My Trip To The ER And Why We've Been Gone So Long

Hey Guys! 


    Rosie here! Just wanted to update everyone on what we’ve been up to since we haven’t been too active online (my bad). For those who don’t know I have been diagnosed with a list of Chronic Illnesses, this means there is no cure and I will have to fight and manage my illnesses for my whole life. At the age of 16 I was diagnosed with Behcet’s disease, Chron’s disease, and Rheumatoid Arthritis and since then my list has grown to include; Gastroparesis (stomach 80% paralyzed), Raynaud’s Arthritis, Ankylosing Spondylitis, Scleritis (causing partial blindness), Sinus Tachycardia, and Major Depressive Disorder. Behcet’s is very rare in young people, in women, and in people who live in North America, but I have great odds…or bad odds?
Depends on how you look at it I guess…😅
So Behcet’s is an auto immune disorder where your immune system attacks your body; in this case specifically small, medium, and large blood vessels as well as veins and capillaries. As a result of this someone with Behcet’s is more susceptible to developing other serious or chronic illnesses. Every illness I have can be linked to Behcet’s including what is mentioned below. This illness is very hard to diagnose for doctors, as there is no test to say if you have it or don’t, they have to asses a variety of symptoms and make a decision based off of that.
[Tip! If you have weird symptoms that worry you, take pictures! It helps your doctors get a better understanding.]

 
    Now on to the story! On Thursday July 20th 2017, I woke up at around 11:00am, this is pretty normal since I have to take a Humira injection every Wednesday night to help with my Behcet’s and the next day can be pretty rough. I woke up the next day feeling pretty groggy, but overall normal, and decided to put on some music to chill before heading downstairs to eat breakfast and take my medication. Then somewhere between 11:30am and 11:40am, still listening to music, I get hit with an intense pain in my chest. It was localized to the left side of my chest and felt like immense pressure; I felt like a steam cooker, but without a vent to let out air. I couldn’t speak or call out for help because the pain was too great. At this point I was grasping at my chest and my limbs were starting to feel rigid and unresponsive. I struggled to get someone’s attention and luckily my sister Mandy heard me banging on the floor with my foot from downstairs. She came up to see what was wrong and immediately told our mom to call 911.


    So there we are in my room, Mandy trying to figure out what’s happening, my mom scrambling looking for the phone, and me in increasingly more pain to the point where speaking is excruciating. At first when my mom asked me if I wanted her to call 911, I stubbornly refused, thinking perhaps the pain would pass and feeling a bit guilty that if it did then calling an ambulance might be an unneeded expense. Seeing me in so much pain though she asked me again, and Mandy guessing my thoughts told me I was being silly and told our mom to call regardless of my refusal, which made me finally agree.


    I guess I was so focused on the pain that I didn’t notice time passing because everything happened very quickly after that. Incredibly quickly when I look back on it.

    The paramedics came up to my bedroom, did an initial assessment, put me on a stretcher and carried me out to the ambulance. During this time my mother had called my uncle, who fortunately was on his way home, and was able to meet us at our house so that he could bring Mandy along with us since only one extra person can go in the ambulance. At this point we still didn’t know what was happening, and thought maybe it was a heart attack or something of that nature. I was taken to the Royal Victoria (Glen Site) Hospital in Montreal and there the paramedics signed me into the E.R. and told the nurse I was above a 10 on the pain scale. So now I’m in the E.R. on a stretcher. I was given morphine and then told the pain was probably due to a small clot that would go away on its own. The nurse told me I could have a CT scan done, but that they didn’t think it was necessary. Looking back, I’m really glad I pushed to have them do the CT scan despite the risks of radiation. When they got the results back I was rushed to an O.R. without anyone telling me anything at all! So I’m super confused and then before they start the operation I just stopped them and asked if they could please tell me what they were doing? The surgeon was pretty surprised no one had explained anything to me and she quickly told me I had a sudden pneumothorax and that my left lung had completely collapsed. They also informed me that they needed to insert chest tubes to let the air and liquid out of the pleural sack in order to allow my lung to re-inflate. I had my first chest tube put in on Thursday and I was 100% aware, meaning I felt everything. It was incredibly painful seeing as they didn’t give me the proper dose of anesthesia (probably due to my tiny hobbit size -.-). They also said the space between each of my ribs was much smaller than normal so I’d be in more pain due to the size of the tubes.
 [side note: When they pop the tube in you actually hear a gush of air come out!] 



    Alright so this has to be the end right? NOPE!
I had to stay the night and I was in so much pain I couldn’t move on my own at all. I had to keep drinking water, but I hadn’t had anything to eat since Wednesday night. Now here comes the fun part. What to do when you have to pee, but you can’t move? Well they have this nifty chair at the hospital where you place a disposable bowl in the center of the chair and sit down on your own rolling potty. My Mom stayed with me during the night and helped me get up and go to the bathroom, since I still couldn’t move on my own. My bathroom was the rolling toilet chair in my room, so ZERO privacy! I think I had at least 3 random strangers walk in on me peeing…. FUNNNNNN times… but seriously you have to laugh at it, or you’ll be dying of embarrassment.

    Friday morning comes around and I’m still in unbearable pain so they send me for a chest x-ray, and it showed that the original chest tube had kinked inside the pleural sack and was now preventing any air from moving. So…back to the O.R.!

     Okay so attempt #2 at this chest tube business. The surgeon first made another incision between my ribs and pushed the new tube in to allow air flow again. After that he removed the first chest tube and sutured the hole up. I was bandaged up and sent home Friday night for rest. I wasn’t able to eat properly because of the intense pain, I also couldn’t move and had at least 5 night terrors every night so I definitely wasn’t getting proper rest. I’d wake up in panics and Mandy would have to peel the sweaty clothes and sheets off of me and calm me down. All hail Mandy the magnanimous! No seriously she really helped me out.

    Monday morning finally came around and I’m back at the hospital, this time the Montreal General, to get my chest tube removed and see how my lung is doing. I was in so much pain by this point I was shaking and still couldn’t walk or stand for long. Of course with my luck on Monday there weren’t any wheelchairs at the front of the hospital so I had to try to walk to my appointment with the help of my mom. I probably wouldn’t have made it down the hall, but thankfully my mom saw a friend of hers who works at the hospital and she got me a wheelchair! Thank you!!!!!!! I was right about to pass out from the pain so that seriously helped.

  The Thoracic surgeon I saw on that Monday was called Dr. Chris Sirois and I have to say, he is phenomenal! He first had to send me for x-rays to see how my lung was and then he yanked out my chest tube. It was so excruciating to have him rip it out without pain meds to help dull it. He couldn’t risk air going back into the pleural sack while suturing the hole so he had to apply a huge amount of pressure on my ribs and using lots of gauze and tape he bandaged me up. The second that the chest tube was out I felt so much better. Dr. Sirois then explained what it means to live with having Spontaneous Pneumothorax. He told me that I have a 45% chance of it reoccurring and I can never go skydiving, climb a tall mountain, or go scuba diving; so there go those bucket list items. I also have to be careful, because every time I want to go on a plane to travel somewhere it’s a risk that my lung may collapse while I’m on the plane. I can still have a very full life though! 😜 It’s all about technology guys! I can use Virtual Reality goggles to experience scuba diving or skydiving, I can also make sure I take shorter flights so my risk decreases for travel. It’s 100% manageable and it won’t stop MaRo. It’s a long recovery time, but we’re slowly getting back into it. So stay tuned for more comics and posts. Till then –

Stay Obsessed ~