" 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

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. 

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.

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

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. 

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

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!!

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!

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.

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.

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. 

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.

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. 

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.

To the respirology wing!

I've made it to the respirology floor! Hurray! Once I moved over to the respirology wing, it was a quiet day. I saw the resident who said they decided to increase my IV med to 3x a day. My poor GI tract.

That is basically all the exciting news I have to share. I had a friend visit and bring me a delicious veggie wrap for supper. I love not having to eat hospital food. Now that I have a fridge again, Isaiah can finally bring me stuff. Although I'm hesitant on getting him to bring lots of food too early as last time he did, I was discharged the next day.

I'll be getting my lung function test done tomorrow so stay tuned as to whether or not this shortness of breath is being caused by a low lung function or if it's some exciting new thing that is happening to me. 

In what seems to be my monthly hospital admittances.

In what seems to be a revolving door of sickness and health, I'm back at St. Mikes admitted for IV therapy. My goal to stay out of the hospital for the month of Nov lasted 9 days.

At physio on Thurs and Fri, I felt more short of breath than usual but my oxygen levels were still okay despite being down slightly. I passed it off as the cold weather or something. Until on Sat I felt short of breath walking around the apartment and then got super nauseous. When I threw up my '13 month celebration' meal, I decided it was time to call the doctor.

The doctor on call Sat night informed me that the respirology beds were full so I had to be admitted through emerg. I went in Sunday morning and spent the day hanging out in emerg waiting for a bed to open up. It actually wasn't as bad as I had been anticipating. They immediately whisked me off to a stretcher on the ward so I didn't have to wait in the waiting room with random people coughing and sneezing everywhere. I spent the afternoon knitting and listening to podcasts while peering through my curtain at everyone trying to diagnose the other patients.

That entertained me until they gave me my first dose of a IV antibiotic to which I had a minor allergic reaction. It wasn't super serious but my head was super itchy and my face got super flushed. The doctor informed me that the medication often causes the body to release histamines initially. They stopped the med for an hour and gave me a dose of IV Benadryl. Of course the respirologist showed up 20 minutes after the Benadryl admitted. I was much less itchy and very much feeling the effects of the Benadryl. I spent the entire conversation trying not to pass out and I'm pretty sure I said nonsensical things as I couldn't focus on anything. My conversation was basically "yes, everything good, IV itchy, wow this stuff super strong, all blurry, I sleep now."

By the time I made it out of my drug-induced nap, they had a bed on the gastrology/post-op floor.
I'm hoping desperately to get transferred to respirology tomorrow as while everyone is nice, they are not use to having people with CF. They tried to give me enough blood thinners for a "200lb 80 year old man who would be unable to get out of bed" (That was the quote from the horrified resident who read my chart today). Thankfully I refused to let them give it to me even though the nurse gave me a lecture on how I'll get blood clots from laying in bed all day (I promised her I would not spend all day laying in bed).

Also, because it's a post-op floor, they are super intense about monitoring fluid intake and output. So much so, that a man woke me up at 6am to ask me how much I peed in the night. I was so confused what he was asking me. I responded with a "what? ummm none, I was sleeping." He kept repeating "but how much did you pee?" "Ummm nothing. I went to sleep and woke up with you yelling at me about pee." I was not pleased. The PSW kept coming in all day to ask me exactly how much I had drank and how much and how often I peed. They are quite obsessed with it. Sigh. The respirology floor has increased my expectations of hospital stays. I need to somehow convince someone from there to leave. 

But other than the urine obsession and blood thinners, the floor isn't that bad. I still get my CF menu and junk food and it's relatively quiet. The treatment plan is to continue the strong IV antibiotic (the itching did not continue with the subsequent doses) that should get rid of everything in my body. The CF doctor said today that they can't test my lung function tomorrow as it's considered a holiday for non-essential hospital staff (even though the rest of the province refuses), so they'll check it on Wed to see if I've had a sudden drop in lung function and to give them a better idea why I'm so short of breath when I do anything.

My lovely view!

Waiting Game:13 Months.

13 Months.

It's been a long month. My release from the hospital in September didn't last long and I was back in for 5 days in Oct. It doesn't look promising for me avoiding the place in Nov. My lungs aren't responding long-term to any of the meds they give me. By long term, I mean longer than two weeks.

The weather has also changed to be a little more grey and a lot more cold. I find it much harder to breath when a cold wind is blowing into my face. I really didn't want to do another winter in Toronto. It's so dry and cold and windy. I never want to leave the apartment already and it's only Nov. I guess the upside is that I may finally knit a pair of mittens.

I don't have much else to add, it's been a pretty bummer month healthwise. The one highlight of the month was having people visit. Nothing like seeing friends and family to make hospital stays and feeling unwell less dreadful.

I continue to remain in 'isolation' at physio. They put a barrier up between the treadmills so I basically have a corner I hang out in. However since it's right beside the water cooler, people cross it all the time to get a drink. It's so silly but I guess it's keeping the infection control people happy.

I woke up at 2 am last night in a panic because there was a constant beeping coming from somewhere. I was certain it was my pager going off even though my pager has a little ring tone and not a solid beep beep beep. The brain gets confused when it's being woken up at 2am. I finally realized it was two angry cars outside having a honking contest. Argh! It seems my brain is always on 'wait for call' mode. One of the many upsides of getting the transplant will be that I can finally sleep without fear that I'm going to miss my phone or the pager ringing.

My goal the next month is to stay out of the hospital. Or at least try to avoid getting the flu since I am too immunocompromised to get the flu shot. I will Purell everything!

Pottery: Isaiah don't look!

I have so much pottery to share! Well, it seems like a lot considering I'm just going to drop in classes. I've actually been going which is great. I thought I might run out of things to make but that never seems to be a problem. 

I re-glazed the teapot after finding it pretty streak with just two coats. And it was out of the kiln last night when I went to drop-in class! Yay! And it pours! Double Yay!! It's not perfect in any way (very much has the 'travelling through space' look) but I'm still very proud of it. I had glazed the dalek mug with camel and copper and it turned out pretty cool as well. It's going to be hard to wait until Christmas before I give it to Isaiah. I want to start using them both right now.

Last night, I also glazed the bowl for my friend with old copper and dragonfly, I hope the combination is a beautiful as I'm imagining it will be. Some of the pieces end up being a giant surprise.

A surprise like this pitcher that I 'rescued' from the give away box. It was in the give away box and was too lovely to pass up. I don't understand how people make these perfect pieces and then never return for them. I figured it was definitely worth the 5$ it cost to glaze and re-fire it. I glazed it with gator and teal and it turned out quite unexpectedly weird. Apparently the gator separates into sections (like scales I guess? Must be why it's called gator). I didn't notice it as much when I used it previously but I had used it on a textured plate so perhaps that was the difference. I have no idea why these things happen. It's so weird but I kind of love it.

I spent the rest of my time (which flies by even faster in the 2 hr drop-in classes) making little snowman ornaments. I picked up a cookie cutter at Value Village and thought they would make fun ornaments. I wanted to make ornaments but needed something that would work even with the back not being glazed (as you need one side not glazed). I thought snowmen was my best option although last night I thought snowflakes would be good too if I can figure out how to make one without it falling apart.

One of the snowmen lost his hat.

Finally, I also got back the dog mug I made for my brother-in-law for Christmas. Amy sent me a photo of their German Pointer's paw, I traced the shape onto tracing paper which I then used to cut out the three paw prints from the clay. I glazed it with old copper and camel which has become one of my favourite glazing combinations.
 

The neverending doctor appointments at St. Mikes.

This week is a week of doctor appointments. Or rather, two dr appointments. That is enough for me. Yesterday I had my transplant clinic which is the biggest waste of time for everybody. They basically have me tell them everything I've been doing at St. Mikes, ask me how far I can walk before getting short of breath, and send me on my way. It's usually all nurse practitioners so it never takes very long but it's still annoying to have to go just to tell them everything they could read on the computer. It would be different if I didn't have another hospital following me very closely. Now that I'm status 2, I will have those appointments monthly. Urg.

My useful doctor appointment was today. My lung function was down to a Fev1 of .70 , I don't know what percent that would be but my guess is 20% (I think .67 was 19% for me, so around the 19-21% area). It means that the spike was definitly from the medication and that my lungs aren't able to maintain the increase once the medication is gone.

The good thing, if you want to call it that, is that there was a recongized bug on the sputum culture so the doctor was able to prescribe a new oral antibiotic that targets the specific bug. It's one that I grew over two years ago and was hoping had gone forever but it has apparently returned to live another day.

They sent me home on the new oral antibiotic to take along with the one I was discharged home from the hospital on. I tried arguing that the latter one is doing nothing as my lungs decline while I'm on it so I should stop taking it but they kept me on it with arguments like 'research shows it's better to double the antibiotics to prevent superbugs.' Even though at this point, I'm probably one giant superbug seeing as I've overused antibiotics my entire life. Although I suppose it's probably best to avoid trying to create more.

My PICC line is still in, they said next week if I'm not admitted then they might consider pulling it. They were not very hopeful that I'll be off IV meds for very long. It's been flushing well ever since my trip to emerg. Maybe I'm just more forceful now in applying pressure or something because it's been flushing smoothly. It probably also helps that I'm diligent in flushing it every day whereas before I would leave it to every other day. One trip to the emergency department is enough for me, I have learned my lesson.

Knitting a scarf!

Since my friend Cheryl's visit, I've been back to knitting. She taught me a few things about making mittens and working with the circular needles which made me excited to start knitting again. It also helped that since I was too nauseous to look at a computer screen or focus on a book, I could knit away while listening to mindless history podcasts.

So I made an infinity scarf! I'm very proud on how it turned out. It's my first ever 'bigger than a dishcloth' piece. I somehow managed to twist it with the circular needles but that doesn't matter so much with a scarf. Amy said I should tell everyone I did it intentionally. It's the latest thing in the scarf world!

I dampened the wool in an attempt to stretch it out slightly as it kept rolling into a tube.

Modelling my newest winter scarf! Bring on the cold weather!

Happy November!

It's November! I hope everyone had a fun and safe Halloween! The winter winds have started blowing much to my dismay. Despite the cold wind, I had a fantastic weekend with David visiting. We mostly spent the weekend playing board games but did make it outside for Halloween and a hockey game.

Health-wise, I've managed to wean myself off the anti-nauseatesover the last two days which is a step up. I would say my energy is coming back but I've managed to offset that gain by staying up way too late the last few nights. I'm sure it will return over the next week.

We went to the Friday Night Live party at the ROM for Halloween. It was the last day of our ROM membership so we wanted to go for a last hurrah. It was super packed, apparently if you wanted to dress up as an adult on Halloween, that was the place to be.

We were in the minority of people not in costume which I was not expecting at all. The FNL night is usually pretty fun but I found Friday night was even more fun than usual. There was just more of a casual relaxed vibe everywhere. Even on the subway, everyone seemed more social. It seems people are more friendly when they're dressed in a funny costume. It's hard to be aloof when you're wearing a Mario hat.

People were definitely questioning if my oxygen was a prop or not. I'm not sure that 'person with cancer' is really a popular costume choice. Although two guys on the subway in Ebola cleaning costumes seemed to think it was a brilliant idea. I would not trust their judgement of 'good taste in Halloween costumes'.

In fact, a ROM security person on the second floor actually made me dig out the tank from my cart to prove to him it was real. Amused, I tweeted about it (because yes, that is something I do now), and some staff person must have read it as when we left, a second security person apologized to me. I wasn't offended, the guy was just doing his job trying to keep bags out of the museum.

All in all, it was one of the best Halloweens I've had in awhile.

Here are some pics from the last few days:

Face painting at the ROM!

We blended into the crowd more with our fun facepaint. Isaiah refused to join the facepainting fun. 

We ate some chocolate covered crickets. It tasted like chocolate.

We made it to our first Marlies game on Sat!