Christmas 2007 at St. Mike's

Here we are - waiting for 'the call'! It's Christmas Eve and we're in Toronto away from friends and family. Not really the Christmas we had envisioned. Needless to say, we're trying to make the best of it - after all, this is what we HAVE to do right now, and there's always be next Christmas and thoes after that!

The staff at St. Michael's Hospital are great - they even brought us patients some gifts! And speaking of gifts, my co-workers have gone above and beyond - sending both myself and Darren and box full of surprises!! THANK YOU SO MUCH! We can't wait to open them tomorrow morning!

Our transplant journey begins ...

Well, not the news I had expected - but then again, yes it is. After 30 years of living with CF, the time has come - double lung transplant. On Saturday, December 8, 2007 Darren and I are headed off to Toronto, ON to await my "gift". We're hoping that this is not going to be a long stay away from home - but of course, this isn't something that you can control - as much as we would like to.

I'll have to be medically air lifted to Toronto. Darren isn't able to come on-board with me, so that's going to be interesting! Upon arriving in Toronto, I'll be admitted to St. Michael's Hospital under the care of Dr. Tullis (CF Program Director) and her team. St. Mike's houses the largest adult CF Clinic in North America - so I'm certain Ill in the best hands! Depending on how my lungs progress, I may have to be hospitalized until the transplant - that's something that Dr. Tullis will have to determine.  Once I do receive 'the call', I'll be transferred to Toronto General Hospital and admitted into the Multi Organ Transplant Program. This is where the surgery will take place - as will recovery and rehab.

It's all going to be quite an experience to say the least. In one sense I am so grateful that I have this opportunity and that I am 'well enough' to have the surgery done. On the other hand, this IS major surgery and not something to take lightly.

I'm excited ... I'm scared ... I'm relieved ... it's time to do this!

Living with Cystic Fibrosis ...

I guess to start I'll give a little bit of a background of my life and living with CF and how I ended up here ...

After suffering from pneumonia and lack of weight gain, I was diagnosed at the age of 3 years with Cystic Fibrosis. I remember my mother telling me the story of how she came to get me referred for a 'sweat test' ... first of all, you have to realize that I come from a very rural community in NL, and cystic fibrosis was not something common - if heard of at all! Secondly, you have to understand rural physicians, and in particular my physician at they time - typical Newfoundland humor!

At the time my mother was working for this particular physician (we'll call him Dr. O), and being concerned about my weight and constant 'flu', she questioned him about different things - nothing seemed to pan out. After seeing the ad for the Canadian Cystic Fibrosis Foundation (CCFF) describing CF and its symptoms - in particular the salty taste of the skin - she brought her thoughts to him. I'll never forget what she told me he said to her - "For Jesus sake Shirley, what else are you going to come up with? She doesn't have CF! But to ease your mind I'll send her to the Janeway to see the specialist." Like I said, you had to know Dr. O.

On February 8, 1980 (my grandmother's birthday) my mother and father took me to the specialist. After having the 'sweat test' they discovered that I did indeed have CF! I spent some time at the Janeway Child Health Centre and was sent home with the regular routine of meds and chest physio therapy. When my mother returned to work, Dr. O he caller her in his office, apologized for being so blunt, and told her he was just as shocked as she was about the diagnosis!

Luckily, due to my parent's hard work and dedication - making sure I took my meds, doing my chest physio 3 times a day, and letting me be 'a normal kid' - I haven't had too many set backs. Up until 2005, I had only been hospitalized 3 times (including when I was diagnosed)!

As transplant is pretty much a given for those with CF, as my lung function began to decline, I was sent to London, ON in 1998 for my first double lung transplant assessment. At that time, things were 'too stable' and I was 'too well' to have the surgery. From 1998 to 2005 I lived with a low lung function of 30% - but I didn't have too much trouble doing daily activities. I continued to work full time and be active. Oh, I should mention that in 2000 I met the love of my life - Darren! How could I forget him - LOL! We met in May 2000, were engaged that Christmas, got married in July 2001, and have been together (through thick and thin) ever since! To be honest, I don't know how he stays with me - LOL!

In July 2005 while at work, I felt really funny and couldn't breath all that well. Myself and my co-workers thought that I may be having some type of airway reaction to something in the building - so we headed off to the local hospital. After an r-ray we discovered that I was suffering from a partial pneumothorax (collapsed lung)! A chest tube and 5 day hospital stay later, I was back to my old self! Because of this sudden collapse, my CF doc thought that it would be a good time for me to go for another transplant assessment - so in September 2005 Darren and I headed off to Toronto, ON to meet the transplant team and Dr. Hutcheon. Because of the collapse, I wasn't able to fly, so we drove to Nova Scotia and took the train from there - what an experience - and not one I enjoyed at the time! Once again, following the assessment tests it was determined that it was still 'too well' to have to surgery. I remember well though, Dr. Hutcheon did say that based on my lung function, tests, etc. that I should be looking at transplant in about 2 years - little did we know he was right on the money!!

In January 2006 I received the biggest shock of my life (to that point)! I got a call from my Gynecologist asking me to come to the office ASAP! To make a long story short, on January 23, 2006 I was diagnosed with cervical cancer! WHAT??!! Yup, cervical cancer! I was referred to the Dr. H. Bliss Murphy Cancer Centre. It was there I met Dr. Dawson and Dr. Tompkins. Following 5 weeks of radiation, 3 rounds of chemo, and 60 hours of internal radiation, it was determined that the treatment was a success! As of September 2007 I was still cancer free!!

2006 seemed to be our worst year to date. We had the lowest of the lows and some of the highest of the highs! Following the cancer episode, Darren and I went house hunting and we lucky enough to find our dream house in Carbonear - thanks to a great friend and her family! In September 2006 we closed the deal and began moving in on October 4, 2006. As I mentioned before, I thought that the cancer diagnosis was my biggest shock - oh boy, was I wrong! This day had to be the lowest of the low for us! After spending the entire day transporting out things from Western Bay to Carbonear, our families came to help us unpack and straighten things away. Right in the middle of doing this, I stopped to hear my mother making a snoring noise. I turned to see her gasping for air. Thinking that she was having another diabetic reaction (as she was prone to these), I rushed over to see if that was indeed what was going on. When I got to her I knew that wasn't the case and called for an ambulance immediately. By the time I got off the phone she wasn't breathing and I just knew!! She was gone! The ambulance came, transported her to the local hospital, and she was pronounced brain dead from a massive heart attack. They waited 24 hours and made the official call - she was pronounced dead on October 6, 2006.

The next 6 months are really a blur - but with the stress and strain of mom's death and caring for Dad, things started to take a tole on me. I really don't think that I had the chance to recover from the cancer treatments and my weight was very low. Come April 2007, I was really feeling quite sick but figured to myself that it was depression. Well, was I wrong (to an extent)! On April 23, I was really feeling sick, called my father and "other mother" Judy to come over. When they arrived, they called the ambulance for me as I couldn't breath. I was admitted for 3 weeks and finally sent home on oxygen!

A month or so after getting home I was able to reduce the amount of oxygen that I was using and only had it during the night time and when doing exercise. I thought that I was getting better! This continued and in November 2007 I was starting to feel "icky" again. I called my CF doctor to get some IV antibiotics. She advised me to come to the hospital and get a good "tune-up" - I agreed (which is VERY strange for me)!

After spending a few weeks in hospital with things not getting any better, I knew it was time. I spoke to Darren about transplant long before Dr. Noseworthy mentioned it to me. Darren and I agreed that I would go home, straighten things out and head off to Toronto after Christmas (somewhere around February 2008). This was not to be the case!

A few calls and faxes to St. Mike's Hospital in Toronto and it was set it stone - I was to be transferred ASAP! All they were waiting for was a bed! We were a bit devastated as we would be spending Christmas away from friends and family - but in thinking about it, what would be better?!?! Missing this Christmas to have a chance at many more, or missing them all ?!?! We knew the answer to that one!

The rest of the story and a new lease on life begins here ... :D!