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.