Thursday, 31 July 2014

Halfway through pottery class

Well, I'm halfway through my second pottery session and I still love it so much. In fact, I've started having pottery nightmares where I'm in class and I can't find any of my stuff or time has run out and I haven't made anything. I then wake up all stressed out. I guess it's better than dreaming about the transplant. I've been really bad about taking pictures of what I've made so just picture a bunch of slightly lopsided bowls and mugs in your mind. That's pretty much all I've done so far as I've spent three classes on the wheel and one madly trying to paint everything I've made.

I've had a mug and a bowl that I made on the wheel crack on me which is super frustrating. The bowl I wasn't too concerned about but the mug I had spent a lot of time on. I had added a base, texture, and a handle and then it ended up cracking. Argh. I was told it is either because I used too much water or because I didn't push the clay down enough on the bottom. I painted it anyway hoping that the glaze will seal it off. If not, I guess it will be a mug to hold my keys.

Only 4 classes left! I'm planning on hand-building for at least the next two classes as I have a few ideas from fun serving plates and vases that I want to try. I got some ideas from etsy which may be a huge mistake as I'm sure they're harder to make than they look.

Monday, 28 July 2014

Lettuce update

I thought I would show an update of our crazy lettuce. I picked almost all of it before we went to the cottage and it filled our lettuce needs for a few days. When we returned, it was pretty wilted but it seems to have bounced back albeit the experience has turned it slightly bitter.

It also has unexpectedly grown into large stalks. Is this normal for romaine lettuce? I've only grown mixed leaf lettuce before so I have no idea if this is usual. The one time I had lettuce grow into a stalk was when it went to seed after I left it untouched in the garden for months. Hopefully it can avoid going to seed for at least another few weeks. 

Don't turn bitter too

Saturday, 26 July 2014

Infection Control and CF

Cystic Fibrosis Canada along with the the Cystic Fibrosis Foundation (USA) recently brought out a new infection prevention and control policy. While I don't know what the old policy entailed, here are a few excerpts from the new policy:
  • People with CF may attend Cystic Fibrosis Canada hosted or sponsored outdoor events but are advised to maintain a distance of at least six feet from other individuals with CF at all times. 
  • The organizer(s) of Cystic Fibrosis Canada hosted or sponsored outdoor events may assist with voluntary self-disclosure through the provision of items such as clothing apparel, stickers or wristbands.
  • Avoid activities associated with events that encourage crowding.
  • Always be aware that there may be other people with CF present at the event, including those with B. cepacia, epidemic Pseudomonas, MRSA and other potentially harmful infections.
  • Be aware that young children with cystic fibrosis are usually less vigilant about observing proper infection prevention control practices.
  • Only one person with CF may be invited to attend a Cystic Fibrosis Canada hosted or sponsored indoor event or meeting. In the case where a person with CF has been selected or invited to attend a Cystic Fibrosis Canada hosted or sponsored indoor event or meeting, the organizer(s) shall make every reasonable effort to ensure no other persons with CF attend that indoor event or meeting.
Basically: Avoid each other at all cost and beware of the children!

While I understand that the infection control people are just doing their job, is it really necessary that only one person with CF can attend an indoor event? Even with outdoor events like the Great Strides Walk which seems like the perfect place to meet other people with CF, the 6ft rule means unless there is screaming involved, conversations between people with CF would be at a minimum.

I know that it is the job of the infection control people to reduce cross infection and the best way to do that is to isolate the cause of the infection, ie people. They are the ones who get yelled at if I go to a CF sponsered event and catch a weird germ. However, the policy and the constant need to live in fear seems incredibly isolating for people with CF.

How are you suppose to meet other people or families affected by CF if you aren't allowed to approach anyone or attend indoor events? I'm sure a lot of people break those guidelines with friends they already have but if you want to meet anyone new, the only real option available seems to be the Internet with its facebook, blogs, or CF websites.

However, while I'm sure those help some people find connections but personally, it's hard to find any that are actively used and those that are seem to be quickly taken over by people who want to promote their latest 'cure' or annoying people who post that their lung function is so high because of their positive attitude and everyone needs to be more positive (I wish I was kiddening...apparently I've been following the wrong treatment plan this whole time with my puffers and medication). 

Although to be honest, I've probably never given it a fair shot as growing up I've didn't have to look very far to find someone else with CF as Amy's bedroom was across the hall from mine. Having Amy around helped normalize the experience for me growing up as I wasn't the only one doing aerosol masks every day or taking pills every meal.

It helped growing up to be able to rant about a situation and have the other person know exactly what you mean. Sure, other people can sympathize but unless you have CF, it's hard to fully understand the frustrations of endless coughing fits, being exhausted from those coughing fits, struggling to breath deeply, having an obsure type of diabetes that no one understands, or having a million digestive problems.

Reading the new policy made me realize how without knowing it, having Amy to talk to has been invaluable in my life. I've never realized before how comforting it is to have a sister with CF until I thought what it would be like to not have anyone to call about a weird lung pain that is bothersome but enough to have to go to the hospital, or to rant about the gross-ness of Boost, or to ask how many pills she takes with a smoothie.

I think I would feel isolated if I didn't have Amy to text at all hours about all my problems as it would be hard to have these experiences and not be able to talk to anyone who 100% understands. The new guidelines, while trying to ensure that everyone leaves an event with only the same germs with which they arrived, will make it even harder for those with CF who want to make connections with other people with CF.

Friday, 25 July 2014


We had crepes the other night with fresh veggies and hollandaise sauce. It was delicious and in the morning we still had some batter and sauce leftover so I made a delicious breakfast crepe. Bacon, fried egg, and cheese. Yum!

Thursday, 24 July 2014


I thought you might enjoy this video that Isaiah took of a lightning storm from our balcony. Also, I told my family members that I would show them and this is the easiest way. The storm was a few weeks ago but I finally got around to putting it on youtube. Who needs fireworks when there are lightning storms to watch?

Wednesday, 23 July 2014

Amy's Birthday Vase

Since Amy finally got her birthday present last week, I can finally share it with you! No surprise to anyone, it was a vase I made in pottery class. I wanted to share it as it turned out pretty cool.

I used a stamp from the instructor for the texture, painted the first coat with a firetruck red undercoat, wiped some it off to enhance the texture, and used lemon yellow for the second coat. I then coated the entire inside with the clear glaze as recommended by the instructor.  It's done to make sure that I didn't miss any spots on the inside so that the vase will be watertight when filled.

Post-kiln! Pretty!

Tuesday, 22 July 2014

St. Mikes appointment

I had a doctor appointment today and while it wasn't all gold stars and high fives, it could have been worse.

My lung function awesomeness of 28% from 2 months ago has not maintained and has returned to my apparent baseline of 24 or 26% (in my disappointment, I didn't remember what the doctor said but it was either 24 or 26%). St. Mikes CF team seems to be more focused on the actual FEV1 number rather than the percentage so if you prefer that, I've dropped from an output in the first second from .9something liters to .8something liters which is still higher than pre-magical-puffer of .77 liters.

The drop wasn't enough for the doctor to want to do anything about it as I'm feeling fine energy-wise and my cough is about baseline (although it's so hard to tell). While it is disappointing, I'm not shocked by the news. I felt my 28% was too good to be true or to be maintained more than a month. While a part of me is hoping that my results were lower today because I was more tired or something, my realistic part thinks it's probably just my lungs getting off the initial steroid high and becoming more accustomed to the medication. It won't be long before I start asking for the better steroids.

In other news, I've lost a few pounds which I don't feel is a huge deal seeing as overall I've gained about 10lb since being here but dietitians always seems to panic whenever there is any decline. I promised to eat more chips and less veggies, even though it's super hard with all the fresh fruit now in season. I just want to eat bowls of fresh strawberries and raspberries. Probably why I lost the pounds in the first place. More whipped cream for me!

I asked about the results from my echo to see if I really do have a heart murmur but of course they had no idea and couldn't get ahold of anyone from the Toronto General to find out. The doctor reassured me that someone would be looking over the results but seeing as how every appointment the doctor reads my chart and looks up the tests for the first time while sitting in front of me, I have my doubts. Apparently someone will call if there was a problem or more likely, I'll find out during my next transplant clinic.

My last exciting piece of news (the excitement bar is set pretty low for dr apts) is that I met my new transplant coordinator. The old one who I saw on listing day to sign papers, handed me a binder, and have never seen again, turns out she has retired and I now have a new person to never see. Although maybe since this person is new and young, she'll be more excited about her job and check in once in awhile.

Monday, 21 July 2014


I'm back from the lake! We had a fantastic family vacation filled with kayaking and more kayaking. The weather was great except for the occasionally showers but it kept the humidity away so no complaints from me. I spent the time it rained reading teen books for mom for the school library. I can not say that I found the next Hunger Games books but a few of them were good with not too much teenage angst.

We arrived back in smoggy Toronto which welcomed our return with the Indie car races close to our building. It sounded like a swarm of angry bees were outside the door for the entire weekend.
The Toronto Indie races were happening when we were here last year for the pre-transplant testing. It doesn't feel like it's been a year since this entire transplant process got serious, apparently time flies when you're waiting for lungs. But at the same time, it feels like I've been stuck in this transplant world forever.

I may not have been going to physio last week but I wasn't slacking off.
As you can tell by my pool noodle, I was ready for some intense swimming (aka floating).

Friday, 11 July 2014

Be back in 10 days!

I'm off for a family cottage vacation! I got some compressed oxygen canisters from VitalAire, told the physiotherapists I'm playing hookey next week, and I've newly acquired some pool noodles all prepped for some lake-floating so I'm all set to go! Well, I will be after I finish packing and Isaiah takes everything to the car.

The lake is still within my time limit so I can rush back to the city if need-be. Unless that happens, I'll be back in 10 days!

Thursday, 10 July 2014

Pottery Class Take 2!

I started pottery class again last night! I decided it was worth taking a second class as I love it so much. It helps me be okay if I don't have the transplant in the next 8 weeks because I have pottery to make. I already stayed up too late last night thinking about what I should make for my remaining 7 classes.

Last night, I spent the entire three hours on the wheel and my shoulders are complaining today. I feel like I should have stretched beforehand or maybe I should have been lifting heavier weights to prepare. I was a bit more successful centering the clay (which I think explains the sore shoulders) so my bowls were a bit less lopsided. However, I still need to work on making the walls even as they tend to get too thin in the middle and then the entire side collapses. For some reason I don't think bowls with a thumb hole in the middle will make great gifts.

As I plan on making mostly Christmas gifts this time, I won't be giving weekly updates although it will be hard to resist sharing some pieces. I hope I don't ruin too many surprises. I may also not give updates because if it's anything like last night, the instructor whisked away all my pieces before I had a chance to take a picture.

I did get my leaf vase back after I re-glazed it and I'm so happy with the results. The colouring is perfect and works with the texture this time, it's even better than what I had planned. The only problem is that I don't think I'll be able to recreate the effect. It will truly be one of a kind. If only I had some flowers so I could put it to good use. 

I'm in love with the marbling effect.

Tuesday, 8 July 2014

Waiting Game: 9 months

9 months! Wow. I honestly didn't think I would be waiting this long. Although, since my whole 'why don't I have a transplant yettttt' pity party, I've reached some acceptance about my long wait. I figure that if anyone has to have a long wait, it might as well be me. I'm still enjoying Toronto and getting out to do things so if it's me versus someone who is hospitalized, I'm in a better place to have a long wait. Not that I have a real choice about my wait,  but my new philosophy is helping somewhat. 

So a quick update on the past month, there isn't too much but let's start as usual with physio.

- Physio remains the same, by this point I've seen people get listed, wait, have their transplant, and be discharged. Just a clarification from my last month update, the leg weights that I showed, are used just for leg lifts. I don't wear them while on the treadmill or anything (I was asked about that so I thought I should clarify. My legs are definitely not that strong).

My physio routine consists of: 20 minutes treadmill, 15 minutes stationary bike, stretches, arm and leg weights. I took a friend last month to physio and she said she pictured it being more gym-like. So I took a picture so everyone can get a sense of where I go three times a week. It's very much a large room with   exercise equipment. The picture below is just one side of the space although the other side looks pretty much the same. I just didn't think the people on the treadmills would enjoy having their picture taken.

Notice the two fans facing the left treadmill? That's from me being a fan-hog due to the exorbitant temperatures of the room.
- I may or may not have a heart murmur. Something came up on my last Echocardiogram that had never shown up before so the doctor didn't really believe the results. However, I'm having it re-tested this week to double check. It wouldn't surprise me if I have developed a murmur as my heart works incredibly hard to compensate for my crap lungs. My heart rate is always super high in general and it goes even higher while I'm exercising. If I do have a murmur, the doctor said it isn't anything to panic about, it's just something that the surgeon will need to be aware of during the transplant.

- We had a lot of visitors this past month which was really nice. I've posted pictures of most of our activities in past posts. I think we've managed to see all the big Toronto tourist attractions which is nice. We even managed to fit in a visit to my cousins for Canada Day where I learned that fireworks are only legal on holidays in Ontario.

The limitation on fireworks means that people really love setting them off on the few days they are allowed. It sounded like everyone in the subdivision was having their own firework show. I don't ever remember people in NB or NS ever being that excited about setting off their own fireworks. Or maybe I just hung out with the wrong people. The upside to all the noise was that their neighbour provided us with a very nice firework display without us having to leave the backyard.
How I spent most of Canada Day. Waiting for a transplant doesn't have to be all bad.

Monday, 7 July 2014

Book review: "The Etiquette of Illness" by Susan Halpern

I finally got around to reading The Etiquiette of Illness: What to say when you can't find the words by Susan Halpern. It's a book I've been meaning to read since last May ever since I read about it in the End of Your Life Book Club by Will Schwalbe.

It was okay but I honestly thought it was going to be better. I'm not really sure what I was expecting but Schwalbe described it as providing helpful tips for talking to his mother about cancer so I guess I was expecting more of a 'how to'-type advice book. Instead, it was really a collection of very short (a paragraph or two, sometimes a sentence) stories. The upside of that format was that it was incredibly easy to read in spite of the heavy subject matter. The downside was that I could only read a chapter or two before tiring of so many short stories. I'm not a lover of short stories so reading so many at one time was a bit much for me.

I also found it was quite cancer focused. Halpern was a counselor for people with serious illnesses and had cancer herself it makes sense but I feel like a better variety of stories could have been helpful. There was one chapter about chronic illness but again, that was from the point of view of someone who got cancer and now has to realize that they have a chronic illness.

Maybe it's because I've been in the hospital system for so long or because I'm the one who is ill but I found like all of the advice from the book could be boiled down into one thing: communicate with each other (but that would be a really short book). Communication is important for all when it comes to illness. Not just for friends/ family but also for the person with the illness. Keep an open communication and everyones' stress will be reduced. 

For example, no one is going to know if you want people around when your hospitalized if you don't tell anyone.  Or as the friend/family member, you don't know if the person wants a visit if you don't ask. Or if you're worried the person will die without having their fiances or will in order, tell them. Everyone will be a lot happier if there is communication on both sides.

Good communication will help overcome a lot of the fears about saying the wrong thing (I covered most of that in my tips for talking to people who are going through a rough time post). Honestly, if you don't know what to say to the person, just say 'I don't know what to say but I want to be here for you.'

One story that stuck with me was someone who didn't tell anyone, not one person, about their cancer. Their reasoning was that they didn't want anyone to worry. Since this is the complete opposite of my coping strategy of talking to everyone about all my concerns, I don't understand that desire at all. In the end, the person regretted their decision, not just because they found the process isolating, but because it also meant they had to celebrate their successes in silence. I guess after a certain point it would be even harder to announce to your family that "Surprise! Today is my 1 year remission date of the cancer I didn't tell you I had, must have slipped my mind while I was having surgery. Celebrate with me and don't ask any questions!"

Point of the story: talk to those in your support circle. Don't have a strong support circle? Find a good support group in person or online. Tell people about your fears and concerns and wishes. It's as important for both the person with the illness and as it is for the family/friends.

The only other tip that I thought was helpful from a family/friend side, is the importance of adding 'don't feel you need to respond' when sending sympathies or a 'thinking of you' message. As a friend/family, the desire to express that you're thinking of the person is valid and welcomed but it can also be incredibly overwhelming to the a person with the illness to feel as though they need to respond to all the messages. Most people who sent sympathies or well wishes cards or emails don't usually expect a response but telling the person that it's okay not to respond could help relieve some stress.

I guess the book might help some people who don't have much experience with illness or the medical system. Or for people who love reading about other peoples problems. Or for people who love short stories. Or if you have nothing else to read. If you are one of those people, this book is for you.

Sunday, 6 July 2014

Cellular Memory

I spent my evening doing Internet research on cellular memory after Amy texted me about a book she was reading that involved a woman receiving a heart transplant, only to start getting flashes of the donors life. Then it turned out the donor was murdered and now the woman has to solve the mystery before she herself becomes the target. Dun dun dun....oh the drama!

Amy texted to inform me that if I started getting flashes of a murder post-transplant and had to solve the crime, that I shouldn't go looking for the murder myself. Thank you for the concern big sister. It's all very dramatic and sounds perfect for a fiction novel, but I started looking online and there is actually a name for the phenomena (the recieving memory from an organ part, it doesn't have to involve murder).

It's called cellular memory and the theory is that memories are not just made in the brain but that they can be made in other organs. Therefore, when those organs are transplanted, the 'memory' of that organ gets transplanted to that person. That person can then undergoes a personality change or diet chance because of experiences 'remembered' from the initial organ.

While the medical community doesn't support any of the personal claims of individual, there are news articles about this apparent phenomena documenting cases of this effect. The problem is that after reading more than two news stories 'reporting cases', I realized they are all repeating variants of the same three stories:

1) A woman who received the heart from an 18-year-old male who died in a motorcycle accident, reported having a craving for beer and chicken nuggets after the surgery. The heart transplant recipient also began to have reoccurring dreams about a man named 'Tim L.' Upon searching the obituaries, the woman found out her donor's name was Tim and that he loved all of the food that she craved.

2) An eight-year-old girl received the heart of a murdered ten-year-old and began having terrifying dreams about a man murdering her donor. Until then, the murderer had not been caught, but recollections from the girl's dream were so precise that police were able to track down the killer and he was convicted. (This is the one that everyone loves to share and is exactly like the book Amy was reading. Perhaps the author read the same news article)

3) Sonny Graham received the heart of Terry Cottle who had shot himself in the head. After the transplant in 1995 Mr Graham met Mr Cottle's widow Cheryl, falling in love and marrying her (I find that weirdest thing, apparently donor confidentiality wasn't a thing in 1995). Twelve years later, Mr Graham shot himself, leaving Cheryl a widow for the second time grieving for husbands who had shared a heart.

However interesting those stories may be, I don't think that three unverified stories on the Internet means that a phenomena is real. Some reports says there have been '70 cases' of this cellular memory effect but when you match that up against the number of transplants happening every year, 70 examples is not very many. 

My Internet research did not come up with any scientific studies, it seems that any attempt to study the phenomenon (I found this on Wikipedia so not the best source) has been more about teaching worms or mice a trick and then feeding that animal to another worm or mouse and seeing if they can perform the same trick. They could not. It isn't quite the same as a organ transplant but it is interesting.

Personally, I side with the medical community ( had some actual information) and think most of the changes post-transplant can be attributed to stress of major surgery, side effects from medication, or sheer coincidence. Major surgery is stressful, as is the stress of imminent death so it shouldn't be surprising if peoples personalities change post-transplant.

I think that it's also normal for people to want to feel a connection to their donor and if the anti-rejection meds happen to make someone crave more sweets, I can understand how that could easily be attributed to developing a personality trait of the donor. However, it's just a side-effect of the prednisone. I doubt it would pass a double-blind randomized control study.

So while I think cellular memory is an interesting theory and a fun idea for a murder mystery, when it comes to my list of transplant concerns, getting memories from the donor and having to solve their murder is not one of them.

Friday, 4 July 2014

Sharpie Pointillism

I haven't had much time to do any new watercolour paintings but I have been doing some more of the sharpie pointillism pictures. They are fun to do as I don't feel I need to complete the entire thing in one block of time. I've been spending more time out on the terrace and it's easier to take out my book and sharpie than trying to set up paints outside. It also helps that if I mess up an area, I just add some more dots.

I was trying for a 'balloons dispersing into the sky' effect. 

Thursday, 3 July 2014

Where is my transplant....

Well, as you can tell, June has passed and all is still quiet on the transplant-front. To be honest, I'm discouraged and am getting somewhat disheartened. For some reason, I really thought that June was going to be my month.

I'm not really sure why I thought it would be June, it just seemed like it would be the perfect month. I would have been recovered by the time the hot summer heat/humidity arrived, so I could really enjoy the summer. Plus, if I had the transplant last month, my three month recovery would have ended just as the apartment lease ended.  As well, not to be insensitive, but I thought that there would be an increase of drinking and driving accidents by teenagers at graduation parties which would mean more donors that are closer to my body size. Obviously, we can all agree that it's good that teenagers are not getting into fatal accidents around graduation.

The lack of transplant in June means that the timeline I had imagined when I moved to Toronto is gone. I hadn't really anticipated getting a transplant before May but I thought that I would at least have one by the end of June. I was so good with the waiting bit when I didn't think the surgery was going to happen. However, now that June has come and gone, my waiting anxiety has increased. I feel as thought I should create a new hypothetical timeline but I wouldn't even know which month I would guess at this point. I should start taking bets on it, 6/1 odds on August anyone?

Just for everyones information, according to the Trillium Gift of Life Network, as of July 3rd, in Ontario, there are 84 people waiting for a lung transplant and there have been 51 lung transplants so far this year. At least transplants are happening!

Wednesday, 2 July 2014

Transplant Clinic

I had a doctor appointment with the Transplant Clinic team today and much to my surprise, I was out of there in 30 minutes. It was a very pleasant surprise.

The doctor reviewed the results from the Echo and CT scan I had done in early June. The CT scan showed an increase of mucous in my lungs, particularly my left lung, since last year. The doctor recommended that I increase the frequency of my chest compressions to try to dislodge some of the buildup. It's not surprising that there is more buildup since last year considering everything that has happened in the past year.

The surprising part of the visit was that my Echo showed that I have a small murmur in my left pulmonary vein. At least I think it was the pulmonary vein, the doctor rambled off the information so fast that I didn't really catch it all. He called it something that had a really long name, I think it was cardio-something-scary-sounding-osis. However, I was told not to worry as my echos have always been normal so he thought it may be that the technician was being over cautious. He is going to check with the cardiologist to get a second opinion. I foresee a repeat Echo test in my future.

Other than the Echo and CT scan, there was nothing to talk about as once again, the doctor couldn't find any of the information from my appointments with the CF team.

For those who have asked me recently about the record wait time for a lung transplant, I tried to get the answer from the doctor but he refused to answer. Instead rambled on about how the average wait is 6 months (it's a different average from every person), and that since I'm level one, the wait can take longer (obviously). I repeated my question three times but he just kept repeating that the average wait is 6 months. He could have just said he didn't know.