Today I woke up with chills and sweats again (unpleasant) but my body seemed to fight the fever off by itself--telling me this new antibiotic, Vancomycin, is getting the job done. I am now medically stable enough to go home, exactly two weeks after my transplant (amazing what the body can do, eh?) but will be staying here to finish my course(s) of antibiotics since home care will not work with 3 antibiotics (Meropenum, Ceftazidime, and Vancomycin). I'm basically connected to this pole all the time, so until that goes, I stay here!

I started some light leg and arm weights today and will be heading back to the treadmill room on Friday. I can't wait to see what these babies are capable of! However, since I still have an infection, I don't expect I'll see their full potential for a while. Also, since my brain still thinks I have CF lungs, I have to constantly remind myself to take deeper breaths-- it doesn't come as 'naturally' as one would assume.

Tomorrow I may also have every other staple removed from my incision sight... I wonder how many there are?

Let's fly out of here!

May 14, 2011

Next week will bring me to two milestones: I will have been out of the hospital for a month and officially listed for a month!

I haven't really had much energy to blog since I've started my pre-transplant exercise program at Toronto General. I'm required to go to the hospital three times a week to condition my body for such a huge, dramatic, surgery and it's no walk in the park: 40 minutes of cardio (20 minutes on the bicycle and 20 minutes on the treadmill), weightlifting, and stretching. I actually enjoy the challenge most days--it's nice to firm up after sitting in a hospital bed for 8 weeks--but this week has been a little tougher for whatever reason, my lungs are just not having it... did I mention I require 1-2 hr naps after?

Backtracking: February 25th-March 8th

I finally got a bed on Friday (the 25th) and was started on my dream-team med combo (Meropenum and Chloramphenicol), the very combo that saved my lungs from being permantly fired in 2009. Within 24 hours I felt great, my voice had returned in full-strength and my shortness of breath had lessened... I hopped on the exercise bike daily and didn't require oxygen--my levels, oddly, were fine. However, we later did decide that 1 L of oxygen would be helpful, since my heart rate shot up to 160, and it was very possible my heart was overcompensating for my weak lungs (thank you overachieving heart, remind me to reward you later by avoiding all trans fats). My main problem, upon this admission, was the inability to clear mucus (which, let's face it, is a lingering issue), all the physio in the world cannot get the stuff moving, which makes it difficult to clear infection despite strong antibiotics, if you can't cough it out... then you have a problem.

This is a couple minutes late for Media Monday but I had the day "off" to enjoy a nice little holiday we call Labour Day.

Talk about Labour, this girl Jessica is living with a lung function of 11% which makes tasks like getting dressed in the morning or putting on socks feel like the equivalent of running a marathon. Despite this, Jessica is participating in a 5K to raise awareness for organ donation in the UK (more specifically, a foundation called Live Life Then Give Life). She has been waiting for a new set of lungs for 4 years (and we thought our waiting list was long!)

Read all about her here.

Also check out Ronnie's blog at Run Sickboy Run where I discovered this inspirational story along with many others (including his own).

As my own--muchly overshadowed--sidenote, I went for my first kayak of the year today (I know, a little late... but it was chilly this year and I can't/refuse to drive the pickup truck). It felt great and I didn't get tired, even after an hour of kayaking in the rough waters of Georgian Bay I honestly felt like I could go all day. Yay stamina!

Tonight I decided to sway from my regular holiday routine of eating, shopping and otherwise acting like a poster child for half of the seven deadly sins, choosing instead to hop on the treadmill and sweat like a pig.

It is important for everyone to exercise, but when you have infection-hungry lungs it is even more important. You would think that a transplant assessment hanging over my head would be motivation enough to workout daily, but as of late 1-2 times a week seems to be my max. If the amount of calories I consumed reflected in my BMI I could qualify for Biggest Loser and get my ass kicked by angry/hungry trainers—but sadly this is not the case and I will have to kick my own butt into shape. I’m not nearly as mean.

In order to do this I will have to actually set aside time to workout, which sounds simple enough but there are always better things to do like: sleep, shop, watch True Blood, search for future jobs, read texts from last night—you know the drill. I kept saying it would be easier to exercise more when I was done work; well, I’ve been done for two weeks now… We all know the “I have no time because of work” line is BS anyway. Who was I kidding?

Introducing my fitness goals for this month:

• Workout 3 times a week (30 mins cardio plus weight baring)
• 15 minutes at 4 mph on the treadmill (I currently do 10 minutes)

After an amazing sleep-in and huge breakfast, we headed over to TGH for our appointment with the anesthesiologist, Dr. Karen McRae at noon. Let me just say, fascinating appointment. She described absolutely everything that will happen from how they retrieve donor organs to how they do the operation and threw in tidbits of interesting information. For instance, did you know that hearing is the most difficult sense to block once you are put to sleep? This is why you will hear rare accounts of people “remembering” their surgery—it is because they overheard something during their surgery. In order to avoid this type of memory, tx patients are given “amnesia” drugs after—erasing your memory, though it would have been cooler if they did it Men In Black flashy pen styles.

After this I prepared mentally for the dreaded MUGA scan, which my Cystic Sista, HArmstrong (I’ll just refer to her as H), had already warned me about. The MUGA scan determines how well your heart can handle stress, which is obviously very important for such a huge operation. H was not kidding, the test was hard! The first part was deceivingly easy, all I had to do was lie there while they injected radioactive tracer into an IV in my arm. They took pictures with a giant camera for about 30 minutes--the technician made a corny joke about them treating me like a pawn when I am a Bishop. Then came the second part of the test, which was designed by the devil. While lying down (and with the giant camera on top of me) I had to pedal (up to 40 on a gage… she originally said 50, but I couldn’t make it there) for as long as I could. Well, ladies and gents, pathetically enough I only made it for about one minute. I wasn’t pouring with sweat or anything, but I was soooo out of breath and I felt my heart thumping in my ears (also they told me to stay as still as possible, which meant I had to grip the side of the table because my body weight alone is not enough to keep the pedals from pushing me up…).

So I think the exercise portion of the MUGA succeeded at making me feel like a failure, as exercise tests usually do. Maybe I would have done better if I had my oxygen (for some reason they couldn’t supply it for me there…) or maybe not. In any case I am glad that is over and done with! I had a massive throbbing headache right after the test and for the remainder of the afternoon.

Before I left TGH I did one last blood test as a token of my appreciation (only three vials this time) to check PRA levels in my blood. This just checks for your immunity to other people (and I think other things too, but I can’t remember at this point.)

Back home tonight and I have Thursday off! All the ‘hard’ tests are officially over.

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.