Yearly heart checkup.

I know it’s been a terribly long time since I’ve done a proper post! I’ve got a few updates. My mom and I recently made the annual 9 hour trip to Vancouver for my cardio checkup. This year we went to St. Paul’s Hospital to meet my new “adult” cardiologist.

The bus ride was pretty painful. We take the health bus (it’s only 40$ each way which is a huge financial help). Though it may be a health bus but it’s terribly uncomfortable. My tailbone dislocated towards the end of the trip so by the time we got there I was about at my limit and super happy it was over.

Appointment day was pretty rough too. We started at 8:30 in the morning with my echocardiogram which is always a bit painful because of my rib problems. Next was my chest x-ray at 10 and my chest CT at 10:30 (so much radiation!!). We ended up waiting for over two hours for that and missed my ECG appointment altogether (they said not to leave for it because the CT was more important). They finally got my IV in for the contrast dye and I thought we were ready to go but then we had to wait some more.

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Finally we just had to tell them I was supposed to meet my cardiologist in a few minutes so we had to get the CT done. We met with a nurse who asked us some questions and then we met with a resident doctor who asked a few more and listened to my heart. Then we finally met my cardiologist. The news was wonderful; my aorta hasn’t grown anymore since last year! She also said it would be okay for me to stop taking my beta blockers which I must say made me quite happy! We only spoke to the doc for a few minutes in total. Generally she seemed likable but I still have such a hard time trusting doctors after all of the times they’ve failed me.

I requested all of the records of the appointment – it’s been recommended that I start doing that at every appointment from now on. So that if need be I can send them to an EDS-MFS knowledgeable specialist or take them with me in an ER situation. In the end we didn’t get back to the hotel room until 3:30 pm. It was a hectic day of running around and being poked and prodded.

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I enjoy our little stays in the big city (once I get over my home sickness, which I’m really bad for the first bit). I like the isolation of being disconnected from our usual boring lives and not having a computer or all of my possessions. It’s kind of like a little break from reality (aside from the medical appointments). We don’t generally do much when we’re there because neither of us ever feel too good. Shopping and sightseeing is no fun when you’re body is screaming at you so apart from walking to the grocery store for the necessities we don’t go out a whole lot. We’ve been going there for appointments since I was four so it’s kind of like a second home and it’s not too exciting anymore.

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This is my little workshop setup in our Easter Seal room. I spent most of my free time in Van sitting here drawing. How adventurous am I?!

All of that aside there’s a little art store call ArtRyan next to the grocery store. I have to go there when we’re in the city, it’s my kryptonite. We don’t have an art store where I live so it’s like heaven. It’s the only place I can get good, reasonably priced supplies. And it’s a small locally owned business. The owner is a very kind man who himself is an artist with a studio in back. He gives me good tips and advice on the things I’m looking for and he really knows his stuff. It’s nice when you do spend money knowing it’s supporting someone like that.

The bus ride home was particularly rough. It’s been a week and I’m still sore from it. But hey, I’m back home now with good news, a nasty IV bruise and some awesome, much needed art supplies. Apart from that it’s like we never left!

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15 thoughts on “Yearly heart checkup.

  1. Hi Katie,

    I stumbled upon your great blog! I have EDS, Type II and developed keratoconus (KC) from it within the last couple of years that just went crazy and have low vision now (I had CXL surgery to halt it, if familiar). I know all about Marfan’s, as I was misdiagnosed for 12 yrs and when the KC was finally diagnosed (too late), I researched possible causes and got 3 connective tissue diseases and bingo! I already knew what Marfan’s was (fancy that!), so it was EDS, as the other involved bones, and a geneticist confirmed it. So, here I am–a much older, degenerating mess. I posted here as I saw the cardio for my MVP recently. How many specialists can one person have? Haha.

    So sorry you’ve had to deal with illness from such a young age. I didn’t get sick until my late 20s. I sometimes wonder if people like you can cope with it better, as I know what normal is and I lost it all. Well, I try to not think about that or I get horribly depressed. There’s sometimes a bit of a Marfan’s overlap w/EDS as you probably know. My late grandfather had a Marfanoid-like (not true) appearance and I can do the wrist and thumb sign, but don’t have his stature or build. I deal with massive, chronic pain so I can relate to you there, as well. I’m also originally from Seattle, so even though you are a long drive from Vancouver, I’ve been there so many times–all over BC! I love it, but too sick to travel now, also. I get that. I had to move to the US desert because it helps my pain somewhat–well, way better than the rainy Pacific NW! :-)

    Good to know you! Keep hanging in there and glad you have your family’s support. I don’t, but know how important that is. Take care…
    A :) (glad your appt. went OK, too)

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    • Thank you for the comment! :)

      I sometimes wonder too if dealing with the disorder from a younger age has helped me to cope. I think it’s a double edged sword – I wish that I could have experienced more of life before it was so drastically altered.

      I did have a very hard time at first (and still do sometimes) letting go of the things that I had lost. The older I get the less important missing out on normal high-school and social experiences seems, though sometimes I still grieve for having missed out on so much of my teenage life. Instead of going to parties and prom, I was undergoing surgery and traveling back and forth to hospitals cities over.

      I was 13 when the pain really started to change my life permanently. It took another 4 years before we knew for certain what was causing it. Now, only 6 years later that all seems like a lifetime ago.

      We still aren’t entirely sure which disorder I have; Marfan Syndrome or EDS. Sometimes I think I may have something in between. We know it’s a connective tissue disorder and for now that’s good enough for me – much better than being told it was in my head (which is what they tried to tell me when the pain first started!).

      I’m sorry to hear that you don’t have a strong family support system. My mom is definitely my rock. She deals with pain too so we have an understanding and an empathy between us that is rare.

      I’m always around if you need an ear to listen (or an eye to read as the case may be lol).

      Take care.

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      • Thanks, Katie (and ditto!),

        We are like screwed up cousins in the CT disease circle (lol), although I’ve never met anyone w/Marfan’s to my knowledge. I’m really sorry that this did hit so young, regardless. I think we all mourn our lost life, no matter what our age.

        I thought for sure that you had a Marfan’s Dx, but there is that overlap. Just reading your story it sounds more like Marfan’s (not a doc–just researched both diseases a lot). I know the Canadian system is pretty deplorable, as it is here outside the good cities. I have a blogging friend in NB who’s daughter is sick and going crazy to get a Dx due to the Canadian docs. Her daughter is a teen and she’s @ http://www.sheepinabasket.wordpress.com (if I wrote that right!) if you get bored (very nice woman). I know–other side of the country, but she’s so lost. Not Marfan’s for sure, but they can’t get a Dx and her daughter won’t go online or anything–has totally given up. Well, I think you are so brave and wise beyond your years–I feel like I’m talking to someone closer to my age! I trust having that great mother of yours helps with that…

        Hang in there and I’ll check in on you–trying to not use the laptop as much as it’s killing me (did I already say that?). Lol!

        A :-)

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        • Yes we are like screwed up cousins! lol!

          It made me laugh when you put in brackets how you’re “not a doc–just researched both diseases a lot” because I actually have more faith in the opinions of those who research and have these disorders than in doctors.

          I think most people would assume I have a Marfan diagnosis based on my writing. That’s the stance I took when I started the blog in order to lessen confusion and better explain things. So far I have always seemed to be closer to MFS but the older I get (and the more I fall apart aha) the more I wonder about EDS. My family and I refer to my disorder as Marfan Syndrome for now – for simplicity’s sake lol.

          The Canadian system really does disappoint me. Don’t get me wrong, I’m extremely thankful that our medical is covered (I can’t imagine what we’d do if it wasn’t), but overall there is a serious lack of resources not only for getting disorders like these diagnosed but also in getting the proper or necessary treatments and surgeries. I know a few different young people who’ve needed major spine surgery and have had to go to the U.S. to get it (which Canada will not pay for!) because there are no surgeons here familiar enough with these rare disorders. I was told if I ended up needing surgery for my spine I would have to go to Texas. It’s hard enough for us to get to Vancouver!

          Thank you so much for the blog link! I will definitely check that out!! There’s a foundation based out of Ontario called the ILC Foundation who help young people in chronic pain (they’ve made a huge difference in my life) and have a lot of experience with those of us with tissue disorders (I’ve been connected to several girls close in age to me with EDS through them – amazing support-wise). I’m wondering if her daughter and her would benefit from contacting them. My mom and I have been there; not knowing what was wrong with me and why I was in so much pain. It makes me sad so many other people are going through and have gone through the same thing.

          I’m sorry to hear about your eye troubles. That’s one thing I understand all too well. I also relate to not trusting a surgeon happy eye doctor lol. I’m going to read through your blog more when I’m done typing this.

          You hang in there too.

          Oh and here’s my email too katie.robertson@live.ca :)

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          • Hey Katie,

            You’re so funny! Thanks for the further info, btw. I don’t have a public e-mail that I can get to link successfully to my private w/o pulling my profile (keep a low-profile online due to some crazies out there–not saying you are!). Per my comment, I diagnosed the EDS (did see a geneticist out-of-state) due to getting the keratoconus. If a rheum couldn’t figure that out–plus the rest of the symptoms–then I’m trusting myself more! Haha. I can see EDS on my mother’s side, although she’s more asymptomatic, so that helped, too (I knew my grandfather, who had the Marfanoid body-type that I mentioned). I think that is key if you are able to do that at all.

            Thanks for the info on the center in Ontario. My friend’s daughter won’t connect with anyone so it will have to be my blogging friend. Huge mess! I’ve known Canadians who’ve come to the US for cancer treatment, etc., but they were rich! I would think you could at least go to Seattle if you need surgery (not sure how you’d pay cash), as Seattle has excellent medical centers. I have some MDs in my family who practice/practiced back home. The docs in Van. should know that! Right across the border more or less (2-3 hr drive). If I’m still on here and anything comes up (let’s hope not), hit me up and I’ll ask around.

            Take care!
            A

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          • Thanks for the follow–i have you bookmarked already as I only follow the 1st couple of people I found on here and am on vision overload from that due to the inbox! Try to check on everyone weekly. Oh, the joys of CT disorders…
            Talk soon! :-)

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  2. Hi Katie- I’m new here:) I just found your blog last week. It was a long, painful, & lonely night. Desperate to identify with someone “like me”, I turned to the Internet & found u! Your words & drawings wrapped around me like a blanket. I cried, some tears for me & some for you, & when I was finished I felt cleansed. I closed my eyes & slept soundly. I woke the next morning, ready to gather my strength & begin a new day. Thank you!

    I love the idea of supporting one another. This is quite a network you’ve started! If any of your readers would like to ask me any questions, I’d be happy to share. My eyes are healthy, otherwise, I suffer from multiple painful symptoms of Marfans w/ Dural Ectasia.

    Nice to virtually meet you!
    ~Hope (I’m not trying to be inspirational. That’s really my name:)

    Like

    • Hi Hope! I can’t tell you how much I love getting comments like the one you left – thank you! I’m so glad you got something out of the blog, whether it be someone to identify with or even just something to pass the time.
      I’d love to chat with you more! You can always email me at katie.robertson@live.ca
      Thanks again for the wonderful comment!

      Like

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