Wednesday, 31 December 2014

Frustrated but improving

I've made it. I've made it to the 7th floor, officially off continuous monitoring and no longer need continuous nursing support. This is a big step and how do I feel? Absolutely exhausted.

This latest "hiccup" or "bump" or whatever you want to call it, with the incision being infected, has frustrated me to no end. I'm super bummed. I'm so tired of these setbacks that everyone seems to claim is normal but yet, when the entire team of doctors want to see your wound, I start to be suspicious of how "normal" these things are.

I know I'm suppose to be grateful for my new lungs and pumped about everything. And I am. But I'm also mad that I had to go back to the OR. I'm frustrated that I was woken up yesterday and told I needed to try to pee and when my body refused, the nurse had to reinsert a catheter (great way to start my 28th year). I'm frustrated that I have another drainage tube as it's just something else to worry about ripping out in the middle of the night. And I'm frustrated that I've been started on three very strong antibiotics that to make sure that no other part of my sternum gets infected.

Anyone else want to scream in frustration with me? Except I can't scream because they did yet another bronc while I was under on Monday and my throat is raw.

On the positive side of things, my lungs are doing well. I'm on very minimal oxygen which is super encouraging. I even managed being off it yesterday evening and didn't freak out. My stats stayed okay until I was given Benedryl (due to my reacting to the antibiotics) and then my lungs decided they were tired so I had to put it back on. Today, Isaiah and I went for a walk and we had done one lap before we realized we forgot to connect my oxygen up. Clearly I'm still super panicked about wearing it. I think it was just too early for me last time and now I've been weaned me off it slow enough that now I feel more confident without it.

The other good news is that I'm now on regular liquids. Yay! Everyone can now flood me with lattes and other delicious drinks. I mean, I can only take a sip at a time and it takes me forever to get through even tiny apple juice but flood away! The swallowing is getting easier but it's still a struggle. My poor throat has been abused a lot and also doesn't know what it's doing after so long. Shockingly, I somehow managed to find a way to swallow nibbles of the birthday cheesecake that Isaiah smuggled in for me.

I've had many improvements in the past two days, I've moved to the 7th floor (another mad chaotic move that involved nurses throwing my stuff randomly into bags), I've started eating more, I'm able to make a small cough-like noise (it's amazing that after years of coughing, now I can't muster one up), and I used an actual bathroom for the first time in over a month!

So many improvements that I should be psyched about but yet I just want to lay in bed and have a pity party for me. Perhaps I'm just overwhelmed with all the changes or maybe part of me just realized I haven't had fresh air in over a month...or a shower. Oh sweet shower. I just need to focus on the improvements and not the fact that my incision is now a giant open wound with a vacuum machine attached to it. Argh! No one ever mentioned this being part of the transplant process. Stupid transplant manual.

To change the topic, I hope everyone is having a enjoyable New Years!

Monday, 29 December 2014

What's one more surgery??

Greetings Alley blog readers,

This is Amy, giving an update for today.

So, unfortunately, the ct scan that Alley had yesterday showed that the bone is infected. The doctors swarmed her this am to give her that fun news. So, after waiting for the day, she got into surgery around 530pm today.

They ended up taking out 1 cm of her sternum due to infection. They also did a bronc while she was put under to clear out any secretions in her lungs. The doctor said that they were leaving her chest " slightly open" to keep an eye on things. So, because of that, they put a "vac" dressing on it. This is a little vacuum dressing which makes a seal around the wound and sucks all the fluid out. It is supposed to help heal it faster. Alley is also now on a iv pump for pain where she controls it by pushing a button for the next little bit.

She did return to her room in step down though, and is back on just some oxygen, as she was before. We will probably get more of a plan/more info tomorrow. She will still be on antibiotics for awhile as well.

Hopefully this will be the last fun complication I will post....we are all going to burn and dance around the transplant manual when this is all done.....

Sunday, 28 December 2014

A Day in the Hospital

Medical stuff: during the bronc yesterday, they opened up part of my incision where it had been oozing and got out most of the ooze. They are still concerned it's infected (I don't know when I'm repeating myself anymore) so along with the antibiotic I started a few days ago, they are sending me for a CT scan today to make sure there is no infection in my bones. The wound care nurse is all over the site and actually sounded excited today when talking about the various options they could use since I'm allergic to their go-to dressing. In lung news, they apparently sound much better but they carry on with the Lasix to make sure every hydrated part of me is gone.

Now that the medical part of the day has been reviewed, I thought I would answer a general question I've gotten several times "how are you not crazy bored all the time?" Well imaginary person, here is how my days in the ICU were spent (I'm describing a good day when I wasn't sedated or losing blood):

I would wake up 630-8, usually on my own, sometimes by a nurse, often by the x-ray technician for my daily x-ray (cancer from radiation is not a concern on this floor). The nurse would do her morning assessment, then the parade of doctors would start (I have a different team of doctors for lung, GI, infection, and transplant, each team has their own staff doctor and set of varying level residents and most of them want to see me at some point), each of them to stop to tell me what they were thinking for the day or if any results came back overnight.

By this point in the day, a family member had usually showed up and I would go for a walk with physio or sit up in the chair. All the other various professions usually showed up some point before 11.

Then I would basically hang out with family for the day while doctors came in and out and procedures were done. After the visitors left (whenever they were starving enough), I might knit for a bit or (most usually) play on my phone until the night nurse would do her nightly assessment. And then I would relax for a bit before sleeping.

Just like that, one day in ICU.

Yes, all the days blend together. However, I was rarely bored and thanks to my family, I was able to keep my mind off the hospital setting and on other activities.

Today was honestly the first day since surgery (that I was conscious), where I hadn't had a visitor by the afternoon. I say that not to make you feel sorry for me today, but to say that in the past month, I have been blessed with having people who love me enough to sit by my side while I was passed out, and awake, day after day when nothing ever really happened. I've heard enough stories to know that isn't always the case.

I love you family and thank you so much for dropping everything and being here for so long with me.  I never would have survived trach masking or without you being there to play games and make countless amounts of cards with/for me. This honestly would have been hell without you having been here.

I realize that yes, I'm still in ICU step-down and there is still a long way to go before I'm home. The one difference is that now I feel more able to self-entertain when no one is here. I'm able to harass my nurses into getting my stuff for me and able to focus for more than 10 sec on one particular activity. I still need to figure out how not to panic without oxygen and learn how to breathe properly.

I guess the point of this rambly post is that no, I'm not super bored. And thank you family for taking such good care of me.

A long post about a long night.

So it turns out that removing the trach isn't quite so magical all the time. Boxing Day night, I slept well for the first half only to wake up feeling as though I had to cough. Problem was, my muscles for coughing still haven't really come back yet. Plus I'm not entirely sure how to cough with these new lungs. I was still able to breathe fine, it more just felt as though there was an irritation in my lungs that I needed to clear.

I kept trying to clear it by coughing, enough to the point where the nurse came in and told me that my stats were fine, it wasn't something necessary to focus on, try to sleep, etc etc... It was a too little, too late speech. Because then, all I could think about was getting rid of the rattle in my lungs. Before this night, when I had the trach, I would "cough" ( more of a huff of sorts) everything as high in the lungs as I could and then it would be suctioned out (a event that literally involves a suction tubing that they stick in the trach and suck up whatever is in the lungs while I cough madly due to the irritation of a suctioning tubing being in my chest...what fun new experiences I've had in the last month).

However that night, my first night without a trach, I couldn't simply get suctioned to get rid of the crap. I was determined to cough it out myself. However, since I couldn't, and I couldn't seem to just ignore it and go back to sleep, I kept trying, which than totally exhausted me which than decreased my oxygen saturation's.

The respirologist was called in and initially she tried to suction me through my nose but that was a huge failure (mostly because I freaked out when she kept getting me to swallow the tubing. Do you people not understand what a gag reflex is?!)so then she moved to step 2: recanulate (aka put the trach back in). First she suctioned through the little opening that hadn't healed on my throat and then tried to shove the large size trach in the hole. Too small. She moved to the size I had when they decanulated (aka took trach out). Nope, still too small. As her last chance, she tried size 4, the smallest size. Still too small. That's when she decided to just crank up my oxygen and re-suctioned, and left a note for the drs to recommend that I get the trach back in during my broncscopy.

All of that happened in the span of about an hour. Needless to say, I did not get much sleep that night. In the morning, the drs came around to confirm that I had a bronc around 930-10 and that they might put the trach back in. As much as I didn't want it to happen, I've reached the point where if it's necessary, it should be done. It's not as though I can magically force my muscles to work immediately (Is this maturity or giving up?)

They did the broncscopy and put me into a wonderful sedated sleep mode. I woke up several times afterwards when they were cleaning everything and I'm sure I paranoidly ask the dr if they put the trach back in every single time. And no, they decided not to. Yay! One of the drs started to tell me during one of my awake periods how much and what they got out of the bronc but stopped when I fell asleep.

I awoke around 1pm to my nurse telling me it was time to get up for the day and once the initial grogginess passed, I felt a million times better. There was some combination between the bronc and the sleep that made everything click together.

Whatever they sucked out of my lungs during the bronc has totally changed the feeling of my lungs. They feel as though they are now one piece. The best description I have of how they felt before was that when someone asked me to breathe deeply, it took me several seconds because I felt as though I had to activate each lobe separately. It was especially true of the lower lobes.

Now everything is working together. It's as though they made all the pieces work as one. The best analogy I have is if you moved your arm as if to slap someone only you could only do it by moving first your shoulder and then the elbow and then the wrist and finally the hand. Then the doctors do a bronc and now you can move your arm in one solid motion. It's so much easier! Especially for deep breathing.

After waking up, Isaiah and his sisters were here for the day and we played my new Christmas game from Isaiah for the rest of the day. Before leaving, Sarah decided it was time for a my hair to be washed. Since I never refuse one of those, we piled up the towels and went to it. Despite our fears, it was actually the smoothest hairwashing I've had yet. Yay clean hair!

Felt. So. Good. 


Saturday, 27 December 2014

Happy Boxing Day!

(I wrote this yesterday...)

Happy Boxing Day!

I'll just preface with the medical updates: my chest incision site has been oozing for the last week or so but no one ever considered it a problem. Until today when a doctor decided that the second half of my staples should come out ASAP, as in, 10 sec after making that declaration, (ASAP either means right this sec or sometime in the next day or so) and that the ooze should be sent off for a infection swab (due back in 2-3 days). In the meantime, they have started me on a antibiotic. I also have my one month post-op bronchoscopy scheduled for tomorrow. Yay for medicated naps...?

The exciting part of the post is that my trach is out! Yay!!! It came out this morning with the help of one RT, one nurse, two Ativan, and a lot of mantra self-chanting. Isaiah showed up seconds after it was done which was the perfect distraction. We tried to go for a little walk (because I'm allowed to do those now with family!) but my stats dropped too much before we got one step. Instead we half heatedly played cards which turned into Isaiah reading to me which turned into a giant day-long nap for me.

It was so necessary. Yesterday, was way more overwhelming than I had been expecting. I think it was a combination of the stress over the fact that my trach could come out, my room being crazy warm, all the new changes with food, and all the visitors showing up with massive amounts of presents that stressed me out. I'm sure the lack of sleep, food on hold, and a plethora of other reasons also added to the stress.

Whatever the cause, the trach was suppose to come out at 1130 yesterday and so I immediately had a panic attack around 1115. One that took me a really long time to work my way down from. I had a glorious Christmas Day nap which seemed to help everything. It's amazing how much sleep can cure all. During my nap they decided the trach removal would be pushed to the next day. I think that also helped calm me down too.

So that is all that happened medically. Psychology, I felt as though I failed. I realize it a total irrational response and every nurse has given me a lecture on how normal it is to be anxious about trach removal or any other hospital procedure. I'm so annoyed at my brain for freaking out about something so routine. I've had much crazier things happen and it doesn't bother me at all. Why on earth would that have been the cause of panic? I realize every person with anxiety is saying "yup, that is how it works." To those people I say, "I have great respect on how you manage life. This seems acute and situationally based. I can't imagine dealing with it all the time."

But yay!!!!!! Trach out!! One less thing to worry about. I'm breathing on my own/with oxygen.

[For those wondering how they take it out, the RT literally just pulls it out of the throat and sticks a gauze and bandage over it. Actually, the RT just stuck a large bandaid over it. The nurse afterwards stuck gauze and tegiderm (fancy bandaid) over it, creating a seal so I can talk slightly as long as the seal doesn't break. Pretty minimal for something that freaked me out so much.]

Wednesday, 24 December 2014

Happy Christmas All!!

Merry Christmas! This Christmas may not be ideal or anything I had ever imagined but it will sure be memorable. I've had Isaiah and his sisters and some surprise visitors (Isaiah's brother and fiancé also showed up!) and have been skyping with home so I feel very much surrounded by family and love (and booster juices as I had 2 today...continues to be the best thing ever).

As Isaiah's sister, Sarah, keeps saying, "this Christmas is a whatever happens, happens, year. We'll figure things out as they go." It's a good mantra to have this year or any other year really.

I hope everyone has a wonderful few days with friends and family and time out to relax.

Tuesday, 23 December 2014

Swallowing is so hard but yay smoothie!

Things are holding steady in step-down, the water medication is working well. My lungs are drying out so everyone, including me, is very very happy.

Since I did well on the corking and my voice is getting stronger, yesterday the speech language pathologist (SLP) was here for a swallow assessment. It consisted of analyzing tongue and throat strength, chewing ice chips, and swallowing a few teaspoons of water. I did well enough on that assessment that I was allowed 12 teaspoons of water an hour.

I realize that doesn't sound like anything but it was pretty magical to me. To be honest, when the speech pathologist had me swallow the first teaspoon of water, I thought I was going to sink into the floor out of contentment. I sucked back my 12 teaspoons of water all day very very happily yesterday.

Today, I had part two of the swallow assessment which consisted of a Videofluoroscopic Swallowing Study. Basically, I went down to this room where I was placed behind this xray machine and was fed different types of liquids and soft foods. The food was laced with barium so the SLP could watch in real time how the food went down my throat to make sure nothing was going into my trach and that my esophagus flap was working. I was told by my visiting cheering squad that it was crazy interesting to watch as he could see everything on the monitors.

The SLP would put the liquid or soft food in my mouth and I would hold it in my mouth for a few seconds before being prompted to swallow. My first few times were pretty rough but then I kind of figured out how to slow down (aka not have an anxiety attack) and focus on what I was doing. I especially slowed down when she started putting the soft food in my mouth like apple juice and apple sauce as it tasted so good, even with the barium. All went fairly well but it did take me several swallows to get down the stickier foods. Thankfully I didn't aspirate on anything.

The result of the assessment was that I can have soft foods and thick liquids. I know that doesn't sound awesome but it is exactly what I expected. Much more excitedly, thick liquids = smoothies!! The SLP had a bunch of guidelines for me to follow that I barely listened to due to the smoothie excitement. About 5 min after the SLP gave the okay, this was in my possession:



My Christmas smoothie! It was divine and sublime and heavenly and everything I had been dreaming about the last 3 weeks. Due to the SLP restrictions of 'swallow intentionally only' and '3 swallows for each spoonful', I only made it through half of it before it melted too much that poor Isaiah had to finish it for me. But who cares, I had actual food!

I want to leave this post on a super happy note of "yay I had a smoothie, my dreams have come true" because that was the majority of my day. But then supper arrived and my excitement of food came crashing down. I realized how hard it is swallow actual food. Stupid applesauce and mashed potatoes. It tasted amazing (I wonder how long my tastebuds will enjoy hospital mashed potatoes), but after a few small bites, I was super tired.

It is probably good that the SLP talked so much about the importance of non-passive swallowing otherwise I would have probably asphyxiated. It was super discouraging. Especially when I think about how the doctors and dietitian won't wanted to take out my nasal feeding tube until in eating the full amount of calories. Considering today I managed about 4 regular person bites of food, this is going to be hard.

This is one thing I had never really thought would be a problem. For some reason, the transplant manual doesn't honestly say "every single muscle in your body will shrink and need to be rebuilt, even the ones you will have never considered before."

Just to end on a high note, one last reminder to myself that I finally had a delicious smoothie today!!!  today!!


Pics from hospital!

I think it's time for some pictures from the hospital, the time line is backward because my phone won't let me rearrange them.

My card window/view in Step-down. I will soon need to find a new spot to hang them all.
Very creepy Santa that is also part of my view. I wish someone will knock him over for his ultimate demise.
My new toy! I'm supposed to strengthen my lungs by keeping the ball in the air. So far, not much success 

Magical magical ice

My view from my room from my old room in ICU

First sunset in weeks!

My daily " off the ventilator" progress chart from ICU.

Having fun hanging out in the make shift ward in PACU rolling up yarn for my knitting. They did a better job than the Amy and David disaster 

Mom opening up birthday gifts!

Sunday, 21 December 2014

Unexpectedly eventful weekend!

Stepppp dowwwwnnnnnn!!! I made it! Hurray! And on a weekend too. I was pretty much all set for a quiet weekend when I've had so many changes. I was pooped, although only figuratively for the first time since transplant (heehee poop jokes...but seriously, so much pooping. That part was never mentioned in the transplant manual!) by the time last night rolled around.

Yesterday evening/ last night, as what I can only guess was a hail mary effort on the part of my Drs to get rid of the liquid in my lungs, they decided to up the dosage of my "pee like a racehorse" medication. It worked! The xray today showed that the fluid was draining well so they decided to not put in the 'piggy tail' chest tube (which I've since learnt is called such because it curls around inside of you). No complaints on my end about lack of chest tubes.

The actual big news of today is that I can talk again!!!! Well, not so much talk, whisper slightly, while squeaking loudly every so often. My poor vocal cords are in shock with suddenly being in demand again. Before you get too excited, yes, I still have the trach. How it works, as I'm learning, is that now that I have the smaller size trach, they basically put a plastic shield over the hole in the trach and then I breathe like normal. The entire process is called "corking" and I need to be corked for 48 hrs to get down to the 7th floor.

I am still on oxygen while I was (and still am currently!) being corked. The RT tried taking me off the oxygen completely and my stats stayed levelled but I started panicking. My brain is not ready to admit that my lungs can handle room air. Stupid brain panicking about things. Silly brain, our lungs work now.

Lastly, Happy Solstice Everyone! I hope you enjoy the sun returning back into your day.

Saturday, 20 December 2014

Goodbye ICU!

Hello all again!

Alley asked me to write a quick blog update for her as she is quite tired today. She made it to step down today! She is still off the ventilator and just on oxygen. The doctors put in a smaller trach today as well, so she is able to have ice chips. She said the ice chips are amazing.

The doctors also may still put in a small chest tube tomorrow, or do a bronc and try to get the fluid out of the one lung. They are still debating on what to do. They are giving her lots of lasix to try to make her body pee the fluid out, and hoping that it will work instead. We will wait and see! The lasix really dries out her mouth, thank goodness she can have ice chips now!

That's all the updates for now!

Hurray for out of ICU!!!!!


Friday, 19 December 2014

I trach masked 24 hrs!!

I made my 24 hrs off the vent machine breathing by myself (with oxygen). Hurray!!!!!!!! This is a huge step. I, and piles of Ativan, made it through the night! I did need one super suctioning which one of the drs was not a huge fan of but I didn't panic and stayed off the machine. The machine is  now officially out of my room! I may be out of ICU by Christmas after all!!

Another plus, the sun has come out for a moment on me now that I have a room with windows and the nurse has given me a cup of orange juice to swab in my mouth. This is a milestone to enjoy.

Crazy two days! Part 2

Yesterday was much less crazy once things were settled. I'll be honest though, I woke up so mad at my body for not having made it. My oxygen stats were absolutely fine at the first, I just happened to be the one who panicked for some random reason. Why couldn't triggers be something vague like spaceships or the yeti? Instead, my panic comes from sitting in bed with my trach mask on. Stupid past experiences that were less than enjoyable....

Just so you don't forget, at this point I'm still hanging out in random ward with the man and his large family who was not pleased in any way about him also hanging out in random ward. Despite this, as promised the day before, my nurse washed my hair. It was simply magical. I think I may collapse into a heap of excitement when I can actually shower.

During the hairwashing, my nurse got the call that we were moving back up to ICU! Back I was transferred into the bed, everything piled around me, and off we were whisked back up to ICU.
Unlike last time where I was able to watch the entire thing with amusement, I had an anxiety attack again about being back in bed. Thankfully my nurse had one dose of Ativan ready for me and talked me through most of it.

All the nurses keep reminding me, it's normal to have panic attacks as mostly everyone else does being in ICU. I know that it's normal, but it does not make it less scary when it happens. Thankfully, because I was being transferred upstairs, someone else was being brought down, so one of the nurses brought the second half of my dose. The rest of the dose plus some time seemed to bring me back to myself.

 My room is not the same as last time. I have a roommate which is unfortunate but I have a fantastic view. For the first time in three weeks I can finally watch the clouds go by.

The rest of the day was much more restful,  with visits from family,  and games. No more pooping blood and the big news...I got my catheter out! Hurray for peeing on my own! Now I just need to remember that I am peeing on my own and not push whenever the urge occurs. My nurse would not be pleased.

Thursday, 18 December 2014

Crazy two days! Part 1.

My whole new day attitude worked fairly well. I had a fantastic walk with only the physio walking with me. The respirologist has decided that I'm not necessary to walk with, yay! I did about the same distance as the day before only with less oxygen. Double yay! The only thing that hurt at the end were my scrawny little calves.

The morning went smoothly, the results from the CT scan returned and it did show some fluid pooling in two spots in my lower lobes. The doctors couldn't decide whether or not to put in chest tubes called "piggy tails" (I assume because they are so tiny...?) And as of this morning, still haven't decided anything. I had been off the ventilator (the machine that helps breathe) and on the trach mask (breathing on own but with oxygen help) since 630 and was determined to go for 24 hrs since that's all I need to get out of here. I'm sure I've mentioned this once or twice...it's all I can think about.

The afternoon was pure chaos. Absolute pandemonium. Nothing to do with my end, I was able to sit and watch the drama. One minute after my nurse went on break, the charge nurse burst into my room and announced that I was to be moved "temporarily" to a new floor. Right this second!!

I sat in my chair and watched in amusement as everyone in the department run around madly without any oversight. The nurse who was covering the shift mentioned that since I was already sitting up, I should just go down in a wheelchair. That soon became "the patient wants to go down in a wheelchair," to which I kept trying to sign that I was really, honestly, ok with being transferred back to bed for the ride. The porters (sorry, "transport," as they're known here) brought up a wheelchair for me and had it ready to go.

Then my nurse sauntered in late from her break, complaining that the staff elevators were being crammed by people rushing down for the free hot chocolate being given out to staff on a bottom floor. She, already slightly high strung, did not react well that she was being shipped off to a new floor. It was another 30 min before anything happened.

I was, as I expected, transferred into my bed, and whisked off to the Acute Post Op Area (still not sure if that's where I was). Basically a giant ward where people hang out after surgery. I was probably there at one point.

As expected when people are suddenly whisked to new locations, there was nothing prepared for them. The nurses had to set up the medication system which never really worked and then had to figure out things like "how to use the thermometer" from the floor (just FYI, you swipe it across the forehead to the temple). It was not exactly a relaxing environment.

It didn't help that the poor man beside me kept trying to pull out his trach and all his lines, hurray for being most stable on the floor...? But come evening, the humour of being in a new place was over when 1) the respirologist (RT) was one from that floor instead of the ones that I'm use to and 2) I was starting to feel myself get super anxious around 11pm and the staff had to go back up to the ICU department to get my Ativan. Not only that, one of them decided he would go on break and "bring the meds down after." That's great when it's something routine but doesn't work when I feel as though I can't breathe.

It all went downhill after that. I couldn't bring myself down, I got myself more and more worked up that eventually the nurse had to call in the RT. Only much to their surprise, the day RT had only wheeled down the vent machine and hadn't actually hooked it up. They couldn't get it to work so the nurse had to bag me (like on all the tv shows when they use the squeezy thing to help someone breathe) for a solid 5 min while the RT tried to figure it out.

My oxygen stats spiked back up and I felt immediately better being bagged, so because I'm an idiot and refuse to say no, I agreed to try the trach mask again. I thought maybe since I had calmed down from the attack, I would do ok once I returned on it. Nope!!! Another round of panicking occurred and back on the bag I went while the RT figured out for real what was happening with the machine.

Thankfully and mercifully, almost 5 min back on the vent machine, I went to sleep and slept soundly until 630.

Tuesday, 16 December 2014

Forgetting about yesterday

Yesterday was a day that I'm going to pretend did not happen. Or as everyone else kept saying "tomorrow is a new day," thank goodness for that. Today is that new day.

This will be TMI but in the morning yesterday I basically pooped out a lake of blood. It was not a good start to the day. Especially for my nurse who had to deal with it all up immediately at the start of her shift (welcome to work, muhaha!). My hemoglobin levels were crazy low so my nurse rightfully panicked and summoned the Drs.

Despite this, I was determined to go for a walk until I sat up and felt dizzy enough that I thought I might pass out. The physiotherapist wisely decided it was not the day for me. The nurse and physio readjusted me back in bed and I basically slept the day away while being transfused 4 units of blood. No walk, no trach masking, just sleeping. If I hadn't been so sleepy due to the lack of blood, I would have been even more frustrated than I already was.

They did a GI scope around 6pm (which meant they stopped my food feeds) which showed a small bleed from my giant massive ulcer. The one upside is that there was a small clot so my body was trying to heal itself. Yay body! Sadly it clearly wasn't enough to stop all the bleeding so they added yet another clip (I don't know what these clips are made of or how they work), added more "please behave" spray to my stomach, and took a biopsy to see if I have a random "let's grow ulcers" bacteria living in my stomach.

After waking up from the scope, in the evening, I felt good enough last night to be trach masked for a little bit. But then my CO2 levels spiked while I was on it so they ended up switching me back within the hour.

Clearly my body was screaming at me to just take a day off.

Thanks to the magic of chemistry, I did have a fantastic sleep and had a early morning as I was woken up at 6am for a xray. I'm crazy hungry and since I changed rooms last night, the food people keep trying to deliver me food. I want to lunge at them and down the cartons of milk. Except then I would aspirate due to the trach and die so it's best if I don't. Now I'm waiting for physio to show up so I can finally go for a walk. I guess yesterday was just a stupid frustrating bump in the road to remind me that I can't control anything.

I think it's time for my walk!

Sunday, 14 December 2014

A much shorter ICU post

I just wanted to brag that I made it for a lap around the big block and one around the small one. Of course with the giant body walker but with no physical support. Things are improving well on the physio end. Woohoo! My calves were not happy at the end but they do not get a vote.

If only that was all I had to do. I've developed some anxiety with being in bed and on the trach mask the same time. Which is a big deal as it's pretty much the only thing still keeping me in ICU. I'm blaming the anxiety attacks on a few - less than pleasant experiences - I had while being switched from the vent (lung support) to a mask (only oxygen for support). I panic if the switch takes too long (or now when it happens) and then seem to not be able to get myself down to non-anxious levels.

Anxiety really is the worst because part of the brain serves as a constant reminder of how irrational the entire thing is.  Everyone standing around telling me my stats are fine which I know is suppose to be supportive. However, so far I've found Ativan to be the most supportive of all. Even though I hate every time I need to take it as I feel as though I should be stronger than the situation. I know the lecture of how much I've been through and it's ICU so it's ok to need extra meds (like my new fav sleeping pill!). It's still hard to admit to oneself that the brain needs extra help in dealing with situations. Sometimes all the breathing exercising in the world don't work.

Well, this celebratory post of my walk took a turn for the more depressing side. Since we're here already, the other new news is that there is still a lot of fluid in my lungs so they'll be sending me for a CT scan tomorrow to see if the liquid can be drained through Lasix (some magical pee-making machine pill) or if it'll be necessary to put in smaller chest tubes. Urgh. Common Lasix! Work your power!

Saturday, 13 December 2014

Hello from ICU!

Hello all! It's me!! I have a few quiet moments this morning so far so thought I would type slowly out on my phone. Amy has done a fantastic job keeping everyone updated as to what's been happening medically.

ICU is quite the place. I woke up after 5 days of being completely out. I know Amy and family says I gave hugs and whatnot earlier but I honestly remember zero of that. I woke up lucid for the first time at night very confused wondering if the surgery had happened and what was going on. Thankfully my night nurse explained it to me that I did have a surgery and then they had to go in a second time because of the bleeding in a lung but that things were good. I've never been so relieved in my life. Waking up alone and confused is not something I would recommend. I'm still coming to terms with the fact that I have new lungs. It's not something that sinks in over a few minutes.

Being in here, I've honestly never felt so helpless in my entire life. When I first woke up I needed help lifting my head or arm or leg. I felt tossed about like a rag doll when they repositioned me. I was and still am in mourning for all my muscle mass. It seems I have to learn how to redo everything.

I understand now why I worked so hard at physio, at least the muscles were there at one point and are waiting to be recalled. I can't imagine if they weren't there at all. I had childlike excitement the first time I was able to roll from side to side on the bed by myself  (a few days ago) and again last night when I managed to stand up from the chair on my own (this was with strong encouragement from the nurse). I still can't honestly believe how hard it was.

Every day I get a little physically stronger and can walk a bit more with physio. Yes, I've had the  setbacks like my GI bleeds and blood clots. Of course it's not going as fast as I would like but that's because I would like to run out of here right now. Only my body doesn't seem to be agreeing with me.

I will admit that I was in complete denial of how sick I actually was pre-transplant (as Amy says, they don't use the BiPap machine for fun), and then being split open twice, given new lungs, and then having all my blood plasma switched out with the crazy Ecmo machine, it's no wonder my body is slightly protesting for a rest. So much for the transplant book's encouraging words of "many people don't even remember ICU," my transplant book will say "I lived in ICU for weeks!"

Right now the thing that is mostly keeping me in ICU is my trach. I have developed a bit of anxiety around the switch over which is super annoying. They've given me something to help which worked today so hopefully will cut this off before it gets worse. The doctors are super on top of everything. As I'm sure you read, I did 10 hrs off the vent yesterday and then today they want longer and then soon they'll want 24/7.

That's basically all from ICU and all I can type on my phone. The GI dr won the battle over continuing the blood thinner drip so that has been stopped and replaced with a twice daily needle to the stomach or thigh. I would be on the side of the lung drs except that I've stopped pooping blood, so yay to that! Even if it does involved more needles.

Thank you all for your support and messages and thoughts. It's been easier knowing there is a cheering squad behind me.

Thursday, 11 December 2014

Home soon for me (Amy)!

Greetings all,

This is going to be the last blog for a few days as my Dad and I are heading home on Saturday- Sunday. Mom is going to stay up for another week or so. There was no major changes today with Alley, which is always good. The  GI doctor and the transplant doctor are trying to decided if they should leave her on the blood thinner. The GI doctor wants her taken off it as he feels she may still be bleeding a little bit but the transplant doctor wants her left on it to try to get rid of the blood clots. So, when we left tonight, she was still on it for now, but they are watching her closely.

She also walked around the little block ( with help, of course) and didn't feel dizzy. She sat up in the chair and was off the ventilator, just with oxygen, for most of the day.

Our intense game of Wizard!

More Christmas decorating at the appt!

A yummy latte at a random cafe a few days ago!

Wednesday, 10 December 2014

Random Pics during the last few weeks

Hello everyone,

There has not been much new with Alley today. The doctors decided to restart her blood thinner last night, and they started her feedings back up again as well. She made it today for a walk around the little block of the ICU without feeling dizzy, which is great progress. She was also off the ventilator for 10 hours today and did very well.

I decided to post some random pics that we took during these couple of weeks. Keep in mind, we were not allowed to take pictures of Alley in the ICU until she was awake and able to give us permission, so there are no immediate post-surgery pictures.



Our celebration "surgery is a go" drink on the plane. Also, to celebrate that we survived the first flight as the turbulence was crazy

First puzzle in the waiting room complete! Minus 40 some pieces that are in a vacuum cleaner somewhere

Christmas display at the Hudson Bay

David's birthday cheesecake

Birthday pomegranate cheesecake with a bite out...yummy...
Second puzzle competed! Only one piece missing this time

First hair wash after surgery!!

Decorating Alley and Isaish's appt for Christmas

Iv pole full of meds and another blood transfusion.Thanks, blood donors!!

The magical Popsicle that tasted like Christmas. Too bad it was banana

Card making in ICU!


Tuesday, 9 December 2014

European Christmas market in Toronto!

We ditched Alley one day that she was sleeping and went to the European Christmas market! Here are some pictures of it:

Dad Photobombing our selfie!

Tree!

Christmas carollers
Yummy mocha drinks at the chocolate factory
Dad had rhubarb pop. It tasted like a tree

David and Cindy shopping

Pretty shops!

Family Pottery Post! ( where Mom, David and Cindy went to drop in pottery class and picked up Alley's creations at the same time)

Alley's Snowmen!!
 
Mom's flowers she painted

Cindy's creation!

Mom's flower earring holder

David's mug

Cindy's bowl

David's creation

Alley's vase she painted

Blood: It's in you to give!

Greetings all,

The last few days have been pretty good for Alley as far as her breathing goes. Yesterday, she was able to be off her ventilator for 6 hours and today she went 7 hours. They also may try her off again tonight for a little bit, they will see how tired she is.

She was also able to go for a walk today and made it 25 meters. The physiotherapist said that she was able to control her breathing better and Alley said it was the first time she didn't feel like passing out. Hurray!

Over the past few days, they discovered that she has 3 bleeding ulcers in her intestines. She was losing blood and her hemoglobin was dropping, so they decided to scope her stomach  and intestines and that is what they found. Because of the bleeding, she needed to get 3 blood transfusions. They were able to kind of clamp them off and than decided to redo it today. So today, they did the scope again and were able to totally clamp off the " super ulcer" as the doctor called it, and made sure there were no more. The doctor said that the ulcers could have been a result of either her blood thinner that she is on because of her blood clot ( so this was stopped yesterday), stress on her body due to surgery, the antibiotics that she is on, or a number of things combined. Alley is hoping that now that the scopes are hopefully done, she is able to have some food as she is getting hungry.

The doctors also took out her last 2 chest tubes today. Hurray for 2 more lines gone!

 

Sunday, 7 December 2014

Yummy popsicle!!

Greetings Alley blog followers!

Yesterday, Alley had a tired out day. She started some heavy duty antirejection meds Friday night so they made her pretty shaky and tired. She was able to get up in the chair for a couple hours and than sent us all away so she could have a nap.

Today, she had more energy and felt better. She was able to go for a walk for about 25 meters ( with lots of help, of course) and the physiotherpist told her it was her best walk yet because she was breathing better. She told us today ( via pencil and paper, as she can't talk with her trach) that she could feel the bottom of her lungs for the first time. It was pretty exciting. She was also up in the chair for 5 hours today. The other exciting thing was that she was able to come off the ventolator for 3.5 hours today, just with an oxygen mask to give her oxygen. She did really well with this today.

The doctor also allowed her to have a popsicle today! Unfortunaly, it was banana, her least favorite ever, but she said that it never tasted so good.




Friday, 5 December 2014

Christmas card making in ICU

Hello,

Not much new happened today for big changes, which is kind of a nice change. Alley went for a walk today (obviously with tons of help like the last few days), and did very well. She didn't go as far today but had less support with breathing while she was walking so they are all pleased. She than was able to sit up in a chair for 4 hours. She has gotten us to bring in all her Christmas card making supplies and we have started to help her with those. She will probably be the only one out of the Watson clan that will actually send out cards. We were helping her cut things as her hands are still shaky but she is able to write and glue things.

Medically, the new things today are that they started her on the blood thinners for her clots. They also weaned her ventilator down for an hour. They also started her on the super powerful anti-rejection meds. This is a scheduled thing that they do to help wipe out her immune system to help her not reject her new lungs. So, this is for 3 days and than possibly once more next week. They warned her that this may make her feel like she has the flu for 3 days so they give her gravol and Advil. 

We nicely ditched Alley behind and celebrated David's birthday with sushi and pomegranate cheesecake. Sorry Alley!! Don't read this.... as she still can't have ice chips.....

Thursday, 4 December 2014

Clots, Walks and Puzzles

Hello Alley blog followers!

Nothing stays even keel in ICU land. The last few days have brought good moments and challenges.

The doctors were not happy with the slow progress Alley is making trying to come off the ventilator so decided to investigate this further as to why. They did a CT scan of her lungs and ultrasounds of her arms, legs and stomach. And surprise!! She has a blood clot in her lung, as well as one in the artery by her left shoulder. The doctors are not sure if the blood clot in her lung is from the donor's lungs, or bleeding from surgery or after surgery, but either way, this is why she is not able to tolerate being off the ventilator. The one by her left shoulder may have been there from an old picc line or just developed.

They did try to turn down her ventilator support early this morning, and it did not go well. Because of this and her blood clot in her lung, they decided to do a tracheotomy today. This will be more comfortable for her than a tube in her mouth. It also allows her to eat ice chips and hopefully a bit of food once it all heals. They are also able to wean her ventilator support a bit easier as she can come on and off of it eventually. She still is not able to talk with it, but eventually once she can come off the ventilator for a little while at a time, she can plug it and talk during that time.
The doctors did this procedure today, they can did it right in her room, and it went well. By the time we left, Alley was awake and able to write things down on paper.

The doctors will decide over the next few days when they are starting blood thinners for treating the blood clot, as they want to let her trach heal, as well as give her lungs some time to heal from the surgery.

Alley also was able to get up yesterday and today for a walk! She made it about 15 meters yesterday and triple that distance today! She obviously is very weak and walks with lots of help as she has chest tubes and iv lines and someone to give her breaths with a bag when she walks, but she is doing great with it.

We are also happy to report that we finished our 2000 piece puzzle in the waiting room. We have now begun a new one. (There may be a pic to follow once Alley is back blogging as I do not know how)

Tuesday, 2 December 2014

Small steps

Hello all,

As we expected, progress is slow in the ICU lung transplant world. Today was one of those 1 step forward, 2 steps back days. Alley was on minimal breathing support through her breathing tube so they decided to try taking it out and put her on some nasal prongs with a high pressure to make it easier for her to breath with oxygen. This was a failure. She lasted 2 hours, and was increasingly getting tired and struggling to breath. Her body was getting exhausted with this and her heart rate climbed to 170-190 and she needed more oxygen. They gave her a few meds to try to decrease her heart rate and than put her breathing tube back in.

This showed that her body was not ready to have the breathing tube out, which can sometimes happens. They put her back asleep and were leaving her for the night before they will make any changes.

They will not try to turn down the ventilator for a few days and my guess is that she will be very sleepy and exhausted tomorrow.

Although she has progressed well in the days since her transplant, any amount of movement ( such as sitting up for a few minutes or trying to communicate with us) makes her very tired and she has to sleep for a few hours to recover.

Thank you for all your words, thoughts and prayers over this last week.

Sunday, 30 November 2014

" What's the latest with Jian??!!"

Hello all!

Alley had a great day today. She is slowly waking up more. She is able to play charades with us, even though we are not great in guessing what she wants. Thankfully, the nurse gave her a letter board for her to spell out words. One of the first questions she asked me is what's the latest with Jian Ghomeshi! The staff found it quite amusing. 
Cindy, David and mom went to a drop in pottery class and brought pieces that she had painted and made back to show her as they were due to be picked up. She seemed quite happy with them. 

Obviously, this made her very tired so we left early to let her rest. She still has her pain meds which makes her sleepy. They took out a few more iv lines, which is nice. They are talking about taking out her breathing tube within the next few days. 

Cheers!

Amy



Saturday, 29 November 2014

Pasteries and progress

Hello Alley followers,

Alley is doing really well with her new lungs! She was taken off the ecmo last night, hurray! She had to be taken back down to surgery last night as one of her lungs was bleeding. They drained all the blood and fixed the problem. The docter said that this is common, especially where her orginal lungs were so bad and would be hard to take out because of the scar tissue. Also, they had to thin her blood because of the ecmo. It doesnt seem to be bleeding today so that is an improvement.

She is still on the ventilator but is doing all her own breathing, just with some pressure support. She is opening her eyes today when you talk to her and they are slowly turning down her pain medication to wake her up slowly. 

They are also starting to give her some food through a tube to see how she does with it. 


We have found a european bakery nearby so we all happy and I have gotten cindy addicted to lululemon. All in all, a great day. 

Friday, 28 November 2014

Beginnings and endings

While we rejoice today over seeing Alley begin to breathe with her new lungs, we are overcome with a depth of sadness and thankfulness for the family who so generously donated their loved ones lungs. Their family may be having a funeral today-----it could have been us.
This is the paradox of a double lung transplant.  The mixed emotions are forefront in our minds and I don't think its all because we are exhausted.

The donor's family would have had to endure their loved one kept on life support longer than if they didn't donate.  That is not an easy process.  BUT we hope that the knowledge of the precious gift they have given ----new life for another ---- will comfort them in this time of loss.

If everyone who is praying and thinking of Alley would talk about organ donation, maybe recipients wouldn't have to wait 13 months to receive their needed organ. Maybe more lives would be saved, less complications would arise, less rejections would happen.

We would like to thank the donor's family for this selfless gift of life and also ask that you hold them in your thoughts and prayers today.

Thursday, 27 November 2014

When a hand squeeze had us all in tears!

Hello all,

Today was quite a day for Alley. They allowed her to semi- wake up for a little bit today!! She was able to squeeze our hands, nod her head, and I even got a hug!! It was very emotional for all of us, very very thankful. The nurses than put her back to sleep to let her body rest.

They are also weaning down the echo machine ( the machine that is filtering her blood like her lungs) and making her new lungs do some work. Her new lungs are doing quite well with this and they are slowly adjusting her ventilator as well.

The surgeon came today and said that she is doing much better than he expected. Hurray!!

She is still quite critical but doing well and stable.

Thank you again for everyones support at this time. It means so much to all of us.

Love Amy

Wednesday, 26 November 2014

Out of Surgery!!

Hello, this is Amy! Alley is out of surgery! It went quite well. She needs an ecmo machine which helps filter the o2 in her blood ( basically acts like lungs) so that means that her recovery will be a bit longer. She may need this for 1-2 days up to 2 weeks. So while she is on it, they will keep her sedated to allow her body to recover and accept the new lungs as her own! The recovery will be a bit longer than " textbook" as her body is trying to fight the new lungs so they will give her body a chance to heal. The surgeon said that this is common at times.  Alley was quite sick in the few days leading to the surgery so this is why they tried hard to make these lungs work for her, and why there was such a long delay before her surgery.


Myself, David and Cindy made it here tonight, and beat the snow storm.

Thank you to everyone for your thoughts, prayers and well wishes. It means so much to everyone to have your support.




She's in!!!


Here I go for a double lung transplant. 

It's official! I am on my way to getting a double lung transplant.

It can take 8-12 hours so don't expect any news right away. Once the transplant is over I will be in ICU for several days or week. Once I am coherent and can breath on my own, I will be transferred to the 'Multi-Organ Transplant Step Down Unit' also known as the 'Acute Care Unit'.

Once I graduate from that unit, I'll be transferred to the Multi Organ Transplant Unit where I will be in intensive physiotherapy, learn about my anti-rejection meds, and recover until I am ready to be discharged.

A long road ahead but it will hopefully all be worth it in the end.

Thank you for all the positive thoughts, prayers, well wishes, and love. This has all be so much easier because of all of you. <3

Edit: This blog was written ahead by Alley. They just took her to surgery now so I (Amy) will update whenever I hear any news. Myself, David and Cindy are flying in later today. Thank you to everyone for their prayers and love.


*I just thought I should note that the hospital doesn't allow flowers for transplant patients. Not that I expect everyone to lavish me with flowers but just in case you had the urge, maybe a donation to an organ donor charity like hopeair.org or Canadian Transplant Association or Cystic Fibrosis Foundation would be better. 

Tuesday, 25 November 2014

Still waiting

Hello all,

We are still waiting for the official word from the surgeon that the surgery is a go.

I will keep you posted when we know more!

Amy

Monday, 24 November 2014

The call!!!!!!!

I got the call!!!

Gahhhhhhh *losing my mind*!!

I can't tell you the fun story of what happened when I actually got the call as I'm writing this ahead of time in anticipation but I'm sure whatever it was, it will be exciting and I'll fill everyone in once I recover. Most likely the story will be that I was almost asleep when I got called and we leisurely called a cab to take us to the hospital. Or perhaps I will be stuck on a broken down subway car outside union station and the only way to get out will be to run down the tunnel like they do in adventure movies (except hopefully the subway car won't blow up behind us as we dramatically jump out of the way in slow motion). Either way, I'm sure it will happen a way that I could have never imagined. 

 Before you jump on a plane, there is always a possibility it may not happen so stay tuned.

Because I got the call that means that a person out there somewhere has died and a family and community has lost a loved one. Thank you person for allowing your death to mean a new start for so many other people. You are making a huge difference in someone elses life and there is not enough thanks in the world for me to give to you.
 

Edit note from Amy: Alley goes for prep tomorrow at 5 am. She is getting transferred to Toronto General at 5 am and than has a day of meds and testing, with the surgery sometime tomorrow evening. I will keep everyone posted with more news when we know!!

Sunday, 23 November 2014

A " not much is new" update

Hello Alley's followers!

I (Amy, her sister) am doing a quick update on her blog as per her request. Not much has changed but I will try to post updates if there is anything new.

Alley's INR levels ( clotting factors) have stabilized so that she is off the heparin and is taking an oral blood thinner for her blood clot in her lung.

She is still having temps on and off and the doctors are not sure why. They are rechecking her picc line for an infection and doing another ultrasound on it tomorrow as her arm is a bit swollen today to make sure that it is not infected or that she doesn't have another blood clot there. Her blood work shows that she has an infection or her body is fighting something.

The bipap machine is helping her breath easier when she is sleeping and when she is short of breath during the day. She does not have any appetite and at times quite nauseated so they are giving her lots of fluid in her iv. She does not have any energy right now and sleeping lots. She is getting checked on lots by the icu team as of now.

Our parents went up today for the week ( as of now) and I fly up next Sat for a week.

I think that is all the latest updates!


Friday, 21 November 2014

Update from Isaiah

Hey, she just thought I should update how things are going.
  • Good news, they found out that it is not the flu, however they do not know what it is.
  • They have started her on a BIPAP machine, when needed, to push extra air in when she breathes, making it easier to breath so that the lungs don't get as tired.
  • she has stopped the Heparin IV drip and will be taking oral blood thinners from now on.
  • The fevers still continue and no one seems to know why, the latest theory is that it is a reaction to the medication. 
  • She will be followed for the weekend by the ICU staff just to make sure everything is going ok, and because the respirology doctors are only one call this weekend.
  • She alos continues to be very tired and is sleeping more then usual.

Wednesday, 19 November 2014

A list of updates

Just an update on everything that has happened in the last 1 and a half days;
  • There are no extra blood clots in my arms and legs. Hurray!
  • The fever remains and has knocked me out completely, so much so that they have been pumping saline into me all morning.
  • They restarted the IV antibiotics. They thought that discontinuing it might have been the cause of my fever, it was clearly not. They continue to keep me on it just to give my lungs extra support.. 
  • I can no longer do chest percussion's to clear the mucus in my lungs as the physiotherapist is worried that it was dislodge the blood clot. He told me it would take at least 6 weeks to dissolve, so in the interim I have to do these annoying breathing techniques instead.
  • I'm on the Heparin IV drip 24/7, but they have been gradually slowing it down, which means my blood levels are getting close to where they are supposed to be.
  • The TGH physiotherapist was very adamant that I return to exercise even though I'm attached to an IV poll. Her determination that I exercise despite my shortness of breath stressed me out yesterday. Today, the physiotherapist here (St. Micheals) said not to worry about it for now.
  • And finally, they think I may have the flu. I have had some muscle aches and a sore throat, they did a test but the results have not come back yet, lets hope it is negative. The last two days kept getting better and better...
Thank you for all of your emails, messages, and texts, I may take a while to respond due to the fact that all I want to do right now is sleep.


* Dictated by Allison Watson as the IV in my hand and the copious amounts of medications make it hard and painful to type.

Tuesday, 18 November 2014

Well, they know why I'm short of breath.

Just a quick recap, on Thursday, I mentioned that the physiotherapist explained to me my shortness of breath was caused due to my infection in the upper lobes of my lungs. I was off oxygen at rest on Friday which felt awesome. On Sat, I walked to the St. Lawerence Market and my lungs had a bit of a panic. I'm sure it was the cold, wind, and unexpected exertion. My oxygen sats dropped, my heart rate spiked despite the fact that I was walking as slow as a turtle and taking a ton of breaks. I ended up being on oxygen at 1-2L at rest when I returned to the hospital for the rest of the day as my lungs never seemed to recover.

On Sunday, Mom and I went off to the drop-in pottery class but this time cabbed it to try and give my lungs a break. I barely walked at all and felt as though I was walking very snail-like but kept getting super short of breath. It was beyond frustrating. Afterward, the doctor said that her explanation of why I was still short of breath despite my high lung function was because I had serious inflammation. Her theory was that I had a build up of stale air in my lungs due to my not exhaling completely. She was thinking of starting me on a anti-inflammatory today.
 
The doctors switched rotation today so I have a new attending doctor for this week. I kind of assumed he would have his own theories as to why the shortness of breath continued. While the doctors all work together, they all seem to have their own way of treating and testing things.

So I wasn't super surprised when in the morning, I was whisked off for a ECG with no real explanation as to why. And then in the afternoon, I was whisked off again for a CT scan. It was the gross one where they injected me with the radioactive dye that makes me think I'm peeing for about 5 seconds. It's not a pleasent time and is as random as it sounds. 

The new doctor showed up around 5 to tell me the good and bad news. The good news is that they now know for sure why I'm short of breath. The bad news is that it's a blood clot.

Yup, that's right. I have a pulmonary embolism (aka blood clot in the lung). Gah!!!  

To try to answer all your questions:

1) No, they don't know where it came from/how it happened, the doctor has a few theories but no solid answers. They did a leg ultrasound this evening and will do an arm one tomorrow which should inform them more.

2) No, they can't do anything about the actual clot. All they can do is start blood thinners to prevent any new ones and hope the clot dissolves quickly (within a few weeks).

3) No, this will not affect my transplant listing. If anything, it will probably make me higher priority. They can reverse the effects of the blood thinners if I get the call.

4) They started me on blood thinners tonight. They gave me the 'loading dose' (a giant dose) and then will be running it slowly during the night. They'll be closely monitoring the levels with blood checks every 4 hours (I don't expect to get much sleep) and adjusting as necessary.

5) They've stopped the IV antibiotics as of now. However, since I had a fever today, hey may give me a few more doses. Although now that my temperature is declining, they might not. I'm still waiting for the resident on call to show up and make a decision. He was suppose to be here three hours ago...the nurses are not pleased.

6) Finally, yes, I'm kind of freaking out. This is way more serious/terrifying than an infection or inflammation. However, I've calmed down slightly now that they seem to have a solid action plan.

I'll keep updating as I know more. The information seems to be changing or updating rather frequently. Seeing as I found out 6 hours ago and am now on blood thinners, this has been a lot to absorb in one evening. 

Saturday, 15 November 2014

Mittens

I know when people think of hospital stays they assume I must be bored out of my mind. I'm actually okay. I have my computer with wifi, my knitting, books, a few of my art supplies, my phone, and games. It's almost just like being at home. Considering I spend days at home reading or knitting, it's honestly not that much different to do that in here. I mean the food isn't awesome and the bed could be more comfortable but overall, I'm not going stir crazy.

Also, it helps that Mom is visiting this weekend and we went out to the St. Lawrence Market today for crepes and tomorrow we're going to try to push through everyone watching the Christmas parade and go to the pottery drop-in (as the museum is on the so called "Route of HoHo-Happiness" *major eye roll*) .

Last visit when my friend was visiting, I started my first ever mitten. I've moved beyond dishcloths and scarves! I've since finished it and have started on the second one. It's not going very fast but as the nurses have started asking to see how much I finished on their day off, I better start working on it more. No more slacking with my napping, they have expectations I need to meet!

My thumbless mitten! I'm going to add the thumbs at the same time so I don't have to learn it twice.

Friday, 14 November 2014

Neverending hospital updates.

It looks as though they're sticking to their plan of 10-14 days of IV meds even though my lung function is super up. I'm okay with that actually. I never thought I would be at the point where I would be advocating to I stay in the hospital longer. (Does this mean I'm becoming a responsible adult?!) I think getting a full dose will put me in a better position upon being discharged so I hopefully I won't keep yo-yoing in and out of hospital.

In other news, I'm completely off oxygen now at rest. Or at least I have been today. Yay! I don't expect this will last once I am no longer on IVs but my nose gets a little break for now. I'm still on it for sleep or when I do anything involving any exertion. But I've been off it for most the day and my oxygen sats seem to be staying above 90%.

The strange thing is that now it feels a little weird to not be wearing it. When I've always imagined the post-transplant experience, I thought the first day without oxygen would feel absolutely freeing. I thought how nice it would be not to be tripping over the cord all the time or having it jammed in doorways. However today, it's like I have phantom tubing. I'm still checking it when I go to the bathroom or move around at all. My brain keeps feeling as though something is missing. It's amazing what the body can become accustomed to. I'm sure 3 more days of not wearing oxygen 24/7 and I'll start to feel weird when I have to return to wearing it all the time.

The question I'm sure everyone is asking, is why would they take me off the oxygen when I'm still feeling short of breath? Well, as I've found out this week, shortness of breath isn't always caused by a decreased oxygen saturation. It can be of course, but it isn't always the case.

The respirology therapist explained it to me better today. He said if someone has an infection in the lower lobes, it's harder for the blood to get oxygenated so the body desaturates. However, if the person's infection is more in the upper lobes (like me), than the blood can still gets oxygenated (as when you're standing, gravity draws it to the bottom of the lungs). The shortness of breath remains as the body is still struggling to get air into the upper lobes.

The reason I still need the the oxygen at night is because when laying down, the blood pools more in the upper lobes where it isn't oxygenated as well due to my infection/scarred areas. Also, I don't breath as deep at night so the oxygen helps compensated for that as well. I hope that makes a bit of sense....he explained it much more eloquently. I clearly should have been taking notes. 

Thursday, 13 November 2014

Hospital Update: Good News Everyone!

Some good news, my lung function is up! Hurray! In fact it's up to a fev1 of .82. That's a huge jump from a week ago. Clearly this new antibiotic is what I've been missing in my life. My bowels might disagree but I've started taking some pro-biotics which should make them happier. So far the medication hasn't destroyed my red blood cells so that's also a plus (I really have low standards on the 'good news' front). Yay for not becoming anemic!

The other good news is that my oxygen levels are back to their baseline. In fact, the respirology therapist took me for a walk around the hallways and said I should decrease my levels to 1L at rest and 3L for exertion. I'm doing a sleep study test tonight on 1L to see if that can be decreased too. They really like to keep me on the lowest possible oxygen setting here. Too much oxygen and carbon dioxide can building up in the blood streaming causing poisoning. I would really prefer not to have my oxygen kill me. (Wouldn't that be ironic though if it did? I really hope everyone would make highly inappropriate jokes about it at my funeral.)

For the less than awesome news, I'm still feeling short of breath when I do anything significant like shower or walk down the hall. I thought it would be due to low lung function but seeing as my lungs are quite happy on the IVs, I can't figure out why it's happening.

The respirology therapist explained that when the lungs shrink, sometimes people feel short of breath because that is all the lungs are physically able to do. A person can have great oxygen levels but because their lungs are so poor, they still are very winded.

That makes sense but doesn't explain why this started happening all of a sudden. Or why it's still happening when my lung function is higher. I should be doing cartwheels down the hall with a fev1 of .82 (or you know...at least able to shower without feeling like I might fall over). He did not have an explanation to give me.

I asked him if it was something I just needed to push through and live with from now on. He basically replied yes and told me that I have to keep exercising or else my body will become weaker, causing my lungs to struggle more, causing my body to become weaker...etc etc. He said not to push myself to the point where I feel sick but that I need to not stop myself from doing things because of it. And as I've been told a million times in the past 13 months, he repeated: "The stronger you are going into surgery, the better you'll do post-op."

So it looks like I need to just deal with it. I can do that. I think. 

With my lung function increasing, I expected them to be kicking me out of here today or tomorrow on oral antibiotics as they did my last two visits the moment my lung function increased. However, the doctor said today that they would like to give me a full dose of the antibiotics, which means at least 10-14 days. They mentioned possibly doing it at home with  home care coming in to hang them but I think by the time they got the funding worked out with NS, I would be ready to leave so I doubt  that will actually happen.