Patient perspective: Nelson Baker on rheumatic heart disease
From a throat infection to a heart condition. At 16 Nelson Baker was faced with the fact that despite living a relatively healthy lifestyle he had a heart condition.
It first presented as a throat infection— just a simple cold he assumed, nothing uncommon about that. Unfortunately, it wasn’t just a cold. The throat infection was a strep germ that had caused inflammation to parts of his body. Whilst most of the body recovers from inflammation (joint inflammation for example) the heart does not.
Pictured above: Nelson Baker
An attack or possibly repeated attacks of rheumatic fever (which presented as a throat infection) caused inflammation to Nelson's heart. After the inflammation went down his heart valves were damaged. For Nelson, the degree of damage was minimal. But to prevent any further damage to his heart he couldn’t afford to have another attack.
Fortunately, there is a way to prevent rheumatic fever attacks. Not so fortunate is that it requires a long-term commitment— a large injection of penicillin to the buttocks every 28 days for the next ten years. That’s quite an ask, particularly from a 16-year-old male teenager who admittedly was very afraid of needles. The other option was to not have them and to wait for another attack to cause potentially irreparable damage to the heart.
Now 23, seven years after being diagnosed, Nelson’s fine health and achievements provide inspiration for other sufferers. He is currently completing his diploma with WAAPA (Western Australian Academy of Performing Art) one of the most prestigious performing art schools in the country. Actors such as Hugh Jackman, Lisa McCune and Tim Minchin have once called WAAPA home. And last year, true to his artistic form, he turned his experience of living with rheumatic heart disease into a rap piece.
Nelson's rap piece ‘Sticking to Treatment’ provides a powerful message for other young Australians living with rheumatic fever or rheumatic heart disease. The rap has now been picked up by a local Broome company, Goorlarri media, and has been made into a film clip.
Nelson's message is significant because, as an Indigenous Australian, he is part of a population with the highest rates of rheumatic heart disease in the world. Nelson spoke to RHDAustralia about the difficulty of coming to terms with his diagnosis, as well as his thoughts on what patients and health professionals can do to help.
What was it like discovering you had a heart condition as a teenager?
At the time I was definitely going through a rebellious stage. I thought I was invincible. I didn’t want to hear I was sick, so I chose to ignore it. Rheumatic heart disease isn’t like some other illness, most of the time when you look at yourself in the mirror you don’t look like you have it.
I also often felt alone with my disease, I didn’t know anyone with it. That’s part of why I wrote the rap piece ‘Sticking to Treatment,’ which has now been picked up by local Goorlarri media and has also been made into a film clip. As a teen, I listened to a lot of rap, and I know a lot of Indigenous kids do too. With English, I could never quite express myself, but with rap, the words and rhyme just flowed. Kids need as much support as they can from family, friends and health professionals.
I didn't know anyone else that had rheumatic heart disease, so no one understood what I was going through when I found out. As I matured and learnt more about my illness, I began to understand the seriousness of it. There were times that I skipped my injections and then I would notice that I was getting sick. As a teenager with rheumatic heart disease, I often felt pretty alone.
A major problem in Australia amongst teenagers with rheumatic fever and or rheumatic heart disease is ‘compliance’. In other words, teenagers aren’t going for their injections on a regular basis. Your rap piece ‘Sticking to Treatment’ aims to address this. Can you summarise its key messages?
‘Sticking to Treatment’ is about my experience of living with rheumatic heart disease with a message to other young Australians. In it, I rap about the importance of adhering to a decade-long regime of monthly penicillin shots to prevent recurrences of rheumatic fever, which are what lead to rheumatic heart disease.
The message is simple, stick to your treatment, as in have your regular injections. This is just so important. The rap piece also highlights that they are not alone, even if they sometimes feel alone. I wrote down my thoughts and my story and my life and what I was dealing with from growing up from 16.
Injections always come at the worst time. But now no matter what else I’m doing, I make this a priority. I now see getting needles as just a part of my life. I’m not scared of them and I’m not scared of the conversation. It’s my normal. It sounds weird but I see injections as a little time out from the real word– to chill out, be a patient and not get too caught up in life.
Your rap piece ‘Sticking to Treatment’ is a message for others with rheumatic fever or rheumatic heart disease, but what message would you give to families and health professionals about the disease?
When I was 16 I didn’t want to go get my injections. I had this terrible attitude, like if this was meant to happen to me… so be it. I was angry. It was hard to understand how this could have happened to me, after all, I was a young and fit teenager doing a lot of sport. At times I felt helpless and depressed. In my rage, I stopped going for my injections, and only went when I started feeling sick. I would suggest the following:
a) Reassure them
My whole perspective towards my illness changed when I was told: “This is not your fault, and as long as you do this properly you will be okay.” With this reassurance, I realised I was in control of my health, that this wasn’t my fault and that I could manage this.
b) Make the first injection as comfortable as possible
When I was in seventh grade I remember lining up for a tetanus injection or something, and watching the girl in front of me getting hers, I couldn’t handle it. I ran home scared. I was 12 years old, the biggest kid in the class, and damn scared of needles. So you can imagine my reaction when at 16 I found out that I had to get injections every month for the next ten years.
If you are going to have any hope of convincing someone, particularly a rebellious male teenager (like I was) that they have to have injections every 28 days for the next ten years then try and make their first time as comfortable as possible.
For clinics and hospitals, please do not use a doctor or nurse still training or practising to give an injection the first time! Get an experienced health professional, preferably someone really comfortable with giving needles.
c) Understand your patient’s injection preference
Now that I’m a little older, I’m quite comfortable telling my doctor how I prefer my needle. I tell them to go as low as possible, to really grab the skin, and that I prefer standing up. I’m a lot more casual about this conversation because I know it makes for a less painful injection.
I have a great doctor now, she is easy to talk to, has a good sense of humor, listens (that’s a big one), is patient, and has even come to see a few of my plays. It’s comforting to have a doctor that helps you feel like everything is good and knows how you prefer to have your needles.
d) Explain rheumatic fever and rheumatic heart disease at every opportunity
The first time a doctor told me about rheumatic fever and rheumatic heart disease it was a lot to take in. I recall him explaining something about a throat infection, a strep bug and heart damage. He probably explained the concept really well, but the first time you hear it it’s a lot to take in. I was really overwhelmed.
Over the years I have learnt more by asking questions. I think it’s useful for doctors to remember that teenagers, in particular, might not understand their disease very well. So it’s worthwhile explaining and checking knowledge at every visit.
e) Show me the importance of regular injections
I found out recently that if you have a heart condition you can skip the line at a clinic. I’ve been having needles for years and years and I only recently discovered this! Things like skipping the line and having the most senior person giving needles help emphasize just how important these injections are.
What teenager wants to set aside a day every month to go to the doctor? Particularly if you feel fine. The reason I missed injections in the past was because I thought I was invincible. The date would arrive and I would think to myself, oh I’m not sick, I feel fine. This disease is largely invisible, so you really need to emphasise its importance. If a clinic shows the importance of needles then it helps a teenager understand this.