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 ... :)!

Amazing Day ...

After a 'week from hell', I just received the best news ... a new 'transplant family member' who received her new lungs almost 3 weeks ago is finally on the speedy road to recovery! After some set backs, things are moving along nice and quick ... she was moved from ICU to Stepdown yesterday and now to the 7th Floor today! FANTASTIC NEWS!

I saw a couple of pictures of her and she is looking wonderful! We're only chatted via email and I have been keeping constant contact with her mother via email also ... we were hoping to be able to meet in person when I go back to Toronto for my 2 year assessment in February 2010 ... but the way things are going, she may be home again by that time ... which I truly hope she is! KEEP UP THE GOOD WORK ASHLEY!! It's amazing how connected you can become without meeting in person!

Funny, I just read back on my last comment and noticed that it will be 2 YEARS since my TX in February! That's just crazy! I can't even recall all of the wonderful and exciting things that I've accomplished these past 2 years ... there have been just so many! I am so thankful for this wonderful second life I've been given ... there are still days that I just stop and think in amazement at the whole thing.

I've met so many wonderful and amazing people and wouldn't change any of it for the world ... I miss my CF and TX family :)

Natalia receives her call!!!!

I've started following Natalia's blog and watched her story on CBC - it's quite amazing how some people touch others lives.

I pray for each and every CF and transplant patient that I meet - Natalia being no different. It's somewhat of a understanding - as all our stories are similar and we often share experiences - good or bad.

I didn't think that I would be posting so soon - but Natalia has gotten THE CALL!!

After a few hours wait to see if the lungs were suitable, Natalia has now entered surgery! I pray that the surgery is a success and that this amazing woman is able to become the mommy that she's prayed of being!

Sending positive thoughts and lots of strength you way Natalia!

Natalia's Story

Well, it seems that CBC is doing an absolutely fabulous job of covering CF, transplant, and organ donation ... I AM SO IMPRESSED!

Natalia is another CFer who has been placed on the transplant list and is awaiting new lungs ... CBC's Mark Kelley has documented her story in a 3 part mini-series On A Mission. Unfortunately, as of the last airing (Friday, Nov 20), Natalia has taken a turn for the worst and is now on a life saving (temporary) device - Nova Lung. This is only a temporary solution to keep Natalia alive as her own lungs have stopped working.

I'm praying that new lungs come quickly for Natalia - as her strength and determination remind me of myself. I just love her statement that new lungs WILL come - and YES they will Natalia! A girl after my own heart!

This is yet another amazing story of life, strength, and determination ...

Natalia's Story: On A Mission

Where has the time gone?

I've been so engulfed in 'life' that I've totally forgotten about my blog! I am going to try and post some past events and important dates ... finding the time is going to be an issue!

I've learned a few things in the past couple of weeks ... something that I had thought that I understood - not so! Being from a small town with only 80+ CF patients, one is often isolated and ignorant to the terrible things that this disease brings with it. Yes, I've learn of CFer's who have lost their battle with CF, but apart from my cousin in 1991, I haven't really been close to anyone. Not by choice ... but just the nature of this disease and the geographical issues. This has all changed since beginning my transplant journey.

I've met some of the most wonderful people ... and have had some great losses within these past 2 years. Something that I've been pretty sheltered from.

Living with CF hasn't been easy, but it has been a blessing (in disguise). I would not be the person that I am today if it were not for this 'horrid' disease. Life is unpredictable during the best times ... let alone tossing CF into the mix. Obviously I WANT a cure, but to be honest, I wouldn't change anything at this point! Strange hey? It's quite hard to explain - unless you've lived it and loved it!

I know my journey with these new lungs has just begun ... I've been able to do so much within the past 21 months that I would never have been able to do before. I know sometimes that I take things for granted and that I often feel invincible ... but for me, that's a part of survival.

For me, I've lived one journey, now I've been blessed to be able to experience another ... sometime not a lot of people have the opportunity to do ...

65_RedRoses

I've been following a blog entitled "65 Roses" since early 2008, when I was waiting for my transplant in Toronto. Unknown to me, Eva has documented her story through CBC New Network and it's airing TONIGHT!

I'm excited to see how her story has been documented - as often times the 'real' story isn't told ... rather, the airing of our stories turn more into nice, frilly, pretty stories. Who, living with CF has EVER described our lives as that???!!!

This, if anything will be an educational piece around CF, transplant and organ donation ... PLEASE WATCH!

65_RedRoses

WIND STORM

 

 

Not exactly the picture I wanted to come home or wake up to today!  Yesterday we had a terrible wind storm that took out a tree that was on our neighbour's property.  Lucky for us it decided to come down across our driveway and tearing the power lines, cable and telephone off the house ... YIPPEE!

The pictures above is the aftermath, following some clean up ...

Close Encounter of the MOOSEY-kind

Typical September morning ... or so I thought!

Darren had been traveling back and forth to St. John's for work for over a year now ... but this morning would prove to be something totally different!



I hadn't expected the day to be any different until I got a call from Darren on his cell about 35 minutes after he had left the house ... all he said was "I hit a moose".

He wasn't making much sense at this point, which worried me TOTALLY ... I could hear him hustling about in the car and there was some background noise, but I couldn't hear if he was actually OK! He told me that someone had called the ambulance, and until I made him have the person call out to me on the phone, I really didn't know if help had been called!

I waited over an hour ... for a 20-23 minute run to the hospital. I started to get really scared that something horrible had gone wrong. I was constantly asking the nurses at the ER to check to see where the ambulance was ... no luck! FINALLY someone told me they had tracked down the ambulance and that they had been dispatched to a incorrect location! VERY GOOD!

They finally arrived and I was faced with a little bit of a shock ...



Darren had quite a few bumps and bruises; not including the cuts, scrapes and embedded glass! Luckily he wasn't in too much pain and after getting cleaned up ... he wasn't too shabby for what had happened.

I didn't get to have a close look at the car until it was towed back to Carbonear ... another lovely shock!

Our little Cavalier Z24 was demolished! The docs told us that if Darren had been driving with his seat in the full upright position, things would not have turned out like they had ... luckily, Darren always drove with his seat reclined a little ... something that saved his life!

The moose had landed on the driver's side roof area and needless to say, he didn't make it ... the rest of the car was pretty much in perfect condition!



As you can see from the bottom pic ... Darren didn't even have enough room to move his head from side to side while he was in the car! Thankfully someone was watching over him that morning!

NEWEST ADDITION ... PART 4!

September 15 2009 - 4th sitting

It's been a long wait since my last sitting and I was getting a little anxious in wanting to get my tat completed.

I'm so impressed with the way that it's turning out ... today we completed to coloring and added some of the shading. Looks like I have 1 or 2 more sittings to have it completed ... oooohhhhh, can I hold out??!!

NEWEST ADDITION ... PART 3!

July 11 2009 - 3rd sitting

What can I say ... I'm LOVIN' it! I just got back from the shop and had to show off the colors that we added today!! I don't think I can stand the wait to see the finished piece!

... looks like a start to a back piece :)!