I should start by saying I am perfectly alright, and that us spending an average of 5 hours in ER each visit was not a reflection on the medically seriousness, but on how awfully inefficient the medical system is in Canada.
Basically, I was having a lot of strange sensations and pain in my arm, around Christmas, so on Boxing Day we went to a walk-in clinic. I get a warm fuzzy feeling when I enter a clinic, and the friendly receptionist in designer scrubs greets us. The thrill of familiarity of checking boxes of symptoms and filling out my name and Care Card # (which I need hardly point out I have memorize?). The smell of kill-everything disinfectant and hand sanitizer. Okay, I joke. Those are all the things that really BUG me when we go to a walk-in clinic. Except for the friendly nurses :).
We were hoping to not have to go to the ER to have my arm checked out, and instead check and see if I had an infection or something. I have been feeling quite ‘low’ lately, sometimes an indication of something more going on than the Lyme. This doctor was, like, actually a wonderful doctor. We usually have to demand a basic CBC (blood profile), just to make sure everything is normal while I’m on the drugs, but it was like this kind doctor actually got it. I wasn’t the weird, trouble-making, difficult patient that some doctors seem to think I am. Meeting wonderful doctors gives me such a feeling of hope for the future. I know now that there are some excellent physicians out there, and once the BC CDC takes the heat off doctors trying to help Lyme patients, I think there will be loads of helpful doctors waiting to look after us all.
The doctor at the clinic was so nice and sent us to the lab at the hospital to get tested. That was when we discovered that my line wouldn’t aspirate blood (ie: we couldn’t pull blood out of the PICC Line). We could flush through saline just fine, but no luck with the blood. So of course, the way you solve all simple, little problems in Canada is to head to the ER. It is very frustrating for everyone (especially the staff and patients!) to have to wait so long for non-emergency care, but it’s the only way to get something done reasonably quickly. After a long wait, the put some TPA into my line, which is a kind of magic fix-em & clot-buster. It takes an hour for the stuff to work, so there was much knitting and audio-book listening. Well dose #1 didn’t work, so they sent me home that night with another dose in my line, in the hope that my line would clear up.
The next day…still no blood. “Hunh? This is funny…It usually works.” was the response. I hear that a lot though :P. So I had another dose (hours of waiting occurred in-between first seeing the IV nurses, and getting the TPA, and then them trying to take the TPA out. I condensed all that waiting into a few lines…lucky you guys!). The line turned out to be good an blocked, and we couldn’t get any blood for the blood-test, or for any other reason. The doctor was kind and a good listener, and suggested that we should pull out the IV line. This usually wouldn’t be a problem. They’d just put another one in and I’d be find to do my meds. But with no doctor in Canada willing to put in a PICC line for treatment of Lyme disease, this wasn’t an option. The truth is these lines are expensive, and I have been sick for so long and it costs so much money; how would we get another line? We explained the situation: how we couldn’t get any help here, and that this IV line was the only way I would every get better. He let us go home, telling us that someone would get in touch tomorrow about coming in for a dye-study, to see how the line was blocked, and if they could fix it.
It was much to our surprise that the next day we found ourselves in the imaging waiting room. The whole afternoon had a shiny, surreal feeling to it, as they kindly settled me into the clean room, politely asking which PICC line we’d like (so of course we chose the purple and blue one! ~kidding). They even managed to put the new PICC line in the same site as the old one, something they apparently hadn’t done before. They injected a little dye to help them see inside my body. Then there was a lot of poking in my arm with guide wires and several staff powwows before they got everything in order and slapped a clear dressing over everything. They sent me home with tons of extra dressings and such.
I was resting peacefully at home for about 6 hours after. The pain creeped up on me very slowly until I could not ignore any more the agony in my chest. Pain thrumming in my chest, making it difficult to breathe. I tried to articulate how I was feeling, but all that came out was slurred, broken sentences. So it was back to the ER again, with our mind on the possibility of a blood clot. I have to chuckle, even with the pain, as we explain to the intake nurse, that, no, we haven’t moved in the past 24 hours, and our contact information has remained the same.
Pain escalating, radiating from my chest around the back of my ribs, down my legs. Belly cramps. The pain was beyond my control, something that despite all my peaceful breathing I couldn’t think myself out of. They didn’t know what was wrong there, but gave me an IM of ketamin, a pain drug/low-dose anesthetic, which calmed things right down.
It wasn’t until we got home that we had time to put a couple of repeating patterns into a more succinct hypothesis. I have had severe chest pains before after having contrast dye. After MRI’s, after my CCSVI therapy. The symptoms, the way the pain traveled, was almost identical to those other times. So hopefully this means no more dye for me. It has always made me feel ill inside. Tight in my chest.
But on the bright side of all this, I have a Canadian PICC line poking out of my arm. A PICC line that was put in here means they have to take care of it. Wow. A true miracle, yes?
larkspur funny farmJanuary 21, 2012 at 3:14 pm
My Dear One – I so sorry to read of the troubles your body and mind had to go thru but I am glad that all was resolved. I am always keeping you in my heart, prayers and sending your healing light each day. From all the furry family members and I we hope the coming weeks are full of great health. Please stop into my blog this week if you get a chance I have a Baby Naming Contest for our newest birth at the farm – a Baby Llama Girl… Hugs from GraceReply
NicoleFebruary 4, 2012 at 2:58 am
thanks so much, sweet grace :). your well-wishes worked! belly rubs for all your friends (And hugs for you!). thanks for the tip-off about the naming contest. so much fun. what a beautiful baby girl…congrats!Reply
NicoleFebruary 6, 2012 at 12:18 am
I’ve found (and then forgotten about) your blog a couple of times, but I’m in a couple groups with your Mom (lol) on facebook. I just wanted to say I am SOO happy you got a Canadian PICC line, and also I’m glad you’ve shared your story on this blog and with CTV and other news papers. I got Lyme disease when I was 18 and got diagnosed at 20. I’m 22 now (almost 23) and hope to be off antibiotics before I’m 24. I was EXTREMELY lucky. I had started getting lost in the alley behind my house, forgetting people I had done homework with for a year (yikes! That was an embarrassing one), but those had not yet become common, and I didn’t have excruciating pain. It was stories from people like you who encouraged me to not waste another year fighting with the Canadian medical system and just go see a doctor in the states. I don’t even know where I would have been if I’d just waited a couple of months. The whole Lyme disease thing can easily sound like a conspiracy theory, but stories from real people who have faced these issues and still talk about them make it seem less crazy.
I can’t imagine how tough it would have been to be sick when still in High School. I was lucky that I had graduated when I got sick. (I also did IB in High school though!). It made university heckish, but at least I’d been able to get through High School. If I remember correctly though, you graduated anyway (good for you! I know that must have been really tough). Whenever I am feeling down, I try to tell myself that if I could get through Lyme disease, and I can do pretty much whatever I want to do with the rest of my life- and you can too (and probably way more than me…)
Keep on fighting, and keep on enjoying the bits of your life that you will slowly get back!
P.S. I am a Nicole too!Reply
NicoleFebruary 6, 2012 at 5:57 am
nicole…thank you so so so much for your beautiful note. this was just what i needed today :). i sometimes laugh thinking what i’ve been through and think ‘boy, after this, won’t everything seem like a breeze, or at least i’ll have the patience to push through any obstacle?”. i’m sure you can totally relate. where did you go to school? ahh we seem to have so much in common? how are you doing? if you have time can you drop me an email…my blog email is email@example.com :). best of luck 😀
Troy HeatMarch 6, 2012 at 8:37 am
A true blessing in disguise.. Thanks for sharing. Hope all is well NicoleReply