Monday, 1 July 2013

Q & A: Visit to Toronto

A lot of people have been asking me about my visit to Toronto next week so I thought I would set everything straight the best I can with a Q & A:

Q: Why are you going to Toronto?

A: I am going to do my initial assessment with the transplant team at the Toronto General Hospital and the St. Micheals Hospital in Toronto  to see if I qualify for a lung transplant. 

Q: What are you doing when you are there?

A: Specifically: blood work, endurance tests, stomach ultrasound, meetings with team to discuss my feelings, xrays, and a slew of other tests that involve being injected with radioactive dyes and put under cancer causing machines. 

Q: I thought you already did all of those tests. Isn't that what you have been doing since being off work in Feb?

A: Well yes, but they have to make sure there are no surprises. 

Q: Who is paying for the trip?

A: Thankfully, because I am a NS resident, NS will cover the return flight and accommodations (up to a certain amount, no Hilton for me) for myself and a 'support person'. Everything else is out of pocket. This is significantly better then NB which pays for nothing (Hey NB, if you supported your residents then maybe we would stay!)

Q: Is your partner going with you?

A: Yes 

Q: So after this, you are definitely on the transplant list?

A: No, there is no way of knowing whether I will be accepted after these tests. They will let me know 3-4 weeks after the visit.

Q: What happens if you are accepted?

A: Then I have to move to within a 2 hour commute from the Toronto General Hospital  and wait for someone my size and blood-type to die in an organ-saving way (sign those donor cards people!).

Q: Can't they just do that here? Why do you have to move to Toronto?

A: Canada has 5 places where they do lung transplants and rehabilitation and the Maritimes is not one of them. (Montreal, Toronto, Edmonton, Winnipeg, and Vancouver)

Q: How long do you have to live in Toronto?

A: It is hard to say, most people are on the list for 8 months to a year before they are accepted. After transplant, there is guaranteed 3-4 months of intense rehabilitation before you can return home. Best case scenario: A year and half. Worst case: People can spend years in Toronto post-surgery trying to have their new lungs stabilize. 

Q: OK, best case scenario, home in a year and half. Great! Then you don't have CF anymore right?

A: Well yes, my lungs would no longer have the CF gene but the rest of me still would. I would have to continue taking my digestive enzymes and vitamins because they aren't doing gene therapies yet. However, I would be on a host of new transplant medications which have their own crazy side-effects and problems.

Q: What are the chances for a successful transplant?

A: The numbers I have been told are: 90% survival rate immediately post-surgery; 80% survival rate for the first year; 50% survival rate for the first 5 years; and 40% for the first 10 years.
Q: Gah! How do they know if you will be a good candidate?

A: There is no way of really knowing. Bad candidates are people who are: overweight or underweight, smokers, those with cepacia, and the elderly. Other than that, there was nothing anyone could tell me that would be helpful in knowing if a transplant would be successful. 

Q: Nervous?

A: Nervous and scared and terrified and any other emotion you can imagine. I'm also thankful that something is actually happening (waiting sucks!) and that I'll soon know for certain whether I will be accepted for transplant.

If you want to read more fun facts go to the CF Foundation website where they have their own very wordy Q&A. 

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