they don’t always listen to you. As a patient, and especially one that’s pretty attuned to my body, my needs, and my situation, I have good judgement about what I need. This trust took a few years to build with my pre-transplant doctors, and now I had to trust brand new people I had never met make decisions and give me their opinions. I’ve learned as a child from watching my parents that I have to be my own advocate, ask questions, and give opinions on what makes sense for you. So, from getting back into a room where I wasn’t listening to someone’s suicidal thoughts to feeling disrespected by a brand new doctor I had never even spoken to, I had reached my limit. I was also on a steroid called Prednisone, which is notoriously known for giving patients mood swings – and I was definitely responding to that. 

I was finally discharged a little over 3 weeks later! I had one biopsy out of the way (the best way to check for rejection) and still had to be on a super low fat diet, but I could slowly increase it as time would go on. I was still cranky, but at least I could finally escape the hospital. I hadn’t had a proper shower in weeks, I was becoming one with the bed, and it just sucked. Even if I did have to go to a hotel, at least it would be quiet and I’d get to be with my family. I had to stay within a certain distance of the hospital in case of an emergency and the ambulance had to take me to a hospital, we needed to make sure they’d take me right back to my hospital that deals with organ transplant patients. 

Thankfully, I only ended up staying there for a couple of weeks because I was doing really well! My mom managed to convince my team to let me go home, rather than spend my first three months (and the most critical) in a hotel room. And I really think that was the best decision, because I was SO HAPPY to be home! I hadn’t seen my room in almost two months, nor had I slept in my own bed. It was the best feeling to be back in your comfort zone where you could recover in peace with your family around you, instead of having them take shifts. 

I’m going to end my post here, because this got insanely long! I want to cover some post-transplant thoughts, my life in a nutshell prior to transplant, and some of the other things that come with having a medical condition. 

Thanks for taking the time to read this crazy, long post! It’s interesting reflecting back and realizing how far away all of that is, now that I’m living a “normal” adult life where I don’t have to constantly worry about what would happen next.

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