It has been a very long time since I last blogged here and let me tell you it was not for no good reason. For the past month and a bit I have gone through the worst health crisis ever to date (as if that was possible) but somehow made it through alive!! Most of you already know the details as I have kept up to date through social media, but I thought it would be good to get back into blogging and provide a sort of summary of my adventure over the last several weeks.
So, grab a tea, sit in a comfy chair and get ready for 2017's edition of: Aidan Almost Expired!
It all began on a blustery evening in February. It was 100's Day at school and of course I went all out!! I love any excuse to dress up in costume and have fun and 100's Day is no different!! It was a long day and I was in a lot of pain from my sciatica, but had made it through and after school was hosting Boy's Club in my classroom with Meghan and Marsha. I was tidying up some mess, bent over sideways to reach a cup on a desk and heard a loud crunch and felt a very painful pop from my left side. I was a little in shock but was able to murmur "I think I popped a rib!". Now, just picking up a cup wouldn't normally illicit such a bodily reaction so I shrugged it off and but went about the rest of my evening in a fair degree of pain. I worked the next day (a PED day thankfully) in increasing pain and now, I was starting to feel kind of flu-ish too. I went home, cancelled my dinner plans and basically went to bed at 6. The whole weekend was spent then expelling all bodily matter from both ends, I was unable to keep anything down or in and all while losing mobility from the pain on my right side and aggravating my rib from throwing up on my left side.
I was a mess. I started to feel a little better by Sunday night but by Monday morning I was worse. I went to the clinic and they pumped me full of fluids, gave me some electrolytes to take home with me and assured me it was hard to break a rib from bending over to pick up a cup, but that even if I did, there wasn't much I could do. I took a couple of days to recuperate but I still wasn't improving so I went back to the clinic and the doctor there was concerned that I was so dehydrated that I may had done some damage to my kidneys, so on , so on Friday they medivaced me to Chisasibi hospital where they kept me for one night, pumped me full of fluids and sent me home the next day. Of course that was not without problems as on Saturday my flight was cancelled and I had no way home until a great true and kind friend Aaron and his work pal came and picked me up on their was home from Radisson and drove me home!! Thank god for good friends. A theme in this tale. So I stayed home from work for a few more days and tried to rest. By the end of the weekend I was extremely weak, having trouble breathing, keeping nothing down and starting to show signs of internal bleeding (if you catch my drift). Monday morning I was almost completely immobile from pain and weakness and was forced to call an ambulance to take me the 1 minute drive to the clinic as I couldn't walk or drive myself.
At this point the doctor and nurses became very concerned with my symptoms and recommended I be medivaced again to Chisasibi but this time we had cut it too close and I wouldn't have made my flight. So Meghan, the true incredible selfless friend that she is, drove me all the way to Chisasibi in my altered and very sickened state. Nurses were skeptical about my ability to make it through the long trip but it was a good thing we decided to drive because I was having tummy trouble and made use of the side of the road and Meghan's emergency toilet paper!! It was at that point that I knew I was probably dying. We arrived in Chisasibi where I was quickly diagnosed with C Difficile, a notoriously difficult bacteria that hides out in the guts of people who have compromised immune systems usually from being on antibiotics for a prolonged period of time (heller I had JUST finished 6 weeks of antibiotics for my zombie finger a few weeks prior, so that made sense). What didn't make sense was that I was pooping black and I had an extremely low haemoglobin count (about half of my blood appeared to be missing) and I was swelling up fast in my abdomen and legs/ankles/feet. Chisasibi did what tests they could and immediately placed me and Meghan in quarantine as I waited for a medivac to Montreal. Things were beginning to look a lot more serious than just a bad flu and I was getting scared but was now in so much pain on my right side (sciatica) that it was consuming me. I was not getting adequate pain management and was in such complete agony I could no longer move in bed or to even use the bathroom. Meghan stayed with me for two nights, seeing me at my absolute worst, (and best, using my finest flirting skills on the handsome young doctor), helping me to use a bedside toilet, fixing my bed, getting me forbidden secret water (in case I needed surgery they were having me fast) and soothing me through a pain-induced panic attack. I have somehow stumbled upon the greatest friends in the world, don't ask me how! I was given 3 units of blood in Chisasibi to try and make up for the massive blood loss but the doctor decided not to give any more because a) they only had 6 units in the hospital and b) it was really only a temporary bandaid and they needed to find the cause of the internal bleeding.
Anyways, after weather-related delays (what else is new!!!) I was finally medivaced again by tiny plane to Montreal General Hospital. At this point I was completely delirious from pain and illness and lack of blood and oxygen, I had no idea what was going on. I was so dehydrated my lips were cracked and bleeding. I was begging the flight nurse for water which he of course had to refuse me. When we landed in Montreal I was taken to Montreal General Hospital where I was greeted by Marsha (who luckily happened to be attending a conference in town) and Monika (who was on her way up to Wemindji to start some supply work!!). It was really wonderful to see some familiar faces as I was extremely ill and very scared and tired and all the things. They stayed with me for a few hours in the emergency room (which resembled a war zone) and also helped me re-hydrate with the WORLD'S BEST ICE. I spent the night in the ER and then was moved due to my C Diff. diagnosis to a private room. I had to get a catheter put in (which was far less unpleasant than expected and quite convenient since I could no longer move my lower half due to pain). I spent I have no idea how long in the ER waiting to be moved upstairs but when I finally was I was told I had a UTI. OK that's fine I thought, I can handle C Diff and a UTI and while I had never been in this much pain from sciatica before, I knew eventually it would subside, or so I hoped. They were concerned that I was pooping black though and I was taken for a scope to have a looksee inside my belly. This scope revealed that I had a bleeding ulcer, likely from the incredible amount of over-the-counter painkiller (Advil and Tylenol) I was taking to get even minor relief from my sciatic pain. That explained the black poop and blood loss! Ok so lets keep track. I now had a bleeding ulcer, a UTI, C Diff and chronic debilitating pain from sciatica, oh and a hurt rib.
At this point I asked for my mother ahah. I was really sick and needed her to comfort me as well as make sense of all the test and results and questions I was being asked. She arrived a day later which was a huge relief. Doctors and nurses were baffled as to the cause of my pain as well as the intensity of my infection so they ordered a CT Scan of my abdomen. This scan revealed that I did indeed have a fully broken rib on my left side, small kidney stones on my right side, a completely blocked ureter on my left side causing a very serious kidney infection, as well as *drumroll please* a pelvis with 3 different fractures of various age on the right side. WHAT!?!!? WHAT@?@? So that explained all the pain that I was told was sciatic and nerve related. The fact that they were of different age and in various stages of healing meant that I had been living with this pain for some time (I estimated about 3 years which is when I started going to the clinic in Wemindji for it) and never really healing because I had always been working and not taking the time or necessary therapies to help myself heal properly. It was scary but relieving to know that my pain was real and that I could start to recover now that I knew what the problem was. Now to deal with the rest. I was immediately put on medication to help heal the bleeding ulcer and kidney infection. I had a procedure called a nephrostemy where a tube is inserted into the kidney and led out through my back where it would empty the urine into a small bag instead of through the bladder. This was performed because of the 2cm kidney stone that was blocking the ureter into my bladder. Having a tube and a pee bag attached was not pleasant but necessary since kidney stone removal surgery was not an option at that point, I was too unhealthy. At this point I was flabbergasted at the problems I was being diagnosed with, I was also black and blue from being poked and prodded for multiple IVs and blood draws.
At this point the various diagnoses of past and present were starting to pile up and MGH being a teaching hospital, there were many students, residents and doctors now on the case. Around Christmas (the time of the great finger drama) I was diagnosed with high blood pressure, high cholesterol and pre-diabetes. If you remember, I was also having a hell of a time fighting multiple infections in my finger and the fact that I even got Flexor Tenosynovitis in the first place was a mystery to all. Doctors started asking questions about everything hormone related. Menstruation cycles, hair loss, weight gain, mood swings, skin and bruising, it all started to click for someone on the "team" and a diagnosis guess was made. But first, I would have to have an MRI and a special blood and urine test to check my cortisol levels (the stress hormone). So I had an MRI on my brain to see if there was a tumor on my pituitary gland. If there was, then it would be confirmed that I had Cushings Disease. If not and my cortisol levels were still high, it would be Cushings Syndrome, the same sort of problem but to a slightly lesser degree. Well folks, the test and MRI revealed that I did in fact have a small tumor (1.8cm) on my pituitary gland.
Now I will explain what that means and what Cushings Disease is. When you have Cushings Disease, a tumor on the pituitary gland causes the adrenal glands (located just above the kidneys) to produce too much cortisol, essentially messing up everything in your entire body. Cushings is a hormonal disease so everything down to my hair is affected. That means that these problems I had encountered over the last 5 years or so (the doctors guessed that I had the tumor for about that long based on the level of cortisol in my body), could be explained by the over-production of cortisol and malfunctioning of the adrenal glands. Ready?
-frequent swelling of ankles and feet
- hair loss
-extreme bruising and thinning of the skin
-kidney issues (as the adrenal glands are located right above the kidneys)
-headaches
-"Moon Face" aka my face got fat
-slow to heal
-"Buffalo Hump" a small hump on the back of my neck - ew
-prone to strange infections
-arthritis (I have this in my spine)
-loss of menstrual cycle
-high blood pressure
-high cholesterol
-type 2 diabetes (and I went from pre-diabetic to type 2 diabetic in a month despite adhering to a strict diet)
- really deep and wide stretch marks (I had gotten these a few years earlier so they were mostly faded however my hormones are so out of whack, despite actually LOSING 17 pounds in the hospital, I developed a whole new set of purple stretch marks on my abdomen which was really pleasant)
-intolerance/sensitivity to heat (I don't think my new teaching partner knew me not-sweaty lol)
-smaller legs and arms compared to the rest of my body
-something called "central obesity" which is where the fat is primarily located in the abdomen and not proportionately distributed over the whole body.
- rapid weight gain (I put on about 100 pounds in 4 years) due to the body's inability to metabolize carbs, proteins, fats and sugars, fat is instead actively stored and harvested, going against all my wholehearted efforts.
- OSTEOPOROSIS. When I learned I had osteoporosis which caused the fractures in my pelvis and rib, I cried. I knew enough about the condition to know that it was serious and I had to really be careful to not do any more damage to my poor body. With the right treatment some bone loss can be regained but it'll be a long work in progress! I was also scared to think about what I should avoid doing again to never be in the kind of pain I was in with my pelvis, if I didn't even know what it was I did in the first place! Since osteoporosis and Cushings also gives you bone pain, I think that my body had reached its ultimate limit of pain threshold (keep in mind I had no idea I had a kidney infection or an ulcer) and just gave up, thus opening the pain floodgates and exposing me to all the glory that comes with 3 fractures in ones most interactive part of the body. This pain left me completely bedridden and forced me to take some pretty heavy but necessary painkillers. I am now the proud owner of two hand crutches for stability and support while walking! After 2 weeks the nephrostomy tube was removed from my back (which was great because it leaked constantly, giving me the worst rash and I couldn't sleep on my side) and instead a procedure called a "Double J" was performed which meant inserting a tube into my ureter, creating a stint from the kidney to the bladder. It was also supposed to help move along the kidney stone from the ureter into the bladder for easier removal. I do not currently know the status of the stone or where it is as I am waiting for my appointment with a urologist here in Oakville.
With all these things being explained by one single diagnosis, I was actually relieved! I had spent weeks in the hospital with loads of medical professionals working day and night trying to solve this mystery and finally I had answers!! And what was even greater was the fact that with one "simple" surgery, having the tumor removed through my nose (Ahh!) most of the issue would start to resolve themselves and my body would start to heal!! I would need little to no intervention post surgery depending on my hormone levels post-removal. Of course since a lot of these issues are serious enough on their own, they will need further treatment and follow up care, but for the most part, I have been told that the body is a magical thing and I can expect change to happen on its own without further intense medical intervention.
In all I was in hospital and rehab (I was discharged from MGH after 3 weeks and sent to a rehab to work on learning to walk again) for 4 weeks. Desperate to come home (my mom had to leave Montreal after a few days of staying with me to return to work), I checked myself out of rehab and flew home BUSINESS CLASS courtesy of my kind and generous Auntie Melanie. I was going crazy in the hospital due to a lack of human contact, something to do and the food was actually so terrible I was literally starving to death. By checking out early and leaving the province however I interrupted the flow of care and forfeit all my consults with various specialists. So upon arrival to Ontario, it became my family doctor's job to find me all new doctors.
So that is where I am at right now! Every day is better with pain and mobility with my pelvis, I am fighting a new infection but doing ok, I'm taking every pill known to man and its doing a number on my stomach and overall well being but its necessary and I am committed to doing whatever I need to do to heal and get healthy!! I am really looking forward to having a body that is working for me and not against me and living a brand new healthy life!! I have so much support from my family, friends and work that I know once I get these surgeries (kidney and brain) I can really start recovery and enter into a new era of my life. That is so exciting for me. Until then, I am on a medical leave of absence from work and Monika has taken over my class which is so amazing. I feel little to no stress knowing my bb girl is in there fighting the goo fight and giving these kids an amazing education and maintaining the class just as any absent teacher would hope. I miss my friends in Wemindji terribly but they have been so good at keeping in touch with me and filling me in on everything I am missing. Through this experience I was touched by how many people reached out to me, communicated to me, expressed concern and love for me. I needed it ALL. It was really hard being away from anyone I knew in a strange city, locked in my room in isolation due to C Diff. and worried about the future. I tried to entertain myself through complaints about food but in the end it was the people who reached out to me that saved me. I am truly lucky to have the greatest friends both near and far who helped me through this truly frightening and life-altering experience.
Now that I am able to sit up and I am doing more than staring at a ceiling with an IV pole attached to my arm, I hope to be able to update a little more often! Thanks for checking in!
***I should mention that during this time, MY FINGER FINALLY HEALED!! Almost 4 months to the day, my finger finally closed up and I am now proud owner of a witch's claw.
http://pituitary.ucla.edu/pituitary-adenomas
