First and probably last holiday ....

I finally decided to take a few days off work and try to enjoy myself. Every year since I've graduated [2003] I have only taken time off for doctor's appointments, sickness, bereavement, to help friends, attend weddings, cancer treatments, and of course my transplant. I have NEVER taken a day for myself!

With my new job ... and permanent status, I decided to take a week. Yes, I know you're asking, "why only a week", but I did have a reason. Because I'm never really sure when Toronto will come a-calling ... I always want to have a few days banked for such cases.

Now after my weekend off, I was saying the same thing to myself ... "why didn't I take 2 weeks" ... and of course, the thought hadn't crossed my mind when I got 'a call' ... Toronto wants me back the first week of September!! As this is the 2 year mark from when I was exposed to b. cepacia, protocol is that I be followed for 2 years. If negative at that time, I should be in the clear for ever developing the bug. So far I'm testing negative ... only September will tell ...

Of course, here I am at the start of my official holiday and now this news ... why didn't I just want until September and take 2 weeks then??!! Now I'm feeling guilty that I have to leave work AGAIN .. plus the numerous tests and doctor's appointments that I'll have to have prior to the trip ... aaaagggghhhh!

SO, MY HOLIDAY'S ARE SHOT ...

Now what ... I'm heading back to work, no more relaxed then before ... and probably more stressed about the upcoming assessment in Toronto! Oh the joys of this wonderful, unpredictable, boring, yet exciting life ... YAY ME!

I think my next holiday will be a 2 week trip somewhere HOT ... and when will that happen ... your guess is as good as mine !!!

NEWEST ADDITION ... PART SIX ... FINISHED!!

I can FINALLY say my Phoenix tattoo is finished!! Although it took a year to complete, I did hold out and now I have the most wonderful artwork!

A tattoo like this doesn't actually take a year to do, but with my transplant, I wanted to make sure that each and every sitting was COMPLETELY healed to ensure I didn't pick up any infection. Thanks to White Scorpion Tattoo, I have EXACTLY want I wanted ... and even more!

The last sitting (and did I mention FINAL sitting) we added a little more shading, and changed the light purple to a darker purple ... I just LOVE IT!

So, am I finished with the ink ... NO WAY! I have my next appointment on October 2 2010 and have my next 2 tats picked out and ready to go. The first will be a memorial/honor tattoo representing my doggies ... stay tuned to see the final product!

BEAGLE PAWS

Considering that we adopted Willow from Beagle Paws ... I thought it was fitting to do a little promoting! Such a sweet video :)!

Nikki Yanofsky - For Another Day

Needless to say, I was happily surprised to find that my nephew had the opportunity to star in this video with Nikki Yanofsky!! Way to go Colby!!

BREATHING

Make an on-line slideshow at www.OneTrueMedia.com

I got the job ... PERMANENTLY!!

I was fortunate enough to get hired last year, May 4 2009, within a semi-government job. The problem at the time was I left a full-time contract job for a full-time temp job ... just a tad bit scary, considering we're still trying to "recover" from my transplant relocation in 2007/2008! I decided, despite all the question marks to make the move and hope for the best.

Luckily I was fortunate to work the entire year, up until June 1 2010 when I got another "call" ... I was offered a permanent, full-time job with the agency! Although it's not the ideal location for me (it's only a 35-40 minute drive) ... I jumped at the chance!

Our agency is in for some BIG changes, but at least I'll be going along with them :0)!

I'D GIVE YOU ONE

I just love this video ...

WILLOW ... the new baby!

Well, look at this face!

We decided to attend the Adopt-a-Beagle hosted by Beagle Paws on May 8 2010, St. John's, NL. I had always viewed the available Beagle's on the Beagle Paws website, but wasn't really prepared to take on that kind of responsibility when I hadn't met the poocher in person ... plus I had my girlies to think about.

We had no intention in adopting a new doggie, but when we saw this face, who could resist!!

Willow, as we are told, is approximately 1-2 years old and was relinquished by her owner because she didn't hunt. There was no known history of abuse (physical), but she was a tiny little thing when we saw her.

Willow came to live with us on May 8 2010 and has been a joy to our family! She's still very much a puppy at heart and of course the energy of a Beagle on top of that. We're not that use to such activity, as our puggies are very laid back and lazy girlies. Nevertheless, Willow has proven to wriggle her way into our hearts!

She's beginning to learn the rules of the house ... house training has proven to be her biggest challenge! Or maybe ours! Although she's still an active doggie, she is starting to relax a little and is fitting in just perfectly!

WELCOME WILLOW xoxo

LOVE, LOVE, LOVE

As I've mentioned previously on my blog, I found Eva Markvoort's blog, 65 Red Roses just following my transplant in 2008.  Eva had revived her transplant in 2007, but but later found out that she was experiencing chronic rejection.  Eva had only one chance, a second transplant.  Unfortunately, Eve's wait has come to an end.  Even though Eva had every bit of determination and stamina to wait for her surgery, her lungs were just unable to wait ... Eva lost her battle with CF yesterday, March 27 2010.

The world and CF community has lost a wonderful advocate and person.  Eva was full of LOVE and received just as much in return.

My only regret is that I was unable to meet Eva in person.

Eva, breathe easy ... and LOVE!

HAPPY 2ND BIRTHDAY LUNGS!

HAPPY 2ND BIRTHDAY LUNGS!

I'm not one to turn down a party ... and I just LOVE organizing and throwing a big bash ... and of course, even with some of the 'not so god things' happening, I had to wish my new buddies a HaPpY BiRtHdAy!!

I left the picture-taking to hubby, Darren ... needless to say, not such a good idea! I have 3 pictures of my party ... all included here ... LOL!

Well, at least he got the most important things ... the cake and ME :)!

This is my "cheese", now hurry up, pose ... HAHA!

Love for Eva

Just following my transplant in 2008, I stumbled across Eva's blog, 65 Red Roses. Her passions, energy, and raw emotion is what drew me to continue reading and following her blog.

Eva received her double-lung transplant in October 2007 and learned that she was in chronic rejection just shy of 2 years post-transplant. She has been struggling with her health ever since and has recently posted a farewell video to her friends, family and blog followers.

http://65redroses.livejournal.com/134498.html

Eva's story is one of strength, determination, and courage. She is nearing the end of her life and as of today, I'm not sure of the status of her health. She is listed for another transplant, but age old question remains ... will those lungs come in time?!

Hearing of these situations always brings me back to 'reality' and the reality of CF. Yes, transplant is a wonderful option for the end stages of CF, but it's NOT A CURE! I feel too often that those unfamiliar with CF and transplant think differently ... and once the person is transplanted, then everything is OK!

I feel so hopeless that all we can do is pray and WAIT!

I'm grateful for having CF, learning what I have learned from it, the people I have met, the experiences and knowledge I have gained ...

... but I'm hating what CF does, more and more ...

Please pray for Eva and send her your love ... she NEEDS it!

2 Years ... and now what?!?!

Celebrating my 2 year post-transplant birthday should be a very joyous occasion (and don't get me wrong, I am so grateful to have this wonderful new life) - but it seems that this beautiful bubble that I've been living in just sprung a leak!

I returned to Toronto General Hospital on February 1 2010 to begin the assessment phase of being 2 years post-TX. I've always enjoyed going back and meeting all the doctors, friends, TX family and getting back into the groove of the transplant life that we left behind in May 2008. I would never have thought that I would have missed the hospital and the 'rat-race' of pre and post-TX so much ... but, sadly I do! I think a lot of this 'grief' comes from loosing the personal contact and comfort of being surrounded by others going through similar situations. Yes, I'm still in contact via email, Facebook, etc. with my new TX family ... but it's just not the same. I actually feel quite alone here at home ...

... back to my assessment ...

I learned on Feb 1 that my FEV1 had dropped slightly during that day's PFTs. My range had been between 2.8 and 3.0, but on Feb 1 it dropped to 2.7. Now, that might not seem like a big drop, and no more is it, but the docs were very concerned that day - the dreaded CRONIC REJECTION was uttered. On top of that my cyclosporine levels were at 316 (supposed to be 100-150), potassium was through the roof, and my kidney function levels were all off .... WHAT IS GOING ON!?!?

So, I left TGH that day with very little explanation as to what was going on ... and to be fair to the doc, she did ask me if I had questions ... but I just couldn't think straight at the time, nor did I have any idea as to what I wanted/needed to ask. I hadn't felt so alone and scared since TX!

The next day I was due for my bronchoscopy. I arrived at the Endoscopy Unit in utter panic. Not because I was concerned that they were going to find something (as Chronic Rejection is not found via biopsy, rather through a process of elimination) - just to whole fact that I DIDN'T KNOW WHAT WAS GOING ON! Luckily I had the same TX specialist as the day before ... and we had a nice chat.

She explained CHRONIC REJECTION to me and advised that she was not extremely worried at this point ... rather she wanted to be overly cautious. She placed me on some new antibiotics/anti-inflammatory meds to see if there's something going on in there, and we will watch my PFTs very closely for the next 3-6 months. I did feel a little better with a more thorough explanation ... but, still, what does this mean for me??

I've entered a very scary place with post-TX ... and just as pre-TX, I'm back into the waiting game again now. I knew there would be ups and downs and that this is NOT A CURE ... but things have been going so well; I guess I've gotten a little too comfortable with my new "buddies" and back to my old way of thinking ... the invincible CF Warrior.

Right now I just have a slow leak in this beautiful bubble ... I'm hoping that it patches itself and doesn't "POP"!

AMY GOT THE CALL!!

After 2 long years, Amy has finally received her 2nd set of lungs. As we speak, she's in surgery!! Darren and I met Amy and her husband Kendall when we arrived in Toronto in December 2007. Amy had received her 1st transplant in 2004, and was back in Toronto in 2007 being listed for another transplant. Amy too has CF.

These east-coasters became good friends of ours and we have been waiting to hear the good news that Amy received her call!

I'm a little too ecstatic to write at this moment ... I'll post more when we hear some news!

Sending lots of love and healing thoughts your way Amy and Kendall! xoxo

ADULT CYSTIC FIBROSIS COMMITTEE

After finishing a conference call with the Adult CF Committee (ACFC), I realized that I had never mentioned throughout my blog that I am involved with this committee and have been since 2005!

I became involved with the ACFC as the Atlantic Regional Vice-Representative in February 2005. It was a new and exciting adventure for me - sitting on a national committee, advocating for individuals with CF. After all, what could a young girl from rural Newfoundland have to say?!?! I quickly learned what an exciting experience the ACFC was going to be. Unfortunately, from 2005-2008 I could only participate with the committee members via conference calling ... I didn't have the opportunity to meet anyone in person or attend any committee meetings outside NL. To be honest, I did feel pretty helpless and useless ... but I continued on.

Following my transplant in 2008 I vowed that I would become more active and would attend what meetings I could (without interfering with work) - and I did! It was an amazing opportunity to FINALLY meet all the members whom I had listened to and spoke with many times ... but never had met face-to-face. To backtrack a little, I was also successful in serving as the Atlantic Region Representative from 2007-present!

Nevertheless, in September 2008 I was exposed to B. Cepacia a dangerous "bug" affecting individuals with CF. Being a newly transplanted patient, I had to be carefully examined (and still do for up to 2 years) to test for the presence of this "bug". But what did this mean for the ACFC - well, it meant that I couldn't attend any meetings until I got the "all clear". So here I am, right back where I began ... unable to attend any meetings, functions, events, etc.

But the good news ... I've been "clean" up until now and I'm anticipating that following my 2 year assessment and bronchoscopy, I will be able to get right back into what I love to do!

To learn more about the ACFC, just click the title of this post!!! Or visit, www.cysticfibrosis.ca to learn all about the Canadian Cystic Fibrosis Foundation!

Natalia Goes Home!

I've been following Natalia's story ... as most CF and TX families have ... over the past couple of months. To sum it up ... that girl's one "tuff cookie" - but then again, I wouldn't have expected anything else from a fellow CF Fighter!

As you'll recall from my previous posts, Natalia was in pretty bad shape prior to her TX ... well to be honest, REALLY bad shape. After her lungs failed, she ended up on a Novalung to keep her alive. Thankfully, a donor was found and now Natalia is on her way to a new and wonderful life with her family!

We also learned today that Natalia has been discharged and is HOME! CBC has been following Natalia and her story - and have done a fantastic job! To see the latest of CBC's coverage ... visit: On A Mission: Natalia Goes Home!

Thank you CBC for a great story, and more importantly, stressing the importance of Organ Donation!

*Be a hero and save someone's life - be an organ donor*

RINGIN' IN 2010!!

2010 is here and 2009 is a distant memory - HA HA!

I have never wished my time away, and 2009 is no different. This Christmas season has been very quite, yet enjoyable. I have come to one conclusion though ... our old holiday traditions are just that ... OLD! 2010 is going to be a year of new beginnings!

2008 was MY year ... my new lease on life! Since that time I've seem to land right back into worrying about everything else but me. No more ... 2010 is going to be different. No more taking crap from others, worrying about things I can't change, or mot doing the things that I like to do. It's time to take care of myself AGAIN. It's time to get back to enjoying these wonderful "gifts".

So, I'm welcoming 2010 with optimism and a NEW positive attitude ... YAY for 2010!

Kelly's 2009 Review

WOW, doesn't seem at all like 2009 has been here and gone! As the old saying goes ... "time sure does fly when you're having fun"!

Here's my run-down of Kelly's Journey of 2009 ...

January - I had been back home in NL for 8 months now ... with my new lungs. Gearing up for my 1 year post-transplant anniversary!!!

February - YAY! Made it to 1 YEAR POST-TX! Feb 22 2008 will forever be etched in my memory!

March -

April - Celebrated Darren's 34th birthday!

May - Celebrated my 32nd birthday and began a new career with my social worker degree! Exciting times! Started my newest tattoo ...

June - The entire month of June was taken up with training and orientation to my new position ... officially slated into Child Protection on June 26!

July - Began a new adventure with my job in Placentia ... Darren also started a new career path ... good things happening!

August - Headed back to Toronto for my 18 month assessment! Great news and great results!!

September - Moving into fall ... busy times with work, home life, and CF fundraisers!!

October - Not a great month for me ... remembering my mom's death 3 years ago. But we also welcomed the newest addition to the Whalen/Delaney family ... Lucas Braden Whalen!

November - Gearing up for Christmas ...

December - Planning all my celebrations for the holiday season ... and hoping this year I'll be able to fit them all in.

December 31 - unfortunately I wasn't able to successfully carry out all my December/holiday plans ... but we had a great time ending 2009!

All in all ... a great year ... lots of new and exciting things ... and lots to build upon and look forward to in 2010!

Christmas 2010

Well, after about 455 pictures ... we got one!!  I guess attempting to take a family photo without the assistance of another pair of hands isn't such a good idea!  Nevertheless, we did get one ... and I'm pretty happy with the results!

The adventure to this single photo wasn't so pleasant .. LOL ... as you'll see from the few pics below ... it was never a dull moment with our two puggies HAHA!

HAHA, just too funny!

HAPPY HOLIDAYS!

As the year comes to a close, I often reflect on the past year and seriously thing about the things have have brought me joy and happiness ... and also not to forget those things that we're so pleasant, but which I gained valuable experience.

I've never been the type of person to question "why me" ... everything that's handed to me in life I take with stride. Yes, I'll often complain and do a little bitching ... depending on the situation. But overall, I manage to deal with the obstacles and come out the other side more wise.

This being my second Christmas post-transplant, I am forever grateful for the donor family that found the kindness in their hearts to make the ultimate sacrifice ... yet saved my life. If there is one wish that I could send out this season ... I would like to send out some huge hugs and kisses to my donor family and wish them the merriest of Christmases! I am so blessed to have my own family - AND a special family that will remain with me forever!

MERRY CHRISTMAS and HAPPY HOLIDAYS!

NEWEST ADDITION ... PART 5!

November 30 2009 - 5th sitting

IT'S COMPLETED ... well, almost :)! Today we added the shading! I just love how it turned out ... perfect Asian style tat!

We just have 1 more sitting to brighten up the colors ... and as my artist tells me ... to "tighten up" the tattoo!

Now ... on to my next piece ... :)!