I’m back from our little Vancouver trip. 4 days later and I’m still very lacking in sleep. Last night I was lucky if I got an entire 45 minutes before we were up and on the bus – which I also couldn’t sleep on. I attempted a nap a bit after we got back and wouldn’t you know it? That didn’t work either.
Anyways, despite what it may seem I’m not actually writing this post just to complain about my desperate need for sleep – though I’m not gonna lie, it’s nice to vent. I’m here to tell you how my eye and echo-cardiogram/cardiologist appointments went. My eye is still being a tad unsettling. I still have the “ring of doom” as I call it along the outside where I can see out of my lens a bit. But the ophthalmologist has no way of seeing whether or not the lens is about to dislocate so I’m still waiting it out. He lasered off the suture sticking out of my eye, which I have to tell you was highly unpleasant but luckily fairly quick. For one, there was a mix-up and they forgot to freeze my eye, which isn’t too big of a deal because last time my eye wouldn’t hardly freeze anyways. It felt like someone literally burning my eye, which is what was practically being done. The bouts of one laser weren’t too bad – though not enjoyable – it was when he would do shots of three in a row that became pretty painful. It’s still a bit sore but no worse now than when the stitch was rubbing and it should be healed in no time. So, I’m glad that’s all done, it’s a relief to have it dealt with.
Then there was my last *tear* official appointment at the Children’s Hospital before I age out. It was nostalgic, 14 years later, to be saying goodbye to such a familiar place. I’m so grateful to everyone there who’s been so integral in the journey I’ve been on with my disorder. The woman who did my echo was a real peach – sarcasm implied. She was very nosy and judgmental about anything having to do with my life and my dealings with pain and health issues. Her entire demeanor oozed judgement and shallowness. I’m always astounded at people who cast their ignorant opinions on my life with so little understanding or compassion when in all honesty I probably suffer through more in one month than she has in her entire lifetime. Anyways, I couldn’t understand why she kept asking me so many personal questions just so she could belittle me when I answered. I should’ve stood up for myself or put her in her place but confrontation doesn’t come naturally to me and she caught me a bit off guard. Plus I just wanted to finish without making it more awkward than it already had gotten. Note to you echo lady: if you can’t behave better than that you have no business working in a Children’s Hospital with children who have or may have heart problems!
Okay, sorry, I’m done my rant. The results of my echo were alright. I now have mitral valve prolapse with slight mitral valve regurgitaion, which doesn’t surprise me. For those of you who don’t know, in simple terms MVP is when the mitral valve of the heart doesn’t quite close all of the way when pumping out blood, thus potentially allowing blood to flow from the left ventricle back into the left atrium of the heart.
We spent the majority of the 3 hour appointment going through my various Marfan-like features with the cardiologist as well as whether or not I should begin beta blockers soon to potentially slow the rate at which my aorta dilates. A nurse in the building who specializes in various connective tissue disorders like MFS and ehlers-danlos was also kind enough to participate in the appointment on her own free time. They went over the ghent criteria (criteria for being diagnosed with Marfan Syndrome) one by one checking which points apply to me. The end result said that taking the major feature of my aorta dilation along with many of my minor features it would appear that I meet the criteria for a Marfan diagnosis even without counting the major feature of my dislocated lenses. Both of them also said that they personally think that my tissue disorder is in fact specifically Marfan Syndrome. It was nice to finally have a proffessional involved in my care acknowledge the fact that I meet the ghent criteria.
As for whether or not I should begin beta blockers the doc said it’s entirely up to me at this point. He said that they can’t keep the aorta dilation from growing, they can only potentially slow it down perhaps pushing back the need for surgery farther than without. But, he also said many people have a very hard time on them and knowing my history with all medications, I can only assume that’ll more than likely include me too. So, basically my options as of right now are: start taking beta blockers and hope that I can put off surgery for a longer amount of time and live with whatever unpleasant effects they may have on me, or, live life normally (not recklessly, mind you), monitoring my aorta as usual (I’d have to do that either way) and when I’m in more of a danger area in regards to aorta root size consider beta blockers then. At the size my aorta is right now the risk of dissection is very low, though, not non existent. For now I’m going to stay off of the beta blockers. If, in a few years time, things start changing faster then I’ll reconsider. For now I’ll just continue to be careful and follow the appropriate safety guidelines. This is an entirely personal decision. If my cardiologist had said “I think you need to be on beta blockers” then of course I would take them, but, things are stable right now and I’m going to enjoy that while it lasts.
I know this has been a long post and I’m glad that I haven’t lost you yet. This is the last of my updates. Since my cardiologist doesn’t see patients above the age of 18 and he made very clear that he’s not comfortable leaving me in the care of anyone who isn’t highly familiar with the effect of tissue disorders on the heart, he is referring me to another specialized hospital in Vancouver for my yearly echo. And I thought my annual Vancouver trips would be history after this! That’s okay though, I’m really glad that I won’t have to leave such an important part of my care to someone who doesn’t know all of the ins and outs of Marfan Syndrome. It’s a relief to know that he wouldn’t just let me fall off of the map after this. He’s been a good doctor throughout the years and I’ll always be grateful for the care that I’ve received as his patient. So, thank you a million doctor S!
[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.]