Beta Blocker Decisions

I wrote here about my last cardiology appointment and how my doc left it up to me as to whether or not I wanted to start beta blockers now or later, saying that he couldn’t really recommend I go one way or the other. Now, for those of you who don’t know, beta blockers are used in cases of Marfan Syndrome, in order to lower the heart rate, therefore decreasing the amount of stress put on the aorta, with the objective being to postpone heart surgery longer and to make the chances of aortic dissection lower. At the time, because my aorta is still fairly stable and because beta blockers can cause many highly unpleasant side effects (which with my medication history, I’d be very likely to pick up) I made the decision to stay off of the beta blockers for now. This was not carelessly decided mind you, I did a lot of research and spent many hours discussing and contemplating my choice. And of course, I’ve often wondered if that was a reckless or stupid decision.

This was back a few months when on average my resting pulse was always in the 60s and my blood pressure usually around 110/70.  And while my blood pressure hasn’t changed at all, my heart rate certainly has. Now it’s usually 100, often spiking to and staying at 120 – which is the recommended maximum limit for those with MFS who are not on beta blockers. This is very odd for me, nothing’s changed in my eating and exercising habits, caffeine intake etc. But it has me worried that I should definitely be on the beta blockers now. I was thinking of giving it a few more days and continually checking both my heart rate and blood pressure on the at home monitor we have, to see if anything happens before making an appointment with my GP. But this has been going on for a few weeks now and it doesn’t seem ready to quit.

I wish my cardiologist lived closer, right now he’s 8 hours away. My GP is good but she doesn’t know MFS the way he does. I don’t want to be stupid with my life, but I also seriously don’t want to deal with the monstrous list of effects that beta blockers can have on you, like, for instance, zapping all of your energy and making you feel tired all of the time. And headaches, I certainly don’t need help getting those, I do just fine all on my own.  I’m really struggling already and don’t know if I could keep any more fight in me if it got any worse. And for some silly reason, I feel like being put on beta blockers would be a huge negative turning point – like another notch in my “look what Marfan Syndrome is doing to me” belt.

What to do?

Knowing is Everything

I keep coming across a story that’s been floating around on the internet, about a 15 year old boy named Jacob, who died of massive internal bleeding caused by a ruptured dissection. Jacob was taken to the hospital – 4 days prior to his death – because of severe chest pains and a black swelling on his neck. Staff at the Wharfedale Hospital were so concerened that they sent him by ambulance to Leeds General Infirmary – the largest teaching hospital in England – suspecting that he had a bleed in his chest. Once there though, he waited 3 hours to be seen, despite phone calls to the hospital warning of his arrival. When he was seen he was told that he had a chest infection and was sent home with painkillers by a junior doctor without further medical review. 4 days later Jacob passed away.

There are so many things wrong with this story. Why would you make a 15 year old with suspected chest bleeding wait for three hours just to be seen – by a junior staffer none the less. And yes, knowing he had Marfan Syndrome could’ve likely made a huge difference, but there are so many things the doctors could’ve done differently that may have also saved his life. For one, why didn’t they check the blood pressure in both of his arms? Such a simple step. It should’ve been determined with 100% certainty that there was no bleeding, how hard can that be, when this boy’s life had depended on it. Why was a guarantee of his survival not worth a quick imaging study of the chest? 

It’s a sad and sober reminder of just how critical it is to be diagnosed with Marfan Syndrome at an early age and how important it is to raise awareness to not only those who may have the disorder themselves, but those who are responsible for treating us. If we keep talking about it, writing about it and spreading the word, then maybe one day the world will know what Marfan Syndrome looks like and tragedies like this one will cease.

I remember one of the last times I ended up in the emergency room, not one nurse there knew what MFS was, they had to look it up on the computer. I do live in a small town, but there is a chance that one day I’ll end up there at a critical moment and them knowing about my disorder could make all the difference. I always carry an emergency alert card in my wallet wherever I go, should I ever need emergency care and be unconscious and unable to tell them myself. I recommend you check out The Marfan Foundation’s tool kit or get a medical bracelet to alert potential doctors of your disorder.

I was lucky. I knew about Marfan Syndrome from an early age because of my dislocated lenses. Even when they falsely told me that I didn’t have it at 4, I was still aware of my early experience with the word throughout my life. If I hadn’t known what it was later on when unsettling symptoms began to arise, then I would’ve continued to play basketball and volleyball well into my life without giving a thought to it. I was lucky because I had the chance to find out for sure, before any real consequences arose. I’ve learned how important it is to rely on yourself and your instincts, how the word doctor is just a title and that you can’t put too much faith in a title. It was me and my family who had the sense to suspect that I did in fact have Marfan Syndrome despite what I had been told indefinitely so many years ago. Then we learned that the disorder can’t be ruled out at such a young age. A few years after we started exploring the possibilities my aorta started to dilate, and I shutter to think about what could’ve happened had we not taken my care into our own hands and into the hands of a new group of trustworthy professionals.

[Any medical terms and/or definitions featured on this blog have been thoroughly researched by me as to not lead to any false consumption of information by the reader. Though, that aside; I am not a doctor and the medical information on this site should not be taken as a substitute for the advice of medical professionals. If you’re experiencing any health issues don’t hesitate to contact your doctor.]