Thursday February 23, 2012

Three months ago, today, I received a call at 1:13 in the morning that I could never in my wildest dreams imagine would come: the call to start my new life.


Getting the Call
Correction, at 1:13 am I heard the sound of my voicemail alert -- instantly I knew something was off-kilter. Having climbed in bed two hours previous, it was quite unbelievable that this barely audible 'beep' woke me up from a dead sleep (and those who know me well, know that I can sleep through anything -- including various pumps alerting in the night and even fire alarms). The fact that my phone had no service, and usually would not alert me of a voicemail until I returned to a service area, was even more miraculous. So at 1:13 in the morning, my heavy eyelids opened, I momentarily considered waiting until the morning to check my messages, but my gut highly objected to this procrastination. For the next 10 minutes I attempted to check my voicemail several times (service kept cutting out) then after hearing the voice on the other end say "This is Toronto General, we're trying to reach Lindsay Bishop, please page this number when you get this message," I took another few minutes to scramble down the rushed number, confuse myself thoroughly while calling back, then finally connected to the Charge Nurse who told me what I expected, "we have lungs for you and you are first choice." I responded with "Are you kidding?" and of course she wasn't, TGH doesn't prank call you, but I felt compelled to verify that for some reason. After writing her instructions down (where to go, nothing to eat or drink, bring list of medications, get there within a reasonable amount of time, etc.) and hanging up the phone, I took a moment to think of NOT physically vomiting, then proceeding to mentally vomit a concoction of dead fear, pure excitement, anticipation, relief, and reserved optimism. After all that, I tapped on the door to my Dad's room (he'd already heard me on the phone and knew what I was about to say), he then phoned my Mom who was in Brampton, I phoned my cystic sister Hattie, texted a few people, updated FB, and packed in about 10 minutes -- hacking the entire time.

You know the week is starting out right when your oxygen -- your lifeline for the past few years and especially the past few months -- is carted away. And there you stand, breathing on your own, without aid, without hesitation and without struggle.

Bon voyage 02 tanks!

I have now graduated to clinic every two weeks, since I seem to be pretty stable. I still go to the hospital three times a week for exercise, weekly bloodwork and pfts -- but hey, having a clinic day off is still a bonus!

Last week I had my second Bronchoscopy to check for rejection or infection. So far everything looks good and if the rest of the results come back just as stellar, I will have my PICC line removed by next week. I have not been PICC-free since September, so I welcome the break.

Otherwise, not much to report. Exercise has been going well, I've even started jogging for short 1-minute spurts (pretty sure my body forgets what 'running' is)... and in between I've been supplementing cardio sessions with "Just Dance".

Before I sign off this post, I will share the most important thing of all (besides feeling great!): My pfts are now 66%! Never seen that number and it will only get better. Very exciting.

I've been procrastinating about writing this blog post because I cannot wrap my head around what a crazy year it has been, wrapping it all up in a pretty little post just seems like such a daunting task, but I'll try anyway!


January 2011 started out much different. Friends and I gathered in Nathan Philips Square on a relatively mild winter night and counted down the final moments of 2010. I remember being determined to walk all over the city, I remember not being able to carry my bag up the TTC stairs because I started seeing white spots, but--mostly-- I remember having fun despite the burdens my body was trying to impose.

Later that month, to celebrate the completion of school (for both my sister and I) we took a family trip to Barbados, I fell ill for nearly the entire trip, but was still able to snorkle with the sea turtles, take a submarine ride, and enjoy long days at the beach. The adrenaline must have kept me going through that trip (and determination to enjoy myself) because on the plane ride back I was struggling to breath (even on 3 L of oxygen) and by the time we landed I could barely walk off the plane. I was started on oral antibiotics when I returned and was able to celebrate my birthday with great friends in Collingwood. Again, determination prevailed only temporarily, and the next day I felt my oxygen levels dropping, heart pounding, and blood oozed from my diseased lungs -- I knew it was time to get more help.

January also brought me my foster dog, Penny, who I had applied for in the fall. She was timid and shy, but affectionate and wanting to please. She only walked on three legs because of a severe injury to one.

By February the fun was over. I was started on home IV and dear Penny went in for surgery to fix her broken hip joint. We both attempted to heal together. By the end of February I was admitted to St. Mikes because none of the med combos were working and my drug allergies prevented me from using those combos at home.

When I was out on a pass from the hospital on my Dad's birthday in March, I remember remarking "Wow, I was so sick before, I feel SO good now, I can't get over it." We really thought we had found the right medication combo, my lung function was back up to 28% and I was to be discharged the next day, but fate had other plans. Within 24 hours my med combo started failing, I was getting more short of breath by the day, and my lung function dropped back down. I went from briskly walking around the city a few days earlier, to being short of breath just sitting in bed. I could not walk to the bathroom without looking like I'd run a marathon, I could not reach for items on my table, I could not do much (though I'd still force walks). I was put on oxygen 24/7, but was able to taper down to use for just walking. By the end of March I asked to be re-assessed for a lung transplant, the doctor's agreed it was the right time to consider listing.

On April 19th I met with the surgeon at Toronto General Hospital and signed the dotted line. I was officially listed for transplant as a status 1. On April 20th I was released from hospital after 8 weeks.

May was such a blur, with frequent appointments at St. Michael's Hospital accompanied by attending the physio program at Toronto General three times a week.

By June I was back on oral antibiotics for a month. I started struggling with the idea of transplant and thought I was 'too healthy' for it... by the end of the month I had changed my mind.

In July we started renting a condo close to Toronto General so that I could have a bit more of a life. It was getting challenging finding time for a life between the usual 4 hr treatments PLUS three times a week physio PLUS appointments at Toronto General and St. Mikes -- this probably saved my sanity for the summer. I started night French lessons to attempt to keep my brain alive... not sure how much I absorbed, but it was fun!

August brought our yearly fashion show CF for CF. This year I just designed the program and wasn't as involved, but it was nice to sit back and just enjoy the experience. It was also a nice excuse to wear my heels again (which I've been avoiding the past year because they make me short of breath) -- thankfully there were lots of places to sit!

By the time September hit, I knew I was done for, something changed when that fall air hit my lungs. I had been stubbornly avoiding using my oxygen for walking all summer long (instead opting for shorter walks and more frequent breaks), but now I had no option, I NEEDED it to function.

Still, I kept busy. My Dad, Sister and I planned my Mom's surprise 50th Birthday -- and yes she was surprised. A few days after I started oral antibiotics again after developing a 'weird breath' and at the insistence of my physiotherapist. Two weeks later I was started on IV antibiotics.

By October things were starting to go downhill again. I was admitted to St. Mikes to try a new drug combination since my current one was not working. During this admission the "Big Boss Doc" came into my room and said it would be a good idea to increase my status on the transplant list (status 2) -- and after digesting this information (that I saw coming) I agreed. On October 24th I was listed at status 2 the "urgent" list.

After over 5 weeks on IV antibiotics, and little improvement, I stopped IVs in November to give my body (and self) a 'break'. I slept A LOT. And tests showed my white blood cell count was climbing (though I felt ok) and my pfts dropped ever-so-slighty. The waiting game to restart IVs was on.

The night of November 22nd, I went to bed early. I had agreed to do a speech at U of T early the next morning about life on the transplant list -- as I closed my computer that night, after reviewing my talking points, I thought 'wouldn't it be funny if I got my call tonight?'

At 1:13 am I heard a 'beep' on my phone indicating I had a voice mail. I had no service, apparently, so my calls were going straight to voice mail. It was TGH saying they needed to get in touch with me ASAP -- I knew what that meant. I had a moment to mentally vomit nerves, then called back and heard the words "We believe we have lungs for you and you're first choice."

I thought it would be a false alarm, most people get those. But no, this was the real deal!

10 hours later I was on the OR table. I waited there for 2 hours, chatting with the OR nurses, then the surgeon (a man of few words) came in, clapped his hands together and said "OK let's go". I thought that was funny.

I took my last conscious breath with Lindsay lungs, savoured it, appreciated it, and stored it in my memory. I wanted to remember how they felt...

6.5 hours later I was breathing with new lungs. Over the next few weeks I would learn how to breath again, I'd fight infection that threatened to invade my new breathers, have my first blood transfusion, and eventually bust free from the hospital confines.

By December life slowly started to normalize -- a new normal. Suddenly my afternoons are not consumed by treatments, suddenly I no longer need 10 + hours of sleep, suddenly lung function tests are easy? I blew 57% my first lung function, by the end of December it was 62%. On December 31st I played "Just Dance" for Wii, and did not feel short of breath until the second or third song -- last January when I played that same game I had to 'chair dance'. In 2012 there will be no chair dancing.

Thank you donor for allowing me to dance again, for wrapping up this crazy year on a high-note, and for letting me realize the possibilities of 2012.

Merry Christmas from my lungs to yours.

Excuse the lazy eye, the photo shoot was a bit tiring!

Pictured: 26 of 53 staples removed. The remainder were removed before I left the hospital. Lower down are my 4 chest tube incisions, the sutures were removed last week.

So what's this? I bust out of the confines of the hospital and stop updating? Pretty much, yeah. As of Wednesday, December 14th I am a free woman! Free to sleep in my own bed, free to roam without an IV pole (for the first time in many, many months) and free to work these new lungs.

I must say, it's weird being home and not having to constantly adhere to a physio schedule (I still do nebs for the next three months, mind you). But already I notice I have so much free time. Of course, I'm still healing from major surgery and require lots of rest, but I know that time is there to spare. What a nice holiday gift!

Most of this week has consisted of my returning to the hospital for exercise (with my green card) and relaxing around the apartment. Since it's busy holiday season I'm avoiding all public places and probably will for the next three months when my immune system is lowest.

The best update of all? On Monday I had my very first PFT (lung function test) test and I blew 57% (1.63 L), a number that I haven't seen since I was a child! To give you an idea of where I was before transplant, my PFTs were .61 L, which is 21%. It's mind-boggling that I can now do a lung function test without hacking and seeing stars after. I also got to have a look of my recent chest xray compared to my before transplant xray and there's so much improvement in my back already (perhaps why I'm standing up straighter?) Also, a lot of the gas trapping and hyperinflation I had from my old lungs has virtually disappeared. Amazing how quick that happens!

Smiley is happy to be leaving!

Making a run for it

Mom carrying my bags home since I cannot lift anything heavier than 10 lbs for 3 months

I have been feeling good great since my blood transfusion on Friday-- now I've really been able to work these new lungs! In fact, I felt SO good today that I was able to go home for a few hours on a pass (and home is literally up the street for me, so it was completely feasible). It was nice to sit on my own couch, lay in my own bed and rummage through my own fridge-- it's really all the small comforts you miss, and quickly become luxuries when you've been separated from them.

The only thing missing was my foster dog Penny, who has been staying at Chateau McCarthy with my cousins and being spoiled to death. I honestly don't think she even misses us... she has her green ball, and that's all a determined little Jack Russell could really ask for?

A THANK YOU to all the blood donors out there too! I went to exercise yesterday and got through it, but it was very exhausting. I had to stop on the bike every 2 minutes because I was SO dizzy. I put this down to 'I'm only two weeks out of surgery' but my physiotherapist, knowing how driven I am, wrote a note in my chart and insisted I tell the doctors.

Turns out my hemoglobin has been in the 70-71 range for a few days and they were hoping it would climb up by itself (and with iron supplements), however with my symptoms they decided it was best I go ahead with a blood transfusion. I must admit, I was a little icked out by the thought of it at first, and was prepared to say 'nah, I'm good, I'll just sleep until my body makes enough red blood cells again'. But when the surgeon said it would make my lungs happier and speed up the healing process I couldn't refuse! I will do anything to keep these beautiful pink lungs happy!

Starting back to rehab tomorrow morning... duh duh duh!

I really hope it goes well, as I seem to be an expert in suffocating myself. Like I mentioned earlier, my brain still thinks it working with diseased lungs and that, couple with the tightness of the incision, make the act of breathing hard. My friend M described it well earlier when she said it's like jumping right on the bike without any training wheels first--so there's bound to be some tumbles! I guess I can forgive myself for not adjusting to my lovely new partnership so very quickly.

Meanwhile, I went for two walks today, had plenty of naps, and did some light weight lifting.

In a way I can't wait to show off my new 'look' tomorrow...
My lips are pink.
My skin has COLOUR.
My hands seem softer and light.
And my voice is so clear!

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!

Today we got to the bottom of things, literally. I had my very first Bronch around 12 pm that lasted about an hour (or so my mom says). The procedure was not nearly as scary as I thought it was going to be-- in fact, the most inconvenient part of the whole thing was fasting since midnight. Hungry Lindsay doesn't fair too well in public!

I was taken back down to the second floor where my transplant surgery took place almost two weeks ago. Then I was parked in the day unit, explained the procedure and transferred to the "freezing room". The room is ironically warm, but it's purpose is to deliver you all things 'freezy'. I gargled some solution to freeze the back of my throat (it supposedly it horrible, but I guess my tastebuds are still asleep because it wasn't all that bad), then I nebulized more freeze solution. After that, I said farewell to my Mom and was wheeled off to the procedure room.