I woke up a little groggy today, only got about 5 hours of broken sleep. I tried to be as quiet as possible as I did my mask at 6:30 (my mom, dad and sister were still sleeping in our hotel room). We headed over to TGH at 7:30 for an echocardiogram (echo), which is basically just an ultrasound of your heart. This will show how well my heart pumps blood and provides a closer look at how the valves function. It is a really easy test; all I do is lie there while the technician places a wand on my chest. He explained everything I was seeing and hearing on the monitor, so I was getting my education… even if I just pretended to understand some things…

Since I was in and out pretty fast, we went back to the hotel room to meet my sister and go out for breakfast. Our next appointment was with the Transplant Coordinator nurse, Michelle. She told us a lot of stuff that we had already researched and knew, but thankfully we had because there was A LOT of information. She gave me a huge blue book that tells you exactly what to expect pre-tx, during tx and post-tx. It is even broken down into an hour-by-hour basis. To date, I have only read about 5 pages—I need digestible chunks of info and some of it is hard to chew.

A Glimpse Into the Future

Michelle told us that 90% of tx patients experience at least one of two complications: rejection or infection. So you have to expect that you WILL get rejection and infection. Rejection, because you are introducing something foreign to your body. For instance, when you get a splinter your body wants to attack and destroy and get it out of you. So, in order to avoid this type of assault on your brand new sparkly lungs, tx patients are put on immunosuppressants (medications that lower the immune system and ‘trick’ your body into accepting your new tenants) for the rest of their lives. Of course, without a strong immune system you are open to the next complication: infection.

Anyway, those are two complications that are to be expected. Along with a host of other complications that are tag-a-longs. In response to these complications there is a long list of combative medications, which can also lead to more complications! Mind you, looking at the list of medications, I have already been on some of them including the most evil of them—prednisone, which I have been on for most of my life already. So who knows?

The message of the meeting was basically this: Transplant is a treatment NOT a cure. This is what makes it difficult for a lot of people deciding whether or not to go on the list. Essentially you are trading one set of familiar problems for another set of unfamiliar problems.

The Verdict on Living Donors

We also asked about the possibility of living donors. It has not been done at TGH yet and it seems to be discouraged—rightfully so, because it is a huge decision with questionable ethics. With a living donor donation a lobe is taken from two separate donors, which are then placed into the recipient. Those two lobes become the recipients two lungs. The donors have to be a certain height taller than the recipient, which makes me an ideal candidate because I am tiny (it is usually done on people who are smaller or children). However, the donors will lose a percentage of their lung function permanently and are at risk for complications like infection. While I would feel just fine with 2 lobes (normal lungs have 5 lobes) because my body is adjusted to crappy lung function, the donors would feel pretty horrible because they are accustomed to full lung function. Also, unlike the liver, the lungs do not regenerate and grow back.

Donors would also have to undergo more rigorous testing than me and I would have to have five potential candidates PLUS caregivers/support people for the donors (they would only pick two donors of the five) and me. SO doesn’t look like living donation will be an option for me.

Other things I've learned…

People with Cystic Fibrosis are not allowed to hang out after tx, even if both of them have had a tx.

For those of you who don’t know, people with CF are not allowed to hang out because we grow bugs in our lungs that can be harmful to each other. We constantly go through great lengths to avoid each other, which is especially hard when we are in the hospital or at clinic at the same time. I will probably expand on this later.

All-in-all very informative meeting.

Test One, Two...

I only had two more tests after this meeting. One was a CT scan of my chest and sinuses. Really simple, you just lie there (again) and the machine talks to you in a robotic demanding voice (breath in, hold, breath). This test was soooo much easier than it was in January. In January I was panicking about holding my breath long enough (it feels like it is about 10 seconds?) but this time I had no problem.

The last test was a six-minute walk, which is exactly how it sounds. A physiotherapist will time you as you walk and then record how much ground you were able to cover in six minutes. I did this test before when I went for my consultation in May, only this time I used my oxygen (3 L on pulse. Pulse means it gives me oxygen when I breath in, rather than a constant flow) and wore running shoes instead of heels. This time I actually broke my record (which was already pretty decent) by 34 metres! I can now cover 529 metres in 6 minutes, which is amazing! Woo! (I usually will not be walking that fast though… my fast-walking/sprinter friends can dream on...)

I was really tired after the tests today… so I napped for about an hour when I got back to our hotel room. We went out for another nice dinner at the distillery district (got lost for about 30 mins first, thanks E for your help!), then went to a pub and had sangria (I have a test tomorrow that says I can’t have any caffeine for 24 hrs before, so I replaced caffeine with alcohol). Tomorrow doesn’t start until 12, so I will get my sleep-in!

P.S. Thanks to my sister for coming today even though it was her big 2-0.