My doctor told me I need to be kissing more people

I don't have cancer!!

The appointment was pretty much a waste of time. The doctor just wanted to tell me in person so I would know that her news was 'not a big deal'.

What she told me is that I do not have the Epstein Barr virus (EBV, not to be confused with the Ebola Virus). This would normally be a good thing except when it comes to transplant, because the majority of the general population have the virus, it means most likely I will be getting a set of lungs with the virus. If I contracted the virus under normal circumstances, it would not be a big deal but as I will be on a butt-load of anti-rejection meds post-transplant, I will have no immune system to fight off the virus.

So if I get a set of lungs with the virus (which I probably will), there is a 5-10% chance that it will lead to Post Transplant Lymphoproliferative disorder (...I made her write it down for me) which is a lymphoma-like condition. It would be treatable but it would mean lowering my anti-rejection meds which is never a good thing.

The best course of action would be for me to catch the EBV now while I still have a bit of an immune system. It is possible that I am immune to the virus, the same way some people are immune to HIV or the Bubonic plague. EBV is transmitted by kissing people so it is obvious that I did not make out with enough people before I 'settled down'.

I'm not worried about this news because 1) I need to actually have the transplant 2) I might get lungs without the EBV 3) Even if I do get lungs with EBV, I might be immune to the virus and 4) Even if I'm not immune, there is only a 5-10% chance it will lead to cancer. The Dr just had to tell me so post-transplant if I get lymphoma, I'm not wondering why no one told me it would be a possibility. It just adds to my post-transplant list of "cancers to watch for" along with skin and colon.

I think the best preventative option is to have a raunchy night out at the Dome.  It is for my health. I will make T-shirts "Kiss me so I don't get cancer".

Unexpected doctor appointments!

I got a notice in the mail and then a confirmation call on Friday about a clinic appointment for me on Thursday. I just had a clinic visit at the start of August and the typical CF clinics are on Friday so obviously I have cancer.

Ok, realistically it is probably just to a 'prep for Toronto' appointment. Unexpected doctor appointments always make me nervous. It is annoying to have to go to Halifax again this month for something that I'm sure they probably just tell me in an email (unless I really do have cancer).  I guess the plus side is that I get to get some sushi!

Damn you student loan!

So funny story.....

I called student loan to see the status of my severe permanent disability application and it turns out that they never received it. Despite the fact that I had sent it in to them in June and when I called to confirm the doctor had sent in their part, the guy (coincidentally, the same guy as today) said that it was in the 'processing' stage with no problems.
Ha. ha. ha.

If approved, the application will forgive my student loan so I don't have to keep reapplying for payment deferment while I am not working.  If you have a 'severe' enough disability from which you will never recover and it looks like they won't be making their money back from you, you can apply. It means that I will never be able to apply for another student loan again but that is not really one of my top priorities at this moment.

Thankfully, the doctor had sent me the a photocopy of the form so I don't have to get them to fill out yet another booklet of paperwork for me, but arggggg. Considering they told me it would take several months to process the application, it looks like I have a long wait ahead of me.

So the big question is, to whom did Canada Post deliver my application? Is someone out there reading all about my medical history? Not that I really care who knows about my condition, it is more of a curiosity thing. Also, why did the guy say they received my application when they apparently didn't? And why does student loan make it so easy for me to hate them?

Good times.

Hey, remember the time they lost all of our personal information?

Stupid dreams making me process emotions

Last night I dreamt that I was back at work. I was having a ball until I got to the paperwork part of the job and all the forms had changed. At the end of the day, while I was trying to figure out how to fill out my time card, I realized that I couldn't actually get paid because then the government would never give me any type of social assistance because I wasn't suppose to be working.

While I was trying to figure out how to get around the finances, I woke up. I knew it was just a dream but it brought back all the emotions of how much I enjoyed working and how much I hate that I can no longer work. I guess my mind is still trying to process dealing with that loss in my life.

I think it was triggered from a conversation I had with my partner last night when I said that I didn't want to move to Toronto and he replied with a nonchalant,  'So don't, go back to work instead'. I may have slightly overreacted and told him loudly that "If I could go back to work, I would, and it wasn't my choice to stop working but it was making me get sick all the time and that my lung function was crashing out as a result and I would be expediting my death by returning to work and is that what he wanted!!"....I may still be harbouring some resentment over the fact that I can no longer work.

Once I had calmed down, he explained that he was just trying to be supportive and say that I should do what it is that I want to do. I really do think that I should be moving to Toronto as it is the best option for me, it is just hard to be saying good-bye to everyone and move. I really hate moving.

So when I woke up early this morning, I was feeling a lot of emotions about moving and not working. I couldn't get my brain to stop the 'what-if' loop where I think about every possible outcome on a repeat track in my mind. In the end, I put on a CBC documentary on my iphone about the 'Dance of the Bee' and fell back to sleep learning about the intelligence of bees.

Excuse my soapbox for one minute

To anyone having a milestone celebration this year: please embrace it. Please don't be scared of the future or of getting old. I know that our society says that aging is bad and that we must hide any signs of aging. But please, as someone who may never get a chance to get 'old', embrace your age lines or spots or bags or whatever part of our body we are currently suppose to hate. I get that it is scary to age and not be young anymore, I understand you want to look 5 or 10 years younger. Sure, you have that right. I'm not saying to stop dying your hair or plucking your eyebrows but while you are getting your face injected with botox, just remember that you are one of the privileged who are fortunate enough to be born in a place and time where aging is possible. Don't waste that privilege by wishing it away. I know you probably have a list of all the things you thought you should have accomplished in the last decade but honestly, it doesn't matter. Be thankful for what you do have and that you still have the chance to make your dreams happen.

Stop complaining about getting old and start celebrating it. Seriously people, you have no idea how many people would rather be in your shoes.

Aaaand....end rant...

I like bright colours and I cannot lie

This is a canvas I made a few months ago. I was adapting from a canvas I saw on Pinterest. Its kind of an abstract multi-coloured tree look.

Social Psychology

I decided to do two more Coursera courses despite all my misgivings with the last one. One is 'Social Psychology' where I am suppose to learn

"... an introduction to classic and contemporary social psychology, covering topics such as decision making, persuasion, group behavior, personal attraction, and factors that promote health and well-being". 

And the second being  "Learn to Program: The Fundamentals" which

"introduces the fundamental building blocks of programming and teaches you how to write fun and useful programs using the Python language."

I think the programming one is going to be the hardest seeing as I already have a degree in Psychology and I don't know anything about how to write programs or the 'Python language' (I'm not a Slytherin! *Hehehe*). However, social psychology was only really covered for a few chapters in first year of psych class so I think that class will be super interesting too.

Both courses started while I was in Yarmouth (I have bad timing) where I had no Internet so I am already 2 weeks behind the video and readings. That is about right on par with all of my other university courses.

I know I should be looking for apartments or packing but I still have more than a month and sometimes it is nice to learn something new.

Yay learning!

Mouse!

I got the call from the transplant coordinator last week in the evening as my family was finishing up supper. We were all pretty tired from spending the day cycling and swimming. My sister and I had done a short 13 km route while everyone else had a 40 km ride (yes I took my oxygen tank with me). So we were all drinking tea in the living room discussing my acceptance into the transplant program when a brown mouse scurried behind the couch.

Immediately all focus was off the transplant as Mom screamed, jumped off the couch, and and ran into the kitchen. Dad also moved pretty fast off the couch to arm himself with a broom. We had seen a mouse the night before in the kitchen while having an intense game of 45s but it ran under the stove before we could do anything. We had been hoping that it was one time occurrence. Apparently not. Mom had emailed the owner that first night to let them know about the mouse sighting and he said that traps would be dropped off but they hadn't arrived that day.

No one was thrilled about this second mouse sighting.  Mom was convinced that the mouse had ran into their room which was off the living area. We all tried to convince her that it had crawled under the couch/pull out bed instead. Isaiah was sleeping on the couch so he was not please with that speculation and thought maybe the couch should be moved to take a look. 

Mom armed herself with a broom while Dad and Isaiah, holding a broom and garbage can respectively, slowly pulled out the bed. Amy and I were content to watch the show from our chairs on the other side of the room. No one actually mentioned a plan but I think the unspoken idea was to have Dad and Isaiah force it out of the bed and if it didn't somehow jump into the garbage can itself, Mom would sweep it toward the screen door at which point Amy or I would somehow leap up over the fleeing mouse to open the door and let it out of the cottage. It was a fool-proof plan.

Unfortunately, we never got to see our plan in action as the mouse was no where to be found. We then unanimously decided to move into the kitchen to play some board games while another not-so-friendly-email was sent to the owner inquiring again about traps.

That night after everyone had calmed down, Amy and I were drifting off to sleep in our bunk beds when we heard a scream from the bedroom followed by the sound of a door opening and someone fleeing the room. Apparently while reading in bed, Mom saw the mouse run underneath the bed and crawl into the register.  So we all spent the next 20 minutes laying in bed listening to the sound of tape ripping as Dad duct-taped the register closed. Every time we thought that must be the end, another piece of tape was put on the register. They were not taking any chances of the mouse crawling back into the room. Amy and I started to feel bad for the little mouse stuck in the register starving away from its mouse family and friends. Dad, on the other hand, felt no such sympathy as the next morning when the traps arrived he was quick to set them up with cheese and peanut butter and was determined to catch the mice.

All in all, it was quite the distraction from me focusing and over-thinking about the transplant that night. Of course I over-thought about it the next night and pretty much every night since but that one mouse night I was able to catch a break.

We did end up catching two mice by the end of the week so this week's cottage dwellers have us to thank for their relaxing mouse-free nights.

Where do the lungs come from?

I feel like there are a lot of misconceptions and questions about where the lungs come from for a lung transplant so I thought I would do another Q & A to help clear things up.

Q: Where do the lungs come from?

A: Dead people (medically known as cadavers) who signed their donor cards. When someone dies, their lungs are 'harvested' and used for the transplant.

Q: I thought they could do lobe transplants from living donors?

A: They can but that is no longer a recommended practice for people with CF as the donor lobe quickly gets infected by the crap in the original lungs rendering it ineffective.

Q: So you just have to wait for someone to die?
 

A: Yes, but they have to die in a certain way so their lungs are not ruined. Getting hit by a bus or drowning does not create good donor lungs. Death by an aneurism, stroke, or heart attack are all good options.

Q: Old people die all the time, couldn't you take one of their lungs?

A: No, their lungs are as aged as they are and are not a very good option for someone like me.

Q: So who needs to die?

A: A non-smoker who is my blood type and body size with no other diseases and who has signed their donor card.

Q: Where are you on the lung transplant list?

A: They don't give you a number like '129 of 145' but they did tell me that right now I would be considered 'low priority'. To my understanding, low priority means that they will wait for a perfect set of lungs before doing a transplant to give me the best chance of avoiding rejection (Rejection being when the body does not accept the new organ and attacks it like it would a cold or the flu. Hence the butt-load of anti-rejection meds everyone is on post-transplant.) If I were considered high priority, that would mean that they would give me a set that would be less than ideal because I would die for sure without them.

Q: How long do you think that will take?

A: It varies, the average is 8 months to a year but some people wait for years. Being low-priority probably means I will have to wait a bit longer as the doctors won't want to rush the surgery.

Q: Will you know the donor or their family?

A: Not intentionally, the hospital works very hard to make sure the two families never meet.

Q: Why do you have to wait in Toronto? People die in the Maritimes too, can you get their lungs if you are in Toronto?

A: Unfortunately, the Maritimes don't have a lung transplant clinic so there is no option of having it done here. There are only 5 clinics in Canada and Toronto is the closest English option. I was told the 'harvest team' (the people who remove the organs from the dead person) have 8 hours from when the lung is 'harvested' to the actual transplant surgery to keep the lungs viable so getting one from the Maritimes to Toronto could be feasible if the timing works.

Q: So you will be in Toronto waiting for someone to die?

A: Yup thats about it.

Q: Doesn’t that freak you out?

A: Not really, A) I don’t know the person and B) I am not responsible for their death

Any questions I missed? Ask away!

Writing a power of attorney

One thing that the social worker wanted me to get arranged was my Power of Attorney (POA) in case the transplant is not successful. However, I have been putting it off as it is not pleasant to have to imagine and talk about my eventual demise. 

For those not in the medical field, a POA is a form that states that someone else can make decisions on your behalf on the off chance that something happens to you. So medically, that means they to make the horrible decision to end or not start life support or what kind of life support. If nothing is put in writing than the person has to blindly make decisions on what the person would have wanted. It helps to write out specifics to try to minimize their guilt and decision making.

Now that I am going to be on the transplant list (or 'listed' as they call it) in October, I guess I better stop procrastinating from writing one. The social worker told me that legally because my partner and I have lived together for more than a year, he would be considered my POA. I feel that my family knows what I would want but after working at a nursing home and hospital, I have heard a lot of stories about families brawling over the decisions I guess it is good to put it in writing on the off chance that my family tries to sue my partner for the right or something equally crazy. I always thought that a lawyer had to write up the document but the social worker told me just to write something confirming that my partner will be my POA. I don't think she meant a blog post so I will actually write something down on real paper. 

I didn't know what to write so I did what I always do when I am unsure, I googled 'How to write a POA'. The Internet is so helpful sometimes. The consensus I read was that for a medical POA, it is important to specify which type of end of life care you do or do not want to be on. It is not enough to say 'if I am not coming back to have a decent quality of life than do not prolong my death'. There are many different types of “DNR (Do not Ressistitate)”. It is not enough to say that you do not want treatment in case you have lung failure but it is important to specify which type of treatment.

So my partner and I had the uncomfortable conversation about how he gets decide to take out my ventilator and feeding tube if I am unresponsive but that if I get something like a UTI that is more acute and treatable to go ahead with treatment. I'm pretty sure I covered everything but it is all very confusing. My partner seems to be comfortable with making the decisions but it is much easier to hypothesize about death when I am feeling ok. It is not surprising that people have a tough time when trying to make medical end of life decisions for another person and even worse when other family members make them feel guilty or second guess their decision. 

So I have my form and hopefully it does not have to come out for a long time. I am comfortable with my decision of not wanting to live on a ventilator or respirator for a significant period of time. Of course I will have to be on one post-transplant due to my body getting use to my new lungs but if it isn't going to work, I don't want it to turn chronic. I want to have a good quality of life and be able to do things for myself. However, if I get something acute like the chicken pox or a UTI, I would like that to be treated because dying from the chicken pox* would be incredibly lame.

*I chose chicken pox because I thought no one died from chicken pox anymore. However, I looked into it and it kills about 100 Americans annually. Who knew! 

So much to do

I am back! We are home after two weeks traveling around spending time with friends and family so I hope to be back to regular updates.

The fact that I am moving to Toronto has actually sunk in since I got the call last week.  I've gone through a slew of emotions; scared, angry, sad, nervous, optimistic, frustrated, resentful, anxious, hopeful, determined, and more that I can't really define. All of which I am sure I will fluctuate through for the next several months (or year). Whoever came up with the '5 stages of grief/acceptance' where you move through emotion in a linear pathway should be fired. Instead it should be the '50 emotions of grief/acceptance' that is instead a web of mass chaos. Even though that probably wouldn't go over very well with the first year psych students in exams, I think it would be much more realistic. Or maybe that means I am still in the 'anger' stage. At this particular moment, I am just content that I finally heard something and that I can start planning the next few months of my life.

However, now that I am home, I am a bit overwhelmed with the amount of stuff I have to do before Oct. Moving is stressful and not much fun no matter the circumstances and this seems like a much more stressful move than my last one. We have to find an apartment that looks good, get someone from TO to look at it, try to arrange the lease, get boxes from somewhere, sort and pack our stuff into Toronto and 'Stay Here' piles,  move all our furniture and big stuff to our parents or friends, arrange mail forwarding, confirm funding with the NS health department, contact HR from work,... Ahhh!

*Deep breath*

Logically I know I have 6 weeks to do everything but I feel like I need to start packing and sorting stuff asap. My body is protesting and telling me I should relax for a few days and catch up on my sleep instead as I spent all last week kayaking, swimming, and cycling, and could use a few days relaxing. I do handle stress better when I am rested so I think right now I will try to shut off my mind and spend the evening watching Gordon Ramsey yell at random people. 

News!

I have been accepted for a lung transplant.

So I guess I'm moving to Toronto.

I'm feeling incredibly overwhelmed but relieved that I can finally start planning things. The transplant coordinator asked if I was 'ready'. I said “I guess...”. I didn't really know what to say. I am ready for something to be happening but I don't think I am ready for an actual surgery. I am ready to feel better and would like to climb a flight of steps without getting short of breath.

I am still having a really hard time visualizing a positive outcome from the transplant. I know that I should be thinking about all the positive outcomes of a successful transplant but every time I think about it, all I think is that I have a pretty significant chance of dying during or after the surgery. Does that mean I'm not really ready? I'm not sure. Right now, I just have a mental block where I can't picture anything beyond a transplant. I guess because I've always known that I will most likely be getting a transplant when my lungs deteriorated, I always equated that to the end of life. I'm still going ahead with everything because I think it is the best option for me at this time.

So for logistics:

The transplant coordinator who called me said that they would like me there as soon as possible meaning October or November, definitely before Christmas. We are going to aim for October 1^st as long as we can get everything arranged ahead of time. We will be giving up our apartment in Springhill and either move our stuff to Toronto or back to my parents place.

We can live within a 2 ½ hour radius from the Toronto General Hospital but the team really pushes for people to get an apartment downtown close to the hospital. They are obviously the most expensive apartments but hopefully we can find something within our range that does not have bedbugs or mice or cockroaches. We are planning right now to take our car up with us so we will have it to go on little excursions within our time limit. However, parking is super expensive so we may just go without.

When I get to Toronto, I will have a meeting with the main surgeon and team, and then I will officially be on the list. While I wait for lungs, I will be going to physiotherapy three times a week at the Toronto General Hospital, have monthly meetings with the specialists, and having regular check-ups with the CF team at St. Micheals Hospital. I will hopefully also be eating at a lot of delicious restaurants and going to fabulous shows.

Right now, I am still in PEI at the cottage so I can't start planning anything until I get back home with non-3G internet. I am going to spend the rest of the week swimming and kayaking and trying not to worry about the future

Be back in two weeks!

My partner and I are off for a week to visit his family at their cabin and then a week with my family at a cottage in PEI. I won't have Internet at the cabin or cottage so I should let you know that I will most likely not be posting anything for the next 2 weeks unless the weather is bad and we end up spending a day at Tims using their Internet.

I was told in Toronto that I would hear from them in 3-4 weeks. Four weeks from early July would be next week and I imagine with summer vacations everything is probably running a little behind. If I hear anything from them, I will be sure to update everyone. Even if I get the call right now, on Friday the doctor in Halifax said that most people take a month or two to get everything organized before they move so I won't be moving anytime before late September. Hopefully by then Ontario will be a bit less hot and sticky.  

Well, I'm off lounge by a lake/beach and maybe do a little kayaking and cycling with oxygen in tow. 

See you in two weeks! 

Still no news.

Yesterday I had one of my regular check-ups with the Halifax CF team. They have not heard anything from the transplant team in Toronto so I have no new information in that regard. So I continue to wait.
My doctor was incredibly furious that the person with long-term disability had told me that people use their benefits as a way to try to scam the system. She said she will be contacting them to tell them that I am not trying to scam the system. I appreciate that she is a strong patient advocate but I don't think it will make any difference when it comes to me getting my LTD. People stand very strongly behind any 'policy' and do not like to make exceptions even - or maybe especially - when doctors are yelling at them.

I also found out that I don't have to keep a residence in NS if I have to move to Toronto. This is excellent news as it means I won't have to pay for 2 apartments or pay for a mailbox in Springhill while living in Toronto.

The third part of the visit that was amusing/worrying was that about a month ago I noticed on my Vitamin D bottle that it said I was suppose to be taking four 1000iu pills. I had always been taking one and hadn't heard anything from any of the medical team about the switch so I ignored the label and kept taking one. I asked the dietician about the Vit D during my appointment and she had no idea who or why the change had been made. She went back to check my chart but couldn't find anything that was charted about an increase dosage. Its not a big deal but it just goes to show that you always have to be careful about medical errors. If it had been actual medication or if I didn't have a blatant suspicion and disregard for any medical change that has not been explained to me, it could have been something much more serious.

Garden Update!

Happy August! My 'garden' is growing really well. I've hidden a few pics in some of the last few posts but I thought I would add put more all at once.

Hopefully this baby melon won't rot off like the other ones.

Beans will be ready soon! I thought I planted yellow beans but they are looking awfully green to me.

Tomatoes!

First hot peppers! Except they aren't hot. I think I picked them too early, I have no patience.

First ripe sunberries. They do not taste like blueberries. They are weird. 

Peanuts greens are growing well, hopefully just as well underneath.

More sunberries on the way. Not as excited having now tasted them.

Lets pretend I did something to make the flowers look better.

The 'garden'! The neighbours must think I'm nuts.