Thursday, 31 October 2013

Happy Halloween!!

Happy Halloween!! We aren't doing anything this year. I didn't even get a pumpkin to carve, for some reason I feel like the condo management would frown the whole 'putting a pumpkin in the hallway outside my door'. If not management, the cleaning person would not be pleased as it slowly rotted. And it seems silly to carve a pumpkin if no one will enjoy it. The condo might be having a thing for kids in the lobby but seeing as there have been no notices about it (there are notices for everything!), I am assuming no. Although if kids were allowed to trick or treat in buildings it would be a pretty sweet haul as there are more people in our group of condo buildings than the entire population of Petitcodiac. (est. 1.5 people per unit,12 units per floor, 36 floors, 4 buildings = 2592 people)  Instead we will celebrate by buying cheap Halloween candy tomorrow.

In Halloween celebration, I made some cards. I do love making cards.

 In this case, I get more of a kick out of the envelopes.

I hope I didn't give the postal workers a scare.

Wednesday, 30 October 2013

The Christmas crafts have begun!

I knitted a Christmas tree dishcloth! I found a model one online but I felt that theirs looked too overworked so I simplified it a bit.  I will be subsequently ruining any Christmas surprise for my family over the next 2 months. The surprise will be whose stocking it ends up in.

Tuesday, 29 October 2013

Thank you student loan!

My student loan has been forgiven! Hurray for having a severe permanent disability that renders me unable to be employed...! (or maybe not so much) 

I have been in repayment assistance since February which has thankfully meant that I haven't had to worry about making payments. However, it is nice to know that I won't have to keep reapplying every 6 months or worry about reaching the max months allowed for repayment assistance.

So thank you student loan!  I will miss all the times I hit '1 for English' 7 times before the system kicked in, or all the times you called me just to let me know you would be mailing me something. And then you mailed me the same letter twice. Or when I received two letters from you, one saying I had to pay you my right arm for interest incurred and the other saying that all was fine. We may have had our differences and I may have (yes, I did) sworn under my breath at you for your inexplicably horrible website and high interest rates but now I never have to speak to you again. Woohoo!

Sunday, 27 October 2013

4 weeks in Toronto.

I have been living in Toronto for a month although it really doesn't seem that long but at the same time it feels like forever ago since I was in NS. Time is a funny thing.

Here are some of my observations about Toronto thus far:

- The traffic is not as terrifying as I was expecting. Sure it takes at least 10 minutes longer than google estimates and the highways can be a little crazy at times but there are 2.6 million people living in the city so it is to be expected. However what is terrifying are the people who blow through the red lights, I don't mean yellow lights, full on 'turned red' lights...which seems to be everyone except me. I was vindication when a Porsche blew by me (I had fully stopped in the left lane) in the right lane through an obviously red light only to be pulled over by the cop sitting in the intersection. Muhahaha

- Few people wear a helmet when cycling. A lot of people cycle as it is the fastest way to get around and so few people wear helmets. I don't understand it at all. There is so much research showing the effectiveness of helmets in preventing brain injuries. Put a helmet on people! No one wants to pay for your preventable health bills.

- Everyone has been really nice. Except for a few people (but there are a few jerk everywhere), people are generally nice.

- There is so much to do! While a lot of the stuff cost money (people seriously need to stop paying 150$ for nosebleed seats at the leafs games), there are usually cheap nights at the museums or ways to find discounts which is pretty great.

- The restaurants have not been as awesome as I had expected. I've only been out to eat a handful of times since moving here but the few times I have haven't been as good as I was expecting. I'm not sure if it is because when I was here in July, every restaurant we ate at was delicious so I had high expectations (I do have high food expectations in general) but I did think that most of the restaurants would be superb because why would anyone go to the mediocre places when there are so many options? Maybe I just haven't had good restaurant luck this past month.

- I can't complain about the transit system. I mean transit sucks everywhere but what is really nice here is the fact that every morning when I walk to the bus stop only to watch the bus pull away, I only have to wait for 5 minutes for the next bus. However, I did think that Torontoians would be better at moving to the back of the bus.What is awesome is that they let you take disposable beverages on the bus!

- The library system is amazing! They have all of the books and so many copies! I am number 1010 for the J.K. Rowling detective book but they have 311 copies so the list moves pretty quick.

Friday, 25 October 2013

A rant about our system

My Canadian Disability has finally been processed and I am back on the gravy train! The gravy train of 580$/month (make it rain!!) Seriously government? Now I know it is considered 'tacky' by some to talk about money but I need to rant for a minute.

Let's consider for a minute a rough estimate for my monthly living expenses. Rent: 1700$, groceries: 200$, internet/phone: 80$, parking: 150$, bus pass: 128$. Total: 2200$. Yes I could cut out parking if I got rid of the car and I could not have the Internet or not eat food but even without those, the difference between how much it cost to live versus what the government expects is ridiculously different.

Not even to mention that I went off work in February, got 16 weeks EI, and then had another 5 months before this got processed. Granted two of those months were waiting for my doctor to fill out her part of the  form but even without that, the system still expects people to wait at least 3 months before anything is processed. I am fortunate to have a savings account that could carry me over those months but what about everyone who goes off work unexpectedly, how are they suppose to survive without amassing giant credit card debits? No wonder the proportion of people with disabilities who are in poverty or homeless is so high (In the US it is 42% of the homeless population vs 17% of the general population, I would assume Canada would be quite similar. ). What else are they expected to do in our crazy system?

As Canadians, we claim we have a great safety net for people who need help. We pride ourselves on the fact that everyone gets health care and social support if needed. And then we, mostly our politicians, turn around and blame those who need help for taking advantage of the system or not working hard enough to get themselves out of poverty. As if having a disability is a personal desire and we would rather be disabled than be able to work. Trust me, I would do anything to be working again. It has nothing to do with wanting it enough.

So can we stop blaming people for not being able to get themselves out of their situation? Yes there are jobs that some people with disabilities would be able to do that would help prevent them from relying on the government. However,  how are people suppose to return to school for an education upgrade to get those jobs when when the support system barely gives people enough to live month to month?  

Not to say that I'm not thankful for the support that the government does give me, I'm sure it is better than a lot of countries and at least NS reimburses most of the rent and will pay for my post-transplant drugs (seriously NB, pull yourself together and start providing funding for people). But to say that it is better than some countries therefore we should stop trying to improve on it, isn't good enough.

I guess the point of my rant is to say that I am realizing more and more that we have system that makes it easy for people (especially those with a disability) to fall into poverty and very hard for people to get themselves out.  And I don't have any answers on how to make it better, I'm sure I barely know half of the problems. However, before this, I was incredibly unaware how much the social support system sucks. I had always assumed that people at least got enough money to cover most of their basic living expenses. So...hurray for real world education about issues......?!

Thursday, 24 October 2013

I made a hat!

I made a hat! Unfortunately it is a stylish slouchie hat for a baby and not for me as it barely fits over my hand. Apparently I should have followed the instructions a bit more closely and used bigger knitting needles. At least I learned how to make something other than a dishcloth! A small step in the right direction.

Wednesday, 23 October 2013

RIP Pharmacists

I had a check-up appointment at the CF clinic yesterday. Despite the fact that it was 4 1/2 hours long (I drained my phone battery playing candy crush and killing zombies), it went well. It was my second time at this clinic (first time back in July) and everyone is super nice and took time to review my chart even though they were incredibly backed up. I've lost a little bit of weight since July but my lung function has improved slightly so it wasn't too bad in the end.

The doctor gave me a real prescription for the salt-water masks that I have been using the past two months (I've been using pharmacy samples) as the mask is quite effective at bringing up all the crap in my lungs in the mornings. I took the prescription down to where they said the pharmacy would be but I couldn't find anything that said 'pharmacy'. The hospital is quite old and looks like a place where one would film a horror movie so I wasn't very keen on wandering around trying to find where the pharmacy was hidden. I asked the kind volunteer at the help desk and learned that the pharmacy is no longer called a pharmacy, it is now a 'prescription care center' and I had walked by it three times.

I guess I missed the announcement that the word 'pharmacy' is no longer vogue.

Are pharmacists still a thing or should I be calling them 'prescription care providers'? Not that anyone would know what that means. I guess their main job is filling prescriptions so maybe the name change makes sense but they also look at people's random rashes and tell you if you do indeed have pink eye so maybe we should be calling them 'prescription, pink eye, and random rash care providers'. That would clear up all the ambiguity that the word 'pharmacy' creates.  

After my prescription was cared for, I was walking to catch the bus when a guy started to ask me for money but instead told me that I looked strung out and that I needed to relax. Obviously I still looked confused about the disappearance of pharmacists.

Monday, 21 October 2013


I got my pager today! I have joined the realm of med interns, super secret spies, and....whoever else happens to still be using technology from the 50's. It is paid for by Bell who gives free pagers to all the people on the transplant list. So thank you Bell for doing something nice for people.

I feel better having it as it means I no longer have to panic every time my phone battery goes below 20% or the very few times I happen to restart it. However, now I have something else to try not to loose and to have on me at all times. I am not responsible enough for this! I misplace stuff all the time. At least it makes the loudest shrill eardrum-piercing-noise possible so I will be able to find it if it ever goes off. Which with my luck, will probably be in the middle of the sad song of Les Miserables which we are going to see next week. Woohoo!

My fancy new accessory!
My test worked! I am suppose to test it once a week but knowing me I'm going to test it every day and totally drain the battery for when it is actually needed. 
Why are you so angry Mr. Pager? Maybe because no one loves you anymore?

Sunday, 20 October 2013

Apartment Pics

I know everyone has been wondering what our apartment looks like now that we are all moved in (you are about to be shown either way). If you don't remember or missed it, here is the video of the apartment my cousin made when he was apt hunting for us (again, thank you!).

Here it is with a much more 'lived in' quality:
Our home!

Living area
Bedroom with closet
View to the left
View to the right

Saturday, 19 October 2013

Can we please talk about something else?

On Friday I think I worked out why I can't haven't really been able to connect with any of the other people at physiotherapy. It is partly because I would rather listen to my podcasts but partly because I am trying so hard to not make the transplant stuff consume my life and if I have to talk about it at physio, it is just another part of my life being consumed by transplant talk. I know that is entirely irrational because the only reason I am at physio is because of the transplant. However, to me it is more like going to the gym rather than going to a place of 'treatment'.  The only exception is that this gym is full of 50 year-olds in baggy shorts instead of 20-somethings in tight lulu clothes. 

For my own psychological well-being, I need other things in my life than this damn surgery. I have tried my entire life to not let my disability define my identity that I don't want my life to be consumed by the transplant. I still need to go to art galleries, and out to restaurants, and make art, and read books, and do everything possible to not have my entire life be about this surgery. It is already such a huge part of my life, I mean I moved to Toronto to have the surgery, I don't need to consistently be talking about how long I've been on the list or about how I feel or about how hard it is to sit around and wait for a call. That is why I have my blog. :)

However, in physio, that is what every talks about. I do understand that it is like a support group for those who don't go to the actual support group. And yes, when I am post-transplant, I will probably want to compare scar healing rates with other people but I'm not there yet. I want to talk about Rob Ford's latest scandal (there seems to be a new one every week) or the NB protests or anything other than how much this sucks. Because I know it sucks. We all know it sucks. Can we please talk about something else*?

*I will probably contradict myself next week when I find my surgery soul-mate who I will talk about the transplant stuff with for hours while on the treadmill.

So the note of talking about something that a jazz band in the rock section of the ROM? Why yes, yes it is. Last night, we went to the Friday Night Live at the ROM where they had music, food, drinks, and best of all, no children running around the animal exhibits. 
I would not make a good paparazzi-ist.

Thursday, 17 October 2013

A visit from the oxygen man

The oxygen man (also know as a respiratory therapist) showed up for a consultation yesterday to make sure that I was doing ok with my oxygen. He obviously disliked his job or co-workers or someone because as soon as he came in, he asked me who was paying for the oxygen because his form said that I was private pay. I said that I was covered under the NS CF plan and have had that confirmed with both Vital Aire in Toronto and NS. He replied that I was probably wrong and that they will only bill NS for 3 months and then I have to pay from pocket.

He then went on a huge rant about how his co-workers never provide him with the right information and billing shouldn't be part of his job. He called two of his co-workers and left them passive aggressive messages about how he didn't have the right information and could they please do their jobs better. It was all a little more drama than I was expecting from the oxygen man.

While he was waiting for a response, he took my vitals with and without oxygen and had me go for a walk down the hall connected to the machine without oxygen and after 5 minutes my levels super dropped to below 88%. Arg! (I was 98% on oxygen, 94% on room air, 95-100% is the normal range, below 88% is not good news)

I've been told that I should be using oxygen for every day walking around but no one had ever shown me the proof so it was easier to ignore. Now I have empirical evidence that I should indeed need to be on oxygen even while casually wandering around the city. Because when I did the same walk with the oxygen, my oxygen levels barely moved.

The problem is that I don't really notice when my oxygen levels go super low. I mean I know I get short of breath when I'm walking up stairs or a hill or something but I don't notice when I'm just walking on flat ground. However, just because the side effects aren't super obvious, it obviously isn't good for my body to be deprived of oxygen. It means my heart and body has to work harder to get enough oxygen to my limbs and brain. This makes me have endurance as I'm working harder to do 'normal' activities and in the long run, weakens the heart. It also can cause swelling in the feet and skin discoloration but I haven't noticed those side-effects yet. But basically, it is bad to be oxygen deprived so I really do need to start hauling my oxygen around everywhere.

But I really don't want toooooo. *whinny voice* I hate feeling like a sick person and hauling oxygen around with me everywhere is going to make me feel and be treated like a sick person. I know rationally I am sick but it makes me feel better when I don't have reminders of it on my face.  Come on big pharma, get off your butts and make me an oxygen pill (non-suppository please). 

Before the oxygen man left, after finding out that I was right about not having to pay from pocket, he told me that the way most transplant people with CF end up having their transplant because they have flare-up which boosts them too the top of the transplant list. I said, 'yes but that means you aren't as healthy for the recovery process so I will try not to go that option'. He responded that getting sick is the best way to get the transplant so if I have a cough, be sure to tell the hospital that I am sick so I can be jumped to the top of the list.

Thanks oxygen man for those words of encouragement!

Wednesday, 16 October 2013

I swear I'm not antisocial.

Physio was a bit more intense today as I had the treadmill going on mph and not kph. Funny how that makes a difference. It was super hot in the physio room which meant that I coughed quite a bit while I was getting started. I hate exercising at a regular gym because everyone is either super concerned or they glare at me as though I have the latest contagious disease. I thought the hospital gym would be better but the physio assistant came running over twice to see if I was ok and if I needed something to drink. I know he was just being nice but it was a bit annoying (as I had my water bottle sitting directly in front of me). Shouldn't they be use to people coughing seeing as every single person has a lung condition?

I also realized that I am way too socially awkward to bond with the other people at the gym. First of all, everyone that is in the same area as me is at least 20 years older. (The people with CF tend to be the only other young people there but of course we are banned to opposite sides of the gym). Not that I can't bond with older people but they seem to stick together and already all know each other by default of having spent a lot of time together in the physio room.

I'm not a chatty person so unless someone else initiates the conversation, I tend to just stick to myself. I know I should be bonding with the people who are going through the same experience but I honestly don't want to talk about how there aren't enough lung donors or about how long you have been on the waiting list (those seem to be the two topics up for discussion today). I didn't feel like I had anything to add to the conversation. It probably doesn't help that I tend to listen to my podcasts while on the treadmill or bike which doesn't exactly invite conversation (in my anti-social defense, the physiotherapist told me they don't like people talking while on the machines as it stresses the body more and the person should be focusing on breathing correctly instead of talking). The one conversation I had today was about how they needed more fans.

The other way to bond with people would be through Isaiah as most of the 'caregivers' sit together while everyone is on the machines. Isaiah is not one of those people as the one time he came with me, he sat by himself and played on his phone while waiting for me to tell him to disinfect something. It also doesn't help that he is the least chatty person in the city. He is definitely not about to start a conversation with someone about how long they have been on the transplant list and how that makes them feel.

I'll just stick to myself for now and eventually a new person will show up and I can befriend them with all of my intimate knowledge about how they really really need more fans.

Tuesday, 15 October 2013

Maybe I should stop being so blunt.

I finally went for a massage today after months of saying that I was going to go. I find they really help relieve the tension around my shoulders and lower back. I went to the massage school here as the massages are much cheaper, the only downside is that the students do a very thorough assessment at the beginning before starting the actual massage. I guess that it's good they want to cover everything but do they really need to know my entire health history?

I put on the form that I was waiting for a lung transplant as I figured it might help if they know why my back muscles are so tight. The massage therapist obviously knew nothing about the lung transplant process (because really, why would she?). She asked me when the surgery was scheduled to I replied that 'no, they call me whenever lungs are available and I go to the hospital'. She responded that that really sucks and it would be easier if they could just schedule it. I agreed but said something like 'yeah but they don't know when people are going to die and that is how they get the lungs'.  That was when she looked slightly horrified and moved onto another subject. I forget sometimes that people aren't very comfortable talking about death.

I guess I should be a little more sensitive about the issue when talking to random people.

The good news is that the massage was very good (I had to tell her twice to give me more pressure as I like super deep massages but once we got past that, it was excellent) and I feel all limbered up. All ready for physio tomorrow morning!

Sunday, 13 October 2013

Happy Thanksgiving!

Happy Thanksgiving! In between the turkey and the family gossip, remember to take a minute to be thankful.

I am thankful that even if I don't get to spend thanksgiving with my immediate family, I do have family here that I will be feasting with tonight. I honestly didn't think I would feel this homesick on a holiday that I skipped a lot of the time when I was in university. I think it is harder because the option to go home is gone. Or something. I don't really know why it feels so much worse. I literally saw my family 3 weeks ago. It's amazing how you spend so much time trying to carve out an identity away from your family only to later realize that you just want to hang out with those people. Oh the irony.

Alright, enough of this introspective nonsense, it's time to eat!

Snoopy and the gang also wishes you a happy thanksgiving!

Saturday, 12 October 2013

Pictures from Toronto

I think we all need a break from all the medical talk.

Here are some pics from our travels to Toronto and what we have been up to the past two weeks. It's still a little hard to believe we've been living here for almost two weeks.

Off we go! We literally had no more room in the car.
Isaiah said 'you're not taking one of those ridiculous foot travel pics are you?'.Yes I was.
What a fabulous bridge.
Who needs a GPS when you have an actual map? 
Quebec! Good-bye Maritimes :(
Ontario! (If only it was really that fast of a transition in real life)
Gah Toronto traffic!!
 Ok, so maybe not as much traffic as one would think. 
View from the apartment to the left, can you find the CN tower?

View to the right (obviously on a different day).
We went to the AGO for their free night, I didn't take any pictures of the art so here is a picture of a postcard of the art. Pretty much the same thing.
There was an all-night art fest last Friday night. There was a lot of bike-themed art and one sock-themed art. It was a giant canopy of pairs of socks.

Ai Weiwei built a giant sculpture of bikes for the night.
Last Wed night we went to the Ai Weiwei exhibit at the AGO. This backpack snake represents the each of the children who died in the 2008 Sichuan earthquake. The entire exhibit was very moving and depressing.
More Ai Weiwei (the quote not the people)
Yesterday we went to the Royal Ontario Museum and looked at rocks. You would think dating a geologist, I would have more shinny stones like this one but that doesn't seem to be the case. Apparently they don't get to keep the minerals.

Friday, 11 October 2013

I can't tell if I'm a 3 or a 4

Physio was a bit more intense today. Mainly because they had me do the 6 minute walk test again (I did one back in July), this time on oxygen so I had to haul a little oxygen cart up and down the hallway with me. I managed to trip over it once, run it over the physiotherapist's foot, and drop it on the ground. I'm awesome.
However, it did mean that my legs were tired at the end of physio as I pushed myself pretty hard on the walk and then still had to do my treadmill and biking. Yay for feeling that I actually had a workout! I soaked my sore leg muscles in the pool this afternoon, I love having a pool in the building.

I also realized that when the physiotherapist said to put the treadmill at '2.8' she meant 2.8 mph and not kph. I didn't notice until the end of the 20 minutes that the treadmill had different mileage settings. That might explain why I felt like I was taking a casual stroll and was wondering why everyone else around me looked like they were working much harder than me. Oops!

The worst part about physio for me is the self-reflective bit. 'How tired are your legs on a scale from 1 - 10?' 'How bad is your breathing on a scale of 1-10?'. I don' t know! If 10 is the worst I can imagine, then probably a 2...or 3...maybe...? They want me to be working at a '3-4' which is 'mild to moderate breathing'. I don't know what that means. I just said I was at a 3 after my biking and 2 after the treadmill (I was on a casual stroll after all) because I really have no idea but I did know that biking was more strenuous than walking. I know for sure that I am not at a 10, which I assume would be at the asthma attack range, but I'm not at the zero range. In Halifax, back in February when I did the walk test, the physiotherapists told me I was an one at rest because I was breathing heavy. So that is what I say now because I don't even notice that I'm breathing heavy so I am going from her judgement.

I think it all comes back to me wanting to be the perfect patient. I feel like there has to be a right answer, I just don't know what it is so I say whatever it is I think they want to hear. I know logically there is no wrong answer although I imagine saying you are a 10 after light walking would be a wrong answer.  I just don't know if yesterday I said it was a '2' and then today I say '3', what day was the right day? Arg!! I don't like this subjective nonsense. Can't we go off the oxygen levels and heart rate measurements? Who cares how sore my legs are? If I fall over, assume they are a 10.

Thursday, 10 October 2013


I had my first physio appointment today! It was a bit boring at first as everyone showed up at once and I had to wait for the physiotherapist to find my file and to get around to showing me what I should be doing. I was sent over to the far side of the room away from everyone as there was another person there with CF at the same time (he was fairly easy to spot, the only other youngish person who also had a crazy cough). We each have to stay on our own sides and I have to ask people to fetch me the weights or my workout card as I am suppose to touch as little as possible (they are seriously intense about this).

Once I actually got to work out a bit, it was fairly non-intense. I assume it will get more intense as they figure out a good routine for me. I basically walked on a treadmill, did a few weights and stretches, and rode an exercise bike for a few minutes until I got kicked out as the 230 group was coming in and there was someone else with CF in that group. I will definitely have enough time for my schedule once I don't have to wait for the physiotherapists.

Even though I was in the side by myself, I did met one man (well, actually his very chatty wife) who had a double lung transplant 2 months ago and was listed for only 3 months which is a good news story. Everyone else was carting around their oxygen tanks so I assume they are also waiting for transplant. Back to the gym in the morning! Next week have a Mon (except not because it's a holiday)-Wed-Fri schedule which makes a bit more sense.

Wednesday, 9 October 2013

What does happen when I get the call?

Last night my phone rang at 7 which was when I was expecting my landlord to stop by but I still nearly had a heart attack when I heard the phone ring. I hope that panic goes away after a few days. With my panic attacks in mind, I thought it might be helpful to review the steps of a 'transplant' call and the surgery and recovery process.
  • When a potential donor is matched with me, the transplant coordinator or someone from the transplant team will call my phone. If I don't answer, they will call Isaiah. If he doesn't answer, they will call my pager (I am getting one in the mail soon). If they can't reach me in an hour, they will move on to the second match. 
  • After the call, I have to stop eating or drinking anything and call a cab to the hospital. 
  • I must remove all jewelery, take out my contacts, and grab all my medications and health card to take with me. 
  • I have 2 1/2 hours to get to the Toronto General Hospital. 
  • Once I get to the hospital, (I go through emerg if it is nighttime) I will have a ECG, x-ray, blood tests, and have an IV started. This can take 3-4 hours and at any point in this process, the surgery may be called off. I will not be put to sleep unless the surgery is actually going to happen. 
  • Isaiah is allowed to wait with me while I learn if the surgery is going to happen. At this point, I'm sure I will have called everyone I know. 
  • If the surgery is a go, Isaiah gets to call my family as they frantically drive to the airport and then wait in the waiting room for 8-10 hours while I have crazy dreams in drug-induced dream land.
  • My family can visit immediately after the surgery even though I'll be on crazy amounts of pain medications, delirious, and connected to a ton of tubes and machines. Great family bonding time.
  • After I can breath on my own (can take a few days or weeks), I get transferred to the 'Multi-Organ Transplant Step Down Unit' also known as the 'Acute Care Unit'.
  • When I graduate from that unit, I'll go 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. 
That's all! One double-lung transplant done! I'm going to have Isaiah or someone else in my family update the blog frequently to keep everyone informed when the time actually arrives.

Tuesday, 8 October 2013

I am officially on the lung transplant list.

I have the Internet again (It is sad how I went through minor withdrawal the past week and half)! On the same day of my appointments! It's been a big day.

Today I met with the finance person, the transplant coordinator, and the surgeon.

The finance person basically reviewed the fact that I will have to pay for some of my meds upfront post-transplant but that through the NS family plan, I will be able to get most of it back (minus a premium of course). She didn't even want my credit card information which was excellent. She said the pharmacy will deal with all of that when I am discharged post-transplant. It was all information I already knew.

The transplant coordinator meeting was a bit longer as she reviewed everything I had already read in the transplant manual they had given me in June. She went over the 'what happens when you get a call' (DON'T PANIC but get to the hospital ASAP!!) process and 'how to stay healthy while waiting for a call' (don't touch anything or socialize with anyone!) .

I need to fill out another power of attorney form (this time with witnesses) for her. She had an official booklet and everything that is much better than the word doc that I had created when I made my other one.  She didn't push the support group on Isaiah as much as I thought she would but did mentioned that it can be super helpful for some people (I, of course, am not allowed to go). She also gave me a pamphlet about the cautions of using social media during the transplant process and to be careful about the media getting ahold of the story (Obviously I am ignoring all of that as I continue to blog details of my life).  She said in the past, families of the donor have shown up to the hospital as they found out through the media or Facebook who the donie (donee? doney?...person who gets the organ...) was and were not happy. That seems absolutely ridiculous to me. Who wouldn't want me to have the lungs of their deceased family member?
I'm awesome.

The surgeon meeting basically involved Isaiah and I signing a bunch of papers saying that I understand the risks of the operation. He listed all the possible complications: infection, cardiac arrest, stroke, pneumonia, death, etc... He said that for people with CF, the rate of death for the surgery is 2-3/100 patients but he would put my odds at less than 1% if the surgery happened right now as I am young and relatively healthy ('healthy' is such an subjective word).  So that's not bad. I mean it is never as good as one would hope but it is not horrible. He didn't go into details of the actual surgery (like where he will cut me open and all the crazy machines I will be connected too) which was a bit surprising but I have already read all about it so I really didn't need to hear it all again.

The tragic part of the day was when the surgeon told me that I can't have a boob job post-surgery. My dreams are ruined! Apparently if I had had one beforehand, they would have to remove it during the operation and they wouldn't put them back in. They also won't do any cosmetic adaptations during the surgery. I guess they have better things to do than worry about implants or tummy tucks. Silly surgeons focusing on things like 'transplanting the actual organ' and 'making sure your heart is still pumping'.

After signing the paperwork, I met with the physiotherapy team and I start regular physiotherapy on Thursday. It is 3x/week and it is essentially a bit of cardio, weights, and stretches for an hour and half. It looked pretty non-intense but I'm sure they will make me walk faster than the 70-something woman who was there when I went in (they don't appear to follow exercise crazes so I will unfortunately not be throwing tractor tires around the room). That will be the only time when I will meet other people who are also on the transplant list. Of course, if the scheduling is right, none of them will have CF as they don't want us in the same room together (infection control people are crazy!) but at least I'll meet somebody. I suspect most of them will be older than me.

So, by the end of today, I am officially on the lung transplant list and am essentially waiting for someone my size and blood type to die (it sounds horrible but that is essentially what I am doing). I can never let my cell phone leave my side (or my pager once that arrives) or leave the area. I am less anxious about the entire thing at this point than I thought I would be (at this precise second, that may change in an hour).  However, if I get the call tonight I will definitely panic as I don't have any of the 'what to do when you get the call' stuff ready. I am too busy updating my podcasts and catching up on buzzfeed. You know, important stuff.