My day at a heart transplant hospital

Yesterday was my first trip to a heart transplant hospital.

This post discusses my experiences, and my personal understanding from the information I was given. It is not medical advice. Please speak to a Doctor if you need advice.

My name is Rachel and I have arrythmogenic right ventricular cardiomyopathy (ARVC) caused by a problem with my genes. I experience arrythmias and have survived a cardiac arrest. My condition is getting more difficult to manage and so it's become prudent to start exploring what's next for me.

In April I was referred to a specialist hospital for an assessment for a possible heart transplant. This happened during my second stay at my hospital's coronary care unit (CCU) because I'd been experiencing VT Storm. I'll save the story of this visit and my experience of being told I could need a transplant for another time, today I just want to talk about my experience going to the transplant hospital.

Within a few months of the referral I had an appointment booked. It would happen in August and I was asked to come in for all day for a series of tests. They ended up being an ECG, Echocardiogram, Respiratory Test, X-Ray, and comprehensive set of blood tests. As well as weight and height. I would've also had an exercise test (which I believe would've been a VO2 max) but the nature of my condition means that exercise raises my risk of arrythmia, and also causes more damage to my heart.

My regular hospital had already done the tests (as well as additional ones, like a CT scan) but they wanted to do them again. No harm in verifying the results, and it turned out a few things had been missing from the results they received.

As this was an all day trip, and the hospital was almost two hours away I started my day around 6am, giving myself enough time to have a shower and coffee, and prepare a bag for a day long trip. The trip was straight forward and I was much calmer than I expected to be. Despite Citymapper telling me I'd be late, I got a lucky bus connection and arrived at the hospital early.

The hospital fairly small compared to those I'm used to. It's in a beautiful green area and I'm told has a lot of pleasant things to explore. The hospital was bright, and decorated in a way to make it seem about as pleasant to be as it could be. You can tell they're aware of the emotional state that people who visit may be in, and I was also told that patients can be there for a very long time.

I spoke to reception who sent me to where I needed to be, and only had to wait a few minutes. I was given a nurse for the day and she explained what tests I would be having, and we had an initial discussion about my history. She was lovely, patient, chatty, and respectful. Over the day I felt like she really cared and I appreciated her patience to let me speak. I'm so used to doctors rushing to their next patient.

I was told that heart transplants are serious operations, and that they require a long term commitment from a patient, and even from their friends or family. Once you have one the long term success of the transplant is highly dependent on the patient's adherence to medication, as well as the support that they have at home. I was asked about my relationships with friends and family, my home life, how I am with taking my medication. My nurse made sure she explained why she was asking these questions and I felt at ease.

We needed to get me to my first appointment so we paused my history discussion and the nurse escorted me to the blood test clinic (phlebotomy). I was greeted by another friendly person, was made me feel at easy by asking me questions like where I had come from that day. A lot of people have great difficulty getting blood from me, but she was an expert, felt for the vein, and got one first time. I don't think I've ever given that many tubes in one go, around 12, but it didn't feel like it at all.

I was now free to go to my other appointments on my own, some were at specific times, and others had queues that I could just turn up to. I'd been given enough directions to get around, and it was all in a small area with sufficient signage. Mostly everyone was friendly although I did do a couple of tests where I thought that the person doing them could've been more friendly, especially compared to how fiendly and supportive everyone else was. I wish I had the skills to say something like "could you be a little friendlier, this is one of the most distressing days of my life", or "you seem to be annoyed/disinterested, have I done something wrong?", Unfortunately, I am still a recovering people pleaser.

I didn't wait a long time for any of my tests, and when I was given a copy of my results when I requested them, something I am always grateful for. Many of the results go into the MyChart app, but I find that I often get incomplete scans, and that things like ECGs are not included. I love seeing them, and learning how to interpret them, it makes me feel like I am a little more in control of my life than if I just leave it to them. I find that this feeling of control is so quickly lost during hospital stays, so I appreciate when people make every effort to give me a sense of autonomy.

I reported back to my nurse this time waiting about half an hour. We went through the rest of my history, smoking, operations, medications etc. Once again it was patient, and nurturing.

I was able to talk about how being here felt to me. I've not yet discussed this on this blog, but there are trials taking place at the moment for a potential treatment for my condition. So far the only treatment that exists for my condition is palliative care, but if successful this treatment can give me a working gene that should stop any more damage happening to my heart, at least for some time.

First let me share what I was later told by the doctor who saw me.
A heart transplant is where you have your heart replaced with a compatible one from a donor, someone who is recently deceased. However, it's not as simple as having a transplant and then enjoying life from there on. Your body's immune system will consider the heart to be foreign tissue and it will try to get rid of it. Efforts are made to find a compatible one that will have the smallest immune reaction, but transplant patients will need to go on immunosuppressants for life. The average life expectancy is 14 years, and you're at greater risk from infection, as well as from cancer. As the years go on your cancer risk grows a lot, and skin cancer is the most common kind.

This sounds horrible, but I understood that there would be plenty of advantages too. By the time you need a heart transplant it's likely that life will be very difficult to manage. I was told there are three levels of priority, and two main indicators for a transplant.

One indicator is where you're experiencing heart failure. The heart is not working as an effective pump and struggled to get blood around the body. This would cause things like struggling with physical activity, retaining fluid in their legs, and other symptoms. If other treatments have been explored eventually people experiencing heart failure may need a transplant.

The other indicator is arrhythmias, and is the one that's led to my referral. My doctors and I try and control my arrhythmia through medication, pacing treatments from my implantable cardiac defibrillator (ICD), and lifestyle changes like avoiding exercise. As my condition progresses I've needed more serous medication, as well as an operation called an ablation. There's still room for more treatment, but at some point if my arrhythmia becomes something that we cannot effectively control anymore I'll need a transplant.

I was told there are three different levels of priority for transplant patients.

First you have people who are managing at home, it's been mutually decided that a transplant will be best for them, but they can go on for months, perhaps years without a transplant (though they really do need one). They're the lowest priority patient.

Second there are people who are experiencing heart failure or arrhythmia that cannot be managed at home. These patients will move into the hospital and are the second highest priority.

The highest priority are people who need to be on life support. They're the highest priority.

I think that I would wait as long as possible, until things couldn't be controlled outside of the hospital, but perhaps I'm not really seeing how awful months of staying in hospital on difficult medications would be. I find that my perspective is quickly changed by experiences I can't imagine well. However, given the average life expectancy for someone after a transplant is 14 years, it's not something I'd want to do even a year earlier than I needed to.

So back to the trial that I am interested in. I have heard there are early indications that people who receive the treatment not only don't experience further degradation, but some less advanced cases even see some improvement in the damage that's already there. It's unknown yet how long this lasts but this is amazing news. If it comes to market someone need never go through what I am going through.

I explained all of this to the nurse, and that with that in mind the idea of a transplant felt like a loss of hope, rather than giving me hope. I'm balancing the possibility of my a cure buying me a lot of time, against a transplant with an average life expectancy and a more difficult life compared to the one I currently live.

My nurse received this very well and I felt understood and seen, which is a rare experience for me, especially in healthcare. Compare this to a year ago after my ablation when my doctor wouldn't answer my question about what's next for me when the news from my ablation was that my condition is more advanced than previously known.

I had one final test followed by a short wait until I saw the doctor to discuss a transplant with. She was also lovely, patient, and explained everything to me. She decided to book me in for additional tests to check the function of my heart, and also offered to refer me to psychological support services if I wanted, and I accepted.

My nurse caught me again on my way out, and asked me how I was, I told her I needed to decompress. She gave me her team's number and email, and told me to please ask any and as many questions that come to my mind no matter what they are. I often feel like I am a burden when I contact healthcare teams, but I would not feel that way contacting the heart transplant team. She did a really great job.

I decided to get public transport back as it wasn't so tough on the way there. I messaged some friends, and, well not much. I'm going between feeling numb, to having strong emotions, to refusing to accept that this can be me. I ended up watching a show from my teenage years and the nostalgia from being a healthy young person with a whole life ahead of them released the the sobs. I'd like to think that my life still is an open book, I can make of my life what I want to, but I am certainly more confined in what that would be. I've started estimating the number of months that I have left, and I can't describe what that does to a person. It's certainly a topic for a post of its own.

There's lots I haven't covered here, I'm sure. Here are some of the other things I remember being told.

There's an 85% survival chance in the first year.

Recovery from the transplant can be weeks or months.

Once you're out of the hospital they see you weekly, then monthly. They need to keep a close eye on you for rejection.

It's recommended not to go abroad in the first year.

After a year you can take slightly fewer immunosuppressants.

I hope this post is helpful to someone. If you're going through this please remember this is just my own personal experience. Everyone will experience things differently, and will be in a different place, with a different condition and set of circumstances than mine. Every experience is completely valid.

Rachel x