MERRY CHRISTMAS & HAPPY NEW YEAR!

Christmas has always been my favorite time of year ... one that myself and my family would enjoy to the fullest.  The past few years haven't been so great, but I still found it in my heart to enjoy this beautiful and magical time of year.  

For some time now I haven't been able to totally "get out" and enjoy myself during the holiday season.  I would attempt to visit friends or attend a scattered party, but it just didn't seem like fun ... mainly because of my health.  An just a little over 2 years ago my mother passed away.  I don't remember much of Christmas 2006 ... I'm sure we went through the motions, but as you can imagine, it wasn't a joyous occasion.  

A lot of things have changed in 2 years!  Just this time last year Darren and I were sitting in my hospital room at St. Mike's awaiting the arrival of the New Year.  Being away from friends and family wasn't at all fun, and ringing in the new year from a hospital bed wasn't one of the things on my to-do list ... but hey, things happen and we are sometimes forced to deal with them head on ...

Looking back just 1 year ago, I can honestly say that it was all worth it!  Although we didn't realize it at the time, our Christmas miracle was just around the corner!  

Being almost 1-year post transplant is something I didn't think would ever be a reality for me!  This holiday season has been extra special for myself and my family and one that I'll cherish for a lifetime!  Being able to spend time with family and friends, visit, travel, party ... all without stopping to worry about breathing!  It's just truly amazing!

We thank God everyday for this special miracle and gift of life!  We are truly blessed to have been so successful in my transplant journey ... although it is far from over!  We continue to pray for our new friends who are still waiting for "the call" and for those who are recovering ...

MERRY CHRISTMAS & HAPPY NEW YEAR!

9-Month Assessment (Nov 2008) - UPDATE!

Following a busy and eventful week in Toronto, Darren and I are back home again ... getting all ready for Christmas! All my tests came back great this time around ... still waiting on a couple more, but nothing too serious. My bronchscopy and biopsy both came back with NO infection or rejection!!

My next trip to Toronto will be for my 1 year assessment ... somewhere around February 22, 2009!

9-Month Assessment (Nov 2008)

Just a little update ... 

Darren and I are heading back to Toronto for my 9-month assessment ... and yes, time has gone by that quickly!

I'll be having the same routine testing that I had done during my 6-month assessment in September ... hopefully they won't have any surprises for me when we get there! There has been a big scare at St. Mike's Hospital and the Transplant Clinic ... with the "bad CF bug" B. Cepacia being found in some new patients. Unfortunately, I've been exposed to this bug ... but we'll have to wait for the testing during the bronch and biopsy to find out "what's what"! I'm not really sure what it means for me now that I've been transplanted ... so I'm sure there may indeed be a few surprises next week!

We're leaving on Saturday, Nov 15 and returning Friday, Nov 21 ... that's if everything goes as planned. We'll keep everyone posted on Facebook, via email and CarePages!

Wish us luck!

Today is the 2nd anniversary of my mother's death. I thought that things would start to get easier by now, but not so ... I miss her so much!

It's been almost 8 months since my double lung transplant and the only thing that I wish is that mom could be here to see me and see this wonderful new life that I've been given. I know that she's watching over me and making sure that I'm OK, but it's just not the same. I can't really celebrate with her - apart from in my heart - which right now isn't cutting it.

Truly believe that my transplant and current health would not be as positive as it has been if it were not for those loved ones that I've lost throughout the years ... Matthew, Nan Whalen, Pop Whalen, Nan Halfyard, and of course Mom. It is with their strength and guidance that I've become the person that I am now.

I'm not the kind of person to have regrets or wish for things to be better - I take life as it is and work with what I'm given ... but today, I do WISH that mom was here ... I LOVE YOU!

6-Month Assessment (Sept 2008)

Well, Darren and I are getting ready to head back to Toronto for the first time since we've been home. It's time for my 6-month assessment!! WOW, time really does fly!

Not sure what to expect ... but I did receive a package in the mail outlining my week of testing. Doesn't sound too horrible .. just some VERY long days! It's kind of exciting to be going back ... expceially to see some old transplant buddies ... and some who have been transplanted since we've come home! I'm hoping that my week isn't going to be so full that we can't do a little catching up.

I'm also finally participating in an Adult CF Committee meeting next weekend! It's been the first one that I've attended since 2005! WOW, what a way to celebrate ... I can't wait to see some old faces and meet the new members of the ACFC!

Well, keep everyone posted on Facebook, CarePages or email ...

Wish us luck!

Christmas in Carbonear

My best friend and her family vowed to me that we would celebrate Christmas when we returned home safe and sound - complete will all the trimmings - trees, turkey dinner, friends, family, etc.! Obviously they didn't disappoint!

Yesterday we celebrated Christmas in Carbonear! Surrounded by friends and family, we ate, chatted, opened gifts and just had a plain ol' great time! Thanks to Judy, Joanne, Darrell, and John - Christmas was just perfect!

HOME!

Well, we've finally made it home - and what a welcoming! We were surprised and delighted to see friends, family and aquaintances at the airport when we arrived! Not to mention the media! I was taken a little off guard having to "air" my story to CBC news just after getting off the plane, but what the hell - it was all worth it!

After leaving the airport we headed to Manuals to pick up our girlies - Molly and Bertha! To be honest, I think I enjoyed that the most - lol! I was wondering if they would have forgotten us - but nope - they knew exactly who we were and where they were going - HOME!

Upon arriving in Carbonear we headed to hospital parking lot to start a motorcade! We ended up at the Carbonear Civic Centre with more media opportunities from The Compass and KIXX FM and a warm welcoming from the Mayor!! All it all, it was a great day! After having a chat with some friends and family at the Centre, we headed to the in-laws for yet another media opportunity - this time NTV news! Thanks to Ed, Bill, and Sherry for great interviews!

Finally we headed home to our house - which I haven't been in since November 13, 2007! We unpacked the van and just relaxed for the evening! Finally we were HOME - after 6 long months!

Now all the fun starts ...

HOME COMING!

As of today, Friday, May 9, 2008 I've gotten the "all clear" to head home to NL!! Needless to say, Darren and I are super excited to finally get our lives back on track! We've booked our flight for Wednesday, May 14 and we're now counting down the days.

It's been one hell of a journey to say the least - but a very welcomed one! Without this life-saving "gift" I wouldn't have been able to enjoy my life let alone get to start it over! WOW! What a feeling - being able to get a second chance at life! Unbelievable!

We've been so blessed to have such supportive family and friends (new and old) - we wouldn't have been able to do it alone. It's been difficult living in Toronto on our own for the past 6 months, but knowing that we've had the support behind us got us through it! THANK YOU! In addition to those home and abroad - we also met some wonderful and life-long friends and fellow transplant recipients here in Toronto! We've been a support to each other!

This has been a life altering experience - and one that I'm so grateful for being able to enjoy! Yes, I did say enjoy! Although it's been a long and hard journey, it's been well worth it!

As you can see, I'm getting a little better at explaining this experience, but it's still difficult to put into words - I'm sure it will come over time! Just bear with me - LOL!

Well, its time to log off for the night - after all, we've got packing to do now - and it will probably take us until Wednesday to finish it (haha)!

I'll continue to update - as the fun has only begun ...

3 Months!!

The week has started, and it's a busy one:

Monday: PFTs, CT Scan, x-ray, fasting blood work, Esophageal PH Test, TX Clinic
Tuesday: Esophageal Motility Test, physio/rehab
Wednesday: Bronchoscopy
Thursday: Bone Mineral Density Test, physio/rehab
Friday: Methocholine Test, meeting with TX Coordinator

Today was the busiest of the days - but luckily it's almost over. I was a bit worried (well, A LOT worried) about the PH test as I have this 'fear' of things being shoved down my throat. Luckily the nurse that did the test talked me through the whole thing - and it really wasn't all that bad. A few gags in the beginning, but nothing serious.

The test consisted of two parts - the first being a test that checked for the strength of the muscles in the stomach. The tube she used for this one was a little irritating and made me gag - but like I said, nothing too serious. The second part of the test lasts 24 hours! Right now I'm here sitting with a friggin' tube up my nose measuring the PH/acid in my stomach. It's a bit gross as the tube irritates a little, but I'll be at the hospital bright and early to get it removed!! The tests needs to check to see if the acid in my stomach is coming up my esophagus - if it is, it can damage the new lungs!! We DON'T want that!

At clinic today I did get some GREAT news! I got my clearance to fly! We're trying to get flights, etc. straightened out for next Wednesday - the only determining factor will be the bronch/biopsy results this coming Wednesday! We're not anticipating any setbacks - but of course, you always need to be prepared for such things.

Well, it's time to figure out what we have to send home and what needs to come with us! Fun times ahead!

Can't wait to get home!

Going Home??

Time is drawing near! My 3 moth post-transplant assessment has been moved up from May 22 to May 5!! If all tests results come back OK, we're hoping that we'll be on our way home! Next week will be a busy one for sure. Monday, May 5 is the worst day with the most tests and appointments - after that, things will be a breeze! Oh, and I have my Transplant Clinic on that day too!

There are a few tests that I'm not looking forward to - well, actually there's just 2. I'm still not too fond of the bronchoscopy, but they usually give me good drugs and I don't remember most of it (LOL)! There's also the 24-hour PH test that tests the level of acid in your stomach. To do this they insert a tube up your nose and into your stomach. It's to be left there overnight - hence the 24 hour bit. I've never had anything like this done before, and I'm not looking forward to it! Unfortunately it's something that can't be looked over - after all, I don't need acid getting into these new lungs!!

I spoke with one of the doctors on Monday about a return home date, but she didn't want to give me any information until she has the results of the bronchoscopy on Wednesday (May 7). I've had 3 done so far and all have come back negative for infection and rejection - we're hoping that the same will be true for this one!

Going home will be a big change - but a welcomed one! Time for Darren and I to get back to "life" with our two babies! I'm sure the first few weeks will be a whirlwind of excitement then it will be back to work for us both! To be honest, I can't wait to get back into the 'swing of things' - both personal and work wise!

Great Strides 2008!

This year Darren and I decided that we wanted to go full force and take part in the annual CF Great Strides walk. Seeing that I have new lungs - and all due to the tremendous support shown to the Canadian Cystic Fibrosis Foundation (CCFF), its CF clinics, and transplant centres - this was my time to shine! 

Great Strides: Taking Steps to Cure Cystic Fibrosis is the CCFF's largest national fundraising event. Thousands of co-workers, friends and family come together each year as one commnity for one cause ... to help find a cure for CF!

This year's walk in St. John's, NL is taking place on May 28, 2008 at Pippy Park. Although we're still in Toronto and not expected home until the first week of June, we decided to start a 'virtual team' and go ahead and raise the much needed funds anyhow! We've invited friends and family to come on board - either by joining thoes at the walk on May 28 or joining our virtual team! So what are you waiting for?? The more the merrier!!

If you'd like to find out more about Great Strides, sponsor, or join my team, visit my team page Kaacky's S**t-Kickers!

New to the blogging scene!

Well, seeing that 'blogging' is the thing to do, I thought I'd try this out! Maybe I should have thought about it before I spent time with Facebook groups. MSN Spaces, CarePages, etc. - oh well, I'll just chalk it up to a learning experience (LOL)!

Seeing that I'm so new to this, it may take a while before things look sensible - bear with me!

Out and About - CN Tower

What a beautiful day here in Toronto! Darren and I decided that we would get out and do some sight-seeing of the 'big city' since the weather is now cooperating. It's finally warm enough to walk around and be comfortable - not shaking and shivering with every step!

Athough Darren had visited before (years ago), I had not, so we decided that we would take the 'grand tour' of the CN Tower. If I must say so myself, it was a wonderful experience! With my new lungs, I was able to experience everything 'normally' - able to walk the stairs, go outside in the wind - EVERYTHING!

After travelling up the elevator at 20 kms/hr and watching the ground get further and further away, Darren decided that he would test out the Glass Floor. As you can see, he quite enjoyed it - me on the other hand - I took a look down, but was NOT setting foot on the glass! Of course, Darren being his ol' dare devil self couldn't just walk out on the glass - he had to stretch out!


Once Darren had his fun on the Glass Floor, we went out on the Observation Deck. We thought it was windy in Newfoundland! I understand now why they have the railing and steel netting - LOL!

It was a little colder at that height - more so than I had expected - but we still had a blast! It was a little too cold to walk all the way around - should have dressed warmer - darn! Now we HAVE to go back - LOL.

After enjoying the sights and sounds of the Tower, Darren and I visited the 360 Restaurant and had a wonderful meal while revolving around the city! We took some photos and just enjoyed the view.

What a beautiful sight - but I bet it's even more beautiful at night! Maybe we will have to take another visit before leaving Toronto!

Post Transplant - DAY 1 & 2

Well, what a journey! The wait for lungs is finally over! Success!

After an 8 hour surgery, Darren was able to visit me at 7:30 am on February 22, 2008! The nurse woke me and I could hear Darren, Jill and the nurse by my side, but I could not answer or make any hand gestures - even though I was trying my best to do so! I do remember Darren cracking some joke and they tell me I shook my head in 'shame' - as for those of you who know Darren - it was something 'off the cuff' for sure! Apart from that, I remember thinking to myself - "Is it over already? That was too quick to be major surgery! Did something go wrong?" Darren reassured me that everything went fine and I was doing extremely well so soon out of surgery! I was pleased and drifted off to sleep again.

Come 2:00 pm that day, Darren returned to the hospital (from taking a well deserved nap) to find me wide awake! I haven't looked back since! I have to admit that the one night that I had the breathing tube still inserted, I was pretty pissed with it - it was SOOOOO irritating! Luckily I didn't have it too long - it was removed the day following surgery!

But even with the tube in - I still knew things were great! See - two thumbs up! I'm doin' fine!







As you can see, we're both relieved to have the tube removed! Everything feels so different! Apart from the pain of the 4 chest tubes - I'm feeling GREAT! Luckily the docs know the right combo of pain meds now to keep me comfortable - but alert! I had a few days of 'way too many pain meds' which left me 'out-of-it'. Darren got quite the kick out of me so drowsy - LOL - glad someone did! Apparently I was making NO sense at all ... not something I want to revisit!

WHAT A DIFFERENCE! I've been asked over and over about "how it feels to breath" - honestly, I can't answer that! All I can say is "it's just so different"! Completely different from my old CF lungs! No wheezing, no coughing, no shortness of breath, no gasping for air, NO OXYGEN! I can actually take a deep breath! I don't even remember how long it's been since I've been able to breath like this! I thought prior to transplant I was 'pretty healthy' for a CFer - boy was I wrong! Then again I guess for someone with 30 years of lung damage -just being able to open my eyes is 'good'!

Ok, ok, now you know I couldn't go without a foolish picture of me! This was the "will you frig off Darren" face! LOL!








36 hours after surgery - here I am! WALKING! I don't remember much of the ICU or Step-down units, but as you can see, I was wide awake - I guess - LOL! However, I do remember getting up and walking - mainly because of how easy it was breathing wise! Of course the pain helps to jog the memory too - hehe! Nevertheless, nothing was stopping me now! It felt great to actually get out of bed and walk around without getting short of breath!

The doctors were quite pleased with my progress - so much so, they removed 2 of the chest tubes before I left step-down ... the whole 3 days I spent there! I'm after a record breaker if you haven't figured it out ... so far I'm ahead of most ... LOL!

I was moved down to the 7th Floor on on Tuesday, February 26, 2008 - here's where I'll stay until the tubes come out and I can go 'home'! The tubes are doing more draining than the docs had hoped - but its nothing uncommon. We're going to leave them a little longer to get the fluid out - then I'll be ready to go!

Everyone including me are quite pleased and surprised at my recovery ... it's full steam ahead now!

Call #3 ... this is the one!

Just a quick post before we leave ...

We just got the third call - this HAS to be the one! I have a great feeling that it is!! The Transplant Coordinator at TGH just called to offer me some lungs - surgery is scheduled for 10pm tonight! Well, we have to get going, and with any luck you won't hear from me for a little while - LOL!

Keep your fingers crossed that this IS the call!

Still Here - Still Me

Well, I'm still here - WAITING! I'm heading off to St. Mike's for a check-up today. My lungs are feeling a bit 'icky' but I think this is as good as it's going to get!

I FINALLY got to put on a pair of jeans today - after 3 long months! Pajamas are really comfortable, but there was only some much more I could take! At least I feel like a 'normal' person today - LOL - apart from the hoses, wheel chair, coughing, wheezing, etc., etc., etc., - LOL!

The only thing is - I am SO SICK of waiting! I know there's nothing we can do about it - but it's really hard on times to say the least! If you only knew that it was going to be this month, or next month - but alas, no one knows. We keep praying that it will happen soon - I'm not sure how much more I can take - health wise ...

MOVING DOWNTOWN!

After having 2 "false alarms", we decided that it was in our best interest to move closer to the hospital in the event that MY surgery would be scheduled soon. With the help of my cousin and the wonderful people at the Delta Chelsea Hotel, we were able to secure a room with a kitchenette! We made the move today and are getting settled in as we speak!

Here are a few picture of our room - it's really cozy!

Bed and mini office

Kitchenette

Sofa ad living area

Our stay with Mick and Marina was fabulous, but beating back and forth from Etobicoke 3-4 times per week was too tiring - and not to mention an expensive cab ride! We're now only a hop, skip, and a jump from TGH! Much better than a 30-40 minute cab ride!

Thanks so much Mick and Marine for everything you've done!

False Alarm #2

Well, here we go again! I got call #2 this morning. We had to go to TGH for 9 am, have all the regular testing done and wait to see if surgery was going ahead. I was warned ahead of time that I was a "back-up" patient - this meaning that if the person scheduled for surgery wasn't able to go ahead, the lungs would be mine.

Unfortunately, only after an hour, we were told to go home again as the person originally scheduled for surgery was taken in. I did have a feeling that I would be called today - as it was my grandmother's birthday. I told Darren earlier this week that February 8 would be the date - but not so! Hey, I did get a call though! Third time's gotta be the charm ...

My two babies

I think the hardest part of this whole transplant thing is not only being away from family and friends (and of course our home) - but having to leave behind our two precious girls - Molly and Bertha! The picture above was taken a few days before we left to come to Toronto. How sweet are they? Cuddling up on the couch together!

Sadly the only 'good-bye' I got to say to my girlies was at the hospital when Darren dropped them off with our breeder. I HAD to say my good-byes, but having to do so in the hospital lobby just didn't cut it! I could tell they both knew something was wrong. Thankfully we have a wonderful breeder who graciously took in Molly and Bertha and has been caring for them since we've been gone! We keep in touch via email and phone - and everyone is doing just fine in NL. At least we don't have that to worry about!

It's still hard knowing they're home in NL without us. I know they are in excellent hands, and I would not make them suffer a plane trip here to Toronto - they are fine where they are - that's what I have to tell myself! Hopefully my wait won't be too much longer and I can get on the road to recovery and back home to my girls!

False Alarm #1

Well, I had my first 'false alarm'! You may ask what all this is about ...

Yesterday at 9am (as I was getting packed to go 'home') the nurse came into my room to tell me there were lungs for me! To my amazement I was quite calm when she gave me the news. After making sure that I was OK, I got on the phone and called Darren to get his butt to the hospital! Then there were the calls to Newfoundland. I don't even remember who I called first - LOL!

As Darren arrived the ambulance attendants were there to take me to TGH - this was 10am by this point. I arrived at TGH (which is about a minute drive from St. Mike's) and was admitted. Darren was right behind me. Then the fun began - WAITING!

I was preped, x-rayed, blood drawn - the whole works. Following this I was told that surgery was scheduled for 5pm. As time drew near I was given my first dose of anti-rejection medication. At 4:30pm the nurse came into the room to inform us that the surgery had been delayed and would take place at 8pm. Not to worry - just a few more hours. Well, as 8pm came and went, we were informed that once again surgery was delayed and would be taking place at 10pm. Finally as 10pm came and went - actually it was almost 12 midnight before we were told that one of the lungs were damaged and the surgery was called off. 

Disappointed, we spent the night at TGH. This morning we packed and headed out to Etobicoke to wait for the next call.