So last night a nurse said to me "oh so your officially listed...so you could go at any moment" ah I thought...well yes...I suppose I could...when you put it like that, it's kind of scary.
Today I was out for lunch with Q, and I looked at my cell phone, just in case you never know! haha and I had three missed phone calls, all by unknown numbers...I was like nooo your joking me, no that's impossible, they don't have lungs yet, and to top it off I had JUST canceled my answering machine service, so I start freaking out, but it was just the physio/exercise room calling to set up appointment times for next week. That's been happening to me a lot...and it's only been 2 days! Gotta relax, stop thinking about it so much haha Top of the To Do List...get answering machine for phone. ASAP
I also have been getting a lot of questions about "how will people be able to keep up to date on when I get the call? how everything is going after surgery? in the ICU unit and the step down unit? Will someone be able to update my blog?" Well my cystic cyster, since she is a journalist, has her own blog, one of my dearest friends, AND has CF too, thus knows all the lingo etc, is the perfect candidate to update my blog while I cannot..and since my mama is not that great on the computer, My mom will phone L with updates, so she can update everyone else via the blog.
So yeah that's how that will work!
On the other front, we have been getting soooo much support, donations, volunteers, awareness already from that local newspaper article. Media is a powerful tool! It's great!
Friday, May 28, 2010
Thursday, May 27, 2010
"Because they need you to care as much as they do"
The local newspaper article is out. You can check out the link by clicking here to read it online. It was on the front page! Wow...total shocker. I did not know that was going to happen, and my face is HUGE...yikes haha I thought it was just going to be a little blurb about our fashion show, and a photo of the girls at Glen Eagle! One of my best girls, BB calls me this morning, and reads me the article over the phone with tears streaming down both our faces. This article I hope will only gather more awareness for CF and promote organ donation strongly. It's just the beginning, as the committee kicks off the summer with all the other promotional events to create awareness! We are the Go go girls! or was it the ya yas? or ga ga's? (right girls? hahaha)I think Matthew Strader did a great job on the article. I was worried that a lot of the facts would not get through, but it's a really, really well written article. I'm really proud of it. I am so lucky to have such an amazing group of friends. They care so much, and are fighting so hard to get the word out about organ donation and Cystic Fibrosis. Damn...these girls got it. Thank you guys so much. I love you to the moon and back.
The newspaper article has already spawned some sponsorship from the Toronto Fashion incubator for our raffle and some sponsors from some Toronto independent designers for our fashion show!
Here is the article copy and pasted from the online version which you can see by clicking here
A summer for Hattie
Thursday May 27 2010
By Matthew Strader, Enterprise Staff
Hattie’s crew: Just a few of the girls who are going to be working this summer to raise money for Hattie Dunstan and the Cystic Fibrosis Foundation of Canada showed up at Glen Eagle Golf Club to show their support, and share their stories. (From left - Top row) Carly Gordon, Nikki Bettinelli, Katherine McCool, Brittany Bolton, Sarah Moyer. (From left - Bottom row) Katie Alderdice, Kim Alderdice, Julie Hauser, Danielle Venditello, Aimee Gilbert and Rachale Grice. 
Print this article
Email this articleHattie Dunstan is dying.
Her lungs are broken.
“Last Tuesday was one of the scariest moments of my life,” she said. “I woke up, and I couldn’t breathe. I thought someone was going to have to manually move my lungs. It’s such a roller coaster ride. Some days I’m coughing up blood and some days I feel okay.”
Dunstan was diagnosed with Cystic Fibrosis (CF) at six months old – a fatal disease that causes progressive disability, primarily in the lungs and digestive system. Cycles of infections and inflammation are caused by buildups of thick mucus and bacteria. Many CF patients have to resort to lung transplantation at an early age.
Today, Dunstan is 22, and her life is dominated by four things. Two of them are a hospital bed and a wait for a double lung transplant.
Keeping the smile on her face are the other two, her family and friends, and fashion.
This girl loves fashion.
At 16 years old, she launched You’ve Got Hattitude.
Not able to work a normal job because of her health problems, Dunstan has thrown herself into the personalized jewelry she sells online (www.gothattitude.com).
She won’t give up, and she won’t let her problems force her down.
As is the case with many Cystic Fibrosis patients, it’s hard to tell there is a silent killer inside. But on the inside of this Caledon girl’s frame is everything genuine. And that is why, in their early 20s, when a group of girls should be focused on the less serious side of life, Dunstan’s friends are giving up their summer and giving it to Hattie.
The plan is to put on a number of fundraising events for CF.
They don’t know what they’re doing.
They don’t know where to start.
They don’t care.
“It’s pretty easy to say yes to Hattie,” said Rachael Grice. “She’s so full of love and life and laughter. We all love her so much.”
“For me, hanging out with Hattie made me feel alive and made me realize that I need to stop taking things for granted and appreciate the friends and the life that I have,” offered Brittany Bolton.
“I can remember going to the movies with her once, and we had to run from the parking lot to the theatre. She had to slow down. She had to stop and catch her breath, and it was, wow, this is real,” said Kim Alderdice.
“Everything she has done. Being so incredible, coming up with the idea to do these fundraisers, creating the book club that we all belong to – and we try to read the books – she keeps us together. We owe her so much.”
So Dunstan’s inspiration began with fashion. And the first event was planned.
A fashion show called Couture Fashion for a Cure Found will be held at Glen Eagle Golf Club on August 26.
The show will feature the girls, and more of their friends as models of local fashion outlets Chez Thrift, DK Bridal, Klementine’s Boutique, Taessa Chorny, Habit, Body Graphics, Hannah’s and You’ve Got Hattitude.
The girls are now on the lookout for title sponsors, and donations from businesses and individuals. Title sponsorship will get businesses free tickets and advertising at the show and on a website they are about to launch (www.fashionforacure.org). Sponsors will also be included on flyers, tickets, the program, given an opportunity to speak at the show and more.
The group is also reaching out for lower level sponsors, donators and prize sponsors, as they hope to have a raffle booth.
“It’s been a learning experience,” said Alderdice. “We didn’t and don’t know what we’re doing, but the Peel division of the Canadian Cystic Fibrosis Foundation has been incredible. They’ve printed tickets, flyers, lent us advice and loaded us up with the material we need.”
And so, the girls are off to work.
Do they need inspiration? Not a chance.
“Just think about what Hattie has to go through,” said Bolton.
“We think about the things we get to do everyday, how much of a pain it is to get ready for something, or if our toothpaste tastes bad in the morning. We don’t have the right to complain,” said Grice.
Dunstan’s morning routine can take hours. Just to get up.
“I take close to 20 pills in the morning, and probably close to 60 a day,” she said. “Then I do a 20 minute nebulizer mask and wait a half hour. I do physiotherapy (30 minutes) to clear the mucus from my lungs, do another hypertonic saline mask which takes another half hour, then I have to go on the treadmill to exercise my legs.
“Then I have to shower, with oxygen on, and then I have to get dressed, both of which can take half an hour. By the time I do all that it’s lunch. It’s a high fat diet, and we have to eat a lot because we can’t absorb the fat so I take enzymes and another 15 pills at lunch. I became diabetic from the steroid they put me on to open my airways because I’m very asthmatic, so I have to take insulin every morning and every time I eat. At 3 o’clock I repeat my masking and chest percussions, and I do it again at nighttime. So, yeah, it’s a lot.”
Is she scared? “I’m scared ——less,” she said. “But in a way, I’m not. My doctors have said I’m a prime candidate for this transplant. That all my other organs are in great shape. I should do fantastic. So, I’m thankful. I just think about all the things I’m going to be able to do after it. I think about my friends, and my family, and I’m thankful.”
“This summer will be about showing her that we’re the ones who are thankful,” said Alderdice.
The fundraising begins at Main Street Station Pub, with the Main Street STRUT for the Cure on Thursday June 10. The girls will take over the bar, charging a $10 cover for the Cystic Fibrosis Foundation, and putting on a humorous fashion show that will feature girls in boxers and boys in stilettos.
“They’ll do it,” Grice joked about the guy friends they haven’t warned yet.
Main Street will offer half price appetizers between 8 and 10 p.m. and $5 runway cocktails all night.
And there’s more to come. They have an idea about a car wash, a possible jewelry booth at local markets, and more. But for now, it’s just the beginning of the summer.
And hopefully, a new beginning for their friend Hattie.
“Traveling around New York, and having to wear oxygen to walk around with my friends, that’s when it hit home,” Dunstan said. “Now, I get lung envy all the time. I never used to, but I can’t even put on my jeans without gasping for air. This is not what life is supposed to be like.”
Her friends feel the same. And they’re going to do everything they can to change it.
“We love you Hattie,” the group shared.
To become a premiere, executive or prize sponsor, to donate or find out more information for Couture Fashion for a Cure Found contact the group through e-mail at: CFFashionshow8@gmail.com, or call: (647) 273-7033.
To donate to the Canadian Cystic Fibrosis Foundation, contact the Peel division at (905) 450-1882 or online at: www.ccfpeel.org
And keep up with the group all summer, and find out about their other upcoming events at www.fashionforacure.org.
My favourite part of this article is the caption at the bottom of the photo about my friends, on the front page. "At Six months old, Hattie was diagnosed with cystic fibrosis, the most common fatal disease affecting Canadian children and young adults. There is no cure, Hattie however, has two things in her back pocket - a zest for life, and a pack of friends that are not going to let their girl go down without a fight."
I love my friends to the moon and back. You are all amazing, thank you, thank you, thank you for spreading the word on Organ donation and raising money and awareness for Cystic Fibrosis. You guys rock my socks. seriously.
Wednesday, May 26, 2010
Today it begins!
Today, Wednesday May 26th, 2010 I begin the next step in my journey. I was officially listed to get a double lung transplant today.
This morning, my dad, younger brother (older brother is sick, so was not able to make it!) and mom went to meet with one of the 5 surgeons who perform the surgery. He was very nice. He spent an hour with us, answered tons of questions. I kept looking at his hands the whole time to see if there were any shakes or twitches! haha (mine were trembling like crazy as I signed the five million places on all the sheets) Thankfully his hands were steady as a rock!
He gave me the odds of my death from this surgery from when i enter the hospital from when the time that I leave, meaning the recovery time, as well as the actual surgery itself. Based on my six minute walk tests, how far I am able to walk, my heart scans, my age, all my other testing etc. I have a 2% chance of death. 98% chance of surviving everything, all the pneumonia, infection, surgery itself, heart attack risks, everything afterward...sooo those are some prettyyyyy good odds my friends. At first I was like BAH in my head...because this surgeon was saying I have a 2% chance of dying...2% is still 2%!! but then you think about it, and really, that's nothing! You probably have a greater chance of getting hit while bicycling down the streets of Toronto then I do dying with this major life saving surgery.
I also signed on board for two research studies taking place. The ex-vivo lung check out the youtube link below! Created at TGH, they put the lungs in and are able to use what they once thought they weren't able to by the 'standard' system. They are even able to make the lungs breathe and cells rejuvenate by putting the lungs at room temperature again...it's still research, but maybe within in the next six months to a year, this ex vivo lung will become the 'standard' way to access lungs! I think I want my lungs to go through this process, rather then the regular way. haha
Another research study I signed the papers for was stem cell research. Them growing us our own lungs from our own stem cells. Hello? Yes please. I signed this thinkin' of my cystic cysta! L keep holdin' on so that they can grow you your OWN lungs one day baby!
How exciting eh? It's so sci-fi. We asked how long in to the future would that be? 5 years? 10 years? 20 years? 50 years? He said, more then 5...but not too far off. Exciting!
So I am extremly excited and am on pins and needles ALL the time...as essentially my call could come WHENEVER! One of my dear friends was over visiting tonight, (I love you Swin!!) and we are planning a trip to Ireland post transplant! I cannot wait for new lungs. I cannot wait to start re cooperating, and I cannot wait to start living life again!
I am afraid of waiting and getting more sick though.... I want to walk in just as I am right now, so I have the best odds, and the greatest chance of success. It's not fair that people die waiting for new lungs.
Organ donation is soo important. Please talk to your loved ones tonight, ask your co-workers, talk to everyone you know about their wishes for organ donation and send them this link! Why do they have to chose between the sickest people, and the non sick people, everyone should just get organs! It's not fair that we have to wait so long for new lungs, which makes the recovery process that much harder. Organ donation is too important. You can register by clicking here to become an organ donor in the Ontario database. Just download the form, pop in the mail and save a life one day, more then one life!
"Organ donation saves lives and is often the only treatment option for people with organs that are damaged through injury or disease and who would otherwise die.
Eye donation restores sight after disease, injury or congenital blindness.
Bone donation restores mobility and prevents amputation.
Hearts donated for heart valves repair birth defects in children and others.
Skin donation provides life-saving wound covering for burns.
Transplants not only save lives, they recapture productive lives. Outcomes continue to improve each year so more and more transplant patients are living enhanced, productive lives."
This morning, my dad, younger brother (older brother is sick, so was not able to make it!) and mom went to meet with one of the 5 surgeons who perform the surgery. He was very nice. He spent an hour with us, answered tons of questions. I kept looking at his hands the whole time to see if there were any shakes or twitches! haha (mine were trembling like crazy as I signed the five million places on all the sheets) Thankfully his hands were steady as a rock!
He gave me the odds of my death from this surgery from when i enter the hospital from when the time that I leave, meaning the recovery time, as well as the actual surgery itself. Based on my six minute walk tests, how far I am able to walk, my heart scans, my age, all my other testing etc. I have a 2% chance of death. 98% chance of surviving everything, all the pneumonia, infection, surgery itself, heart attack risks, everything afterward...sooo those are some prettyyyyy good odds my friends. At first I was like BAH in my head...because this surgeon was saying I have a 2% chance of dying...2% is still 2%!! but then you think about it, and really, that's nothing! You probably have a greater chance of getting hit while bicycling down the streets of Toronto then I do dying with this major life saving surgery.
I also signed on board for two research studies taking place. The ex-vivo lung check out the youtube link below! Created at TGH, they put the lungs in and are able to use what they once thought they weren't able to by the 'standard' system. They are even able to make the lungs breathe and cells rejuvenate by putting the lungs at room temperature again...it's still research, but maybe within in the next six months to a year, this ex vivo lung will become the 'standard' way to access lungs! I think I want my lungs to go through this process, rather then the regular way. haha
Another research study I signed the papers for was stem cell research. Them growing us our own lungs from our own stem cells. Hello? Yes please. I signed this thinkin' of my cystic cysta! L keep holdin' on so that they can grow you your OWN lungs one day baby!
How exciting eh? It's so sci-fi. We asked how long in to the future would that be? 5 years? 10 years? 20 years? 50 years? He said, more then 5...but not too far off. Exciting!
So I am extremly excited and am on pins and needles ALL the time...as essentially my call could come WHENEVER! One of my dear friends was over visiting tonight, (I love you Swin!!) and we are planning a trip to Ireland post transplant! I cannot wait for new lungs. I cannot wait to start re cooperating, and I cannot wait to start living life again!
I am afraid of waiting and getting more sick though.... I want to walk in just as I am right now, so I have the best odds, and the greatest chance of success. It's not fair that people die waiting for new lungs.
Organ donation is soo important. Please talk to your loved ones tonight, ask your co-workers, talk to everyone you know about their wishes for organ donation and send them this link! Why do they have to chose between the sickest people, and the non sick people, everyone should just get organs! It's not fair that we have to wait so long for new lungs, which makes the recovery process that much harder. Organ donation is too important. You can register by clicking here to become an organ donor in the Ontario database. Just download the form, pop in the mail and save a life one day, more then one life!
"Organ donation saves lives and is often the only treatment option for people with organs that are damaged through injury or disease and who would otherwise die.
Eye donation restores sight after disease, injury or congenital blindness.
Bone donation restores mobility and prevents amputation.
Hearts donated for heart valves repair birth defects in children and others.
Skin donation provides life-saving wound covering for burns.
Transplants not only save lives, they recapture productive lives. Outcomes continue to improve each year so more and more transplant patients are living enhanced, productive lives."
Tuesday, May 25, 2010
tired.
I'm really tired...it's exhausting talking to someone about how your dying...
My friends and I have been working on a fashion show for August. It's a fundraiser for Cystic Fibrosis, featuring 8 local fashion houses, and independent designers. We asked the local newspaper if they could do a write up on the show and help promote it. Tonight he took a photo of all the girls about 10 or 12 of them (who are either modeling in the show, or on the committee putting it all together) in front of the golf course where the event is going to be held. Then he interviewed 3 of my friends on the committee and they speakerphone conferenced me in from my hospital room....
I think today was the first time I said out loud "I'm dying"....and I said it on the phone to a stranger...I'm only 22...I shouldn't have to say that...
I hope that this newspaper article brings more awareness about CF. I hope it makes more people express their organ donation wishes to their family members. I hope for so many things.
I will tell you one thing...talking about death and how your dying is one sure way to give your sinuses a good clean rinse! ha
Looking forward to tomorrow and getting listed officially. Starting my new journey with the hope of new lungs, my new life, my new breath...gotta keep looking forward. One day at a time.
My friends and I have been working on a fashion show for August. It's a fundraiser for Cystic Fibrosis, featuring 8 local fashion houses, and independent designers. We asked the local newspaper if they could do a write up on the show and help promote it. Tonight he took a photo of all the girls about 10 or 12 of them (who are either modeling in the show, or on the committee putting it all together) in front of the golf course where the event is going to be held. Then he interviewed 3 of my friends on the committee and they speakerphone conferenced me in from my hospital room....
I think today was the first time I said out loud "I'm dying"....and I said it on the phone to a stranger...I'm only 22...I shouldn't have to say that...
I hope that this newspaper article brings more awareness about CF. I hope it makes more people express their organ donation wishes to their family members. I hope for so many things.
I will tell you one thing...talking about death and how your dying is one sure way to give your sinuses a good clean rinse! ha
Looking forward to tomorrow and getting listed officially. Starting my new journey with the hope of new lungs, my new life, my new breath...gotta keep looking forward. One day at a time.
Tomorrow I get listed
My transplant coordinator called me today and I have a meeting with the surgeon tomorrow morning at 10 am to sign the papers. Then a meeting with her afterwards to get the full low down on what happens when I get the call, and to get my pager etc. BAH! Soooo I guess tomorrow is the big day. I will update again tomorrow afternoon once I am officially on the list!
Saturday, May 22, 2010
Fibro is gettin' married!
My fello fibro (cystic fibrosis brother) is getting married today! His name is Ronnie, you can check out his blog by clicking here. He is one of the reasons why I started working out a year ago. He is such a huge inspiration to the CF community. Him and (his soon to be wife after today!) Mandi have created cysticlife.org together, and write an amazing blog to help inspire, and promote CF. Today him and Mandi are getting married! Congratulations guys!
Here is a cute video they put together!
Here is a cute video they put together!
Thursday, May 20, 2010
friendship is like peeing your pants, everyone can see it, but only you can feel it's warmth
I got this email from one of my best friends, K. We became friends in grade 9, but the world wanted us to meet MUCH sooner then that, as we found out. We did gymnastics as little girls together, had cottages near each other, played baseball in the summers growing up as children together, but still never became friends, in fact we were sort of enemies...yet the world had bigger plans for us. When we were 14, we fell in love with each other, and have had a kindred bond ever since. This is the poem I got from her!
replacement body parts
Tuesday morning was one of the scariest moments I have ever had in my whole life. I woke up and could not breathe...I actually thought to myself...oh so this is what it's like to die struggling...It was so extremely scary. I've been sick, well I mean I am sick, and I can't breathe very well, but I've never had what happened to me Tuesday morning, happen to me EVER. My chest enclosed in on me, where it felt as if I could not take a breath anymore. It felt like someone was going to have to stand over me, and start moving my lungs manually for me because it honestly felt like I was not going to be able to do it anymore. They felt like they were going to collapse and that would be it. SCARY.
Even talking to the resident doctor trying to explain to her how I was not able to breathe, I had to stop every second word. I never want that to happen to me again. It is too scary. I called my parents in a panic, and my mom had to say to me, stop talking, it's okay, we're coming. I felt bad to scare them and rush them down, but I was scared too!
Thankfully, they switched my drugs the day before, and with the help of oxygen ALL day on Tuesday, and the new drugs kicking in, I was feeling much better by Tuesday evening, after I saw my physiotherapist, E, and got a lot of the mucus out. I was then able to breathe a little more, able to talk without stopping every few words, able to feel as if I was not drowning. I was able to shake the feeling that someone needed to push together my lungs and do the work for me.
My main stay doctor came in Tuesday evening to calm my fears down, and to reassure me that if that did happen again they have options for me. It's called a bi-pap. It's basically this mask/machine thing that goes over your face and blows air into your lungs, and does the breathing for you...sometimes patients pre tx need this at night to help them breathe, since our lungs are giving out. She said she did not think that would happen to me again, but I think she just wanted to assure me that if it did keep happening, that there were other options. I would not have to suffer, or feel scared like that again, that I could go on the bi-pap machine to help. (I'm scared of the bi-pap though, only cause then things are really gettin' down there...sigh) I hope these new lungs come before I get sicker and need that.
I am feeling a lot a lot better on this new combo of medication though, so there is some good news! I got my white blood cell count back, for the last 3 weeks it has been at 19 or 20 (under 10 is normal) and today it was much lower, still not perfect, but it is going in the right direction for the first time in weeks!
I started strength training with my physiotherapist E yesterday. (She is the coolest chic ever, and has so many visions and ideas she wants to implement for the CF program, but due to lack of funding, etc. they are long term goals...it's people like her, the innovators that the CF world needs!) We're trying to keep my muscles strong while I'm in here, so that the recovery after transplant will be quicker. I nearly keeled over yesterday, it was SUCH hard work.
My doctor just came in and said the transplant meeting went great, all according to the master plan. I'll be listed at status 2, the highest status. I'll meet with the surgeon next week or the week after and sign the papers. It's kind of just a formality for the list, but I won't be "officially" listed till I sign the papers. But if lungs were for some reason come up and no one else met the criteria before I've signed the papers, then I would get them...(not likely) ugh, everything takes so long. I have to work on patience. I will be the most patient person ever after this maybe? maybe not? haha
Good news is, my mama washed my hair today (all my pretty curls are out in full swing, due to the humidity today too!) and I put on a dress, strapped on my O2 and went for a little walk with her (could only due 15 minutes today, since I was taking such deep breaths for most of the walk) The weather is amazing today and my flower 'garden' ledge is looking great.
Man this is all really scary, but I just need to stay as 'healthy' as possible, so I have the best recovery after wards. I'm hoping June for some new lungs. June seems like a good month. A fresh month. A good month to get some replacement body parts.
Even talking to the resident doctor trying to explain to her how I was not able to breathe, I had to stop every second word. I never want that to happen to me again. It is too scary. I called my parents in a panic, and my mom had to say to me, stop talking, it's okay, we're coming. I felt bad to scare them and rush them down, but I was scared too!
Thankfully, they switched my drugs the day before, and with the help of oxygen ALL day on Tuesday, and the new drugs kicking in, I was feeling much better by Tuesday evening, after I saw my physiotherapist, E, and got a lot of the mucus out. I was then able to breathe a little more, able to talk without stopping every few words, able to feel as if I was not drowning. I was able to shake the feeling that someone needed to push together my lungs and do the work for me.
My main stay doctor came in Tuesday evening to calm my fears down, and to reassure me that if that did happen again they have options for me. It's called a bi-pap. It's basically this mask/machine thing that goes over your face and blows air into your lungs, and does the breathing for you...sometimes patients pre tx need this at night to help them breathe, since our lungs are giving out. She said she did not think that would happen to me again, but I think she just wanted to assure me that if it did keep happening, that there were other options. I would not have to suffer, or feel scared like that again, that I could go on the bi-pap machine to help. (I'm scared of the bi-pap though, only cause then things are really gettin' down there...sigh) I hope these new lungs come before I get sicker and need that.
I am feeling a lot a lot better on this new combo of medication though, so there is some good news! I got my white blood cell count back, for the last 3 weeks it has been at 19 or 20 (under 10 is normal) and today it was much lower, still not perfect, but it is going in the right direction for the first time in weeks!
I started strength training with my physiotherapist E yesterday. (She is the coolest chic ever, and has so many visions and ideas she wants to implement for the CF program, but due to lack of funding, etc. they are long term goals...it's people like her, the innovators that the CF world needs!) We're trying to keep my muscles strong while I'm in here, so that the recovery after transplant will be quicker. I nearly keeled over yesterday, it was SUCH hard work.
My doctor just came in and said the transplant meeting went great, all according to the master plan. I'll be listed at status 2, the highest status. I'll meet with the surgeon next week or the week after and sign the papers. It's kind of just a formality for the list, but I won't be "officially" listed till I sign the papers. But if lungs were for some reason come up and no one else met the criteria before I've signed the papers, then I would get them...(not likely) ugh, everything takes so long. I have to work on patience. I will be the most patient person ever after this maybe? maybe not? haha
Good news is, my mama washed my hair today (all my pretty curls are out in full swing, due to the humidity today too!) and I put on a dress, strapped on my O2 and went for a little walk with her (could only due 15 minutes today, since I was taking such deep breaths for most of the walk) The weather is amazing today and my flower 'garden' ledge is looking great.
Man this is all really scary, but I just need to stay as 'healthy' as possible, so I have the best recovery after wards. I'm hoping June for some new lungs. June seems like a good month. A fresh month. A good month to get some replacement body parts.
Monday, May 17, 2010
tired.
Today was a bit of a harder day. I'm mentally a bit fatigued today. I'm hoping tomorrow will bring warm weather, less pain, and easier breathing.
Today my oxygen is quite low, now needing oxygen sometimes just sitting. It's also more difficult to hold a conversation as my voice is weaker from lack of air...
One of my favourite docs is on the ward this week. I cherish her dearly. She decided to try switching the drugs today, to see if we can get some more improvement, again the plan is to try to get me stable so I can go home and wait for this new gift, these new lungs.
It's scary not knowing when the new lungs will come, it's scary not knowing how much worse will I get. I just have to take each day one day at at time. I cannot think too far in the future, even a week, a month, that's too much, just tomorrow. We'll deal with tomorrow. I think that will be easier, less scary. Today is a tiring day. Which is why it was so nice to receive a bouquet of flowers, sun flowers because "I'm sunny" from one of my best friends N. Thanks girl. I love you. They came on the perfect day.
I think these new drugs will help me though. One of them I have never been on before, so that's good. My doctor also has some back up plans, so that is always nice to know they are not out of options for medicine yet, although it's getting down to the last grind. I hope these new drugs are able to clear up this pain in my lungs...sometimes it is so painful to even touch, it made me feel a bit nauseous when I put my hand on it, (I guess that's a sign I shouldn't be touching that spot right? ha)
Today I went out for a 45 minute walk around the hospital with my mom. I wore oxygen out today. I have to keep going out for walks and getting on the stationary bike as I can feel my muscles melting in here. I want to "walk in" to surgery, so I can "walk out". The better shape you are the less recovery time. It's interesting watching people's reactions, I ponder what they are thinking when they see a young 22 year old girl (dressed as a cool chic! haha) walking around with oxygen...I should wear a sign, I have a cystic fibrosis, and am waiting for a new gift of life, a double lung transplant. Organ Donation saves lives. "Don't take your organs to heaven, heaven knows we need them here", something to that effect. Then they wouldn't have to ponder anymore. They would know.
I used to dread whenever I would get sick in the past 6 months and require oxygen...now I don't really mind walking around with it, I guess I'm past that point...I just want these new lungs. I want to start living again. Today me and my mom were brainstorming for post tx when I will open up my own clothing store, where Hattitude jewellery will be sold as well. It's going to be so much fun. I really cannot wait, because it is something I was never going to be able to do prior to a lung transplant. Maybe that it something I will start to plan and write, a business plan for my new store. Any ideas for the store name? They say waiting is the worst part for new lungs, and writing a business plan might be a nice distraction. This Friday I will officially be listed.
Today my oxygen is quite low, now needing oxygen sometimes just sitting. It's also more difficult to hold a conversation as my voice is weaker from lack of air...
One of my favourite docs is on the ward this week. I cherish her dearly. She decided to try switching the drugs today, to see if we can get some more improvement, again the plan is to try to get me stable so I can go home and wait for this new gift, these new lungs.
It's scary not knowing when the new lungs will come, it's scary not knowing how much worse will I get. I just have to take each day one day at at time. I cannot think too far in the future, even a week, a month, that's too much, just tomorrow. We'll deal with tomorrow. I think that will be easier, less scary. Today is a tiring day. Which is why it was so nice to receive a bouquet of flowers, sun flowers because "I'm sunny" from one of my best friends N. Thanks girl. I love you. They came on the perfect day.
I think these new drugs will help me though. One of them I have never been on before, so that's good. My doctor also has some back up plans, so that is always nice to know they are not out of options for medicine yet, although it's getting down to the last grind. I hope these new drugs are able to clear up this pain in my lungs...sometimes it is so painful to even touch, it made me feel a bit nauseous when I put my hand on it, (I guess that's a sign I shouldn't be touching that spot right? ha)
Today I went out for a 45 minute walk around the hospital with my mom. I wore oxygen out today. I have to keep going out for walks and getting on the stationary bike as I can feel my muscles melting in here. I want to "walk in" to surgery, so I can "walk out". The better shape you are the less recovery time. It's interesting watching people's reactions, I ponder what they are thinking when they see a young 22 year old girl (dressed as a cool chic! haha) walking around with oxygen...I should wear a sign, I have a cystic fibrosis, and am waiting for a new gift of life, a double lung transplant. Organ Donation saves lives. "Don't take your organs to heaven, heaven knows we need them here", something to that effect. Then they wouldn't have to ponder anymore. They would know.
I used to dread whenever I would get sick in the past 6 months and require oxygen...now I don't really mind walking around with it, I guess I'm past that point...I just want these new lungs. I want to start living again. Today me and my mom were brainstorming for post tx when I will open up my own clothing store, where Hattitude jewellery will be sold as well. It's going to be so much fun. I really cannot wait, because it is something I was never going to be able to do prior to a lung transplant. Maybe that it something I will start to plan and write, a business plan for my new store. Any ideas for the store name? They say waiting is the worst part for new lungs, and writing a business plan might be a nice distraction. This Friday I will officially be listed.
Sunday, May 16, 2010
I have the worlds best family. period.
I got to go home on a day pass today. I miss my home. It has been 10 days since I have been there. ALREADY everything has changed. Everything is SO green. The driveway is completely filled in with leaves, my apartment is SO much darker due to all the leaves on the trees, and my cat, believe it or not is thinner! She must be super depressed and not eating since I've been away. Poor kitty cat. I had a nap at home today, and usually she sleeps at my feet, but today she had to sleep right near my head. She misses me a ton, I think.
The weather was beautiful today, even when I came back to hospital tonight, My nurse was like "oh you got some sun!" (I must soak it up so easily, because I thought I sat under the umbrella for most of the afternoon!) My little brother, pa and ma and I sat outside for lunch. My Grandma came up after church for a little visit too. We are teaching her to text message, so she and me have been corresponding through text's. She is getting good at it! Next stop a computer for her!
I am still feeling a bit of pain today in my lungs, well this evening, always in the evening it gets worse. I will have to ask the doctor what exactly is going on tomorrow. So far have not needed any tylenol 3's today. Just lots of advil. I'm not sure when I will be able to go home...I do not feel well enough yet to leave the hospital (imagine me saying that!) Maybe they will switch medicine tomorrow, and I'll be able to get more stable so I can go home. We shall see what the plan is tomorrow. Good news, back to physiotherapy tomorrow. i have missed having my lungs clapped twice a day, it really is the most effective at getting all the mucus out! Although my poor ribs needed a break this weekend from it.
These photos are from my families surprise to me today. It was SO wonderful. I live in an apartment off of my parents house. It's nice because I get some independence yet when I'm sick or need assistance (or food? haha) my family is still right there in the main part of the house. Since I've been living in the apartment when I moved back from School for almost a year, me and all my guests who come over have still had to use the my parents front door, walk through their laundry room, and then in through my closet to get to my apartment. Well today, no more!!!
I pulled up in the car with my dad with my day pass from the hospital, and I see a mailbox, with "hattitude" painted on the side (my jewellery company is called You've Got Hattitude) and an old milk can from my grandpa's farm, with a pot of flowers on it at the start of a path, going up to MY apartment front door.
As if that wasn't enough! But I get out of the car and my younger brother has put in a flagstone walkway for me! It was beautiful. 
He designed the whole thing, laid it out on the driveway and then transferred it to the walkway that he cleared to my front porch of my apartment. So today I was able to use MY very own front door. sigh. it was wonderful. Thanks little brother. I love you! Thanks mom and dad! Thanks for the day. Give beau beau a hug for me! I miss her already.
The weather was beautiful today, even when I came back to hospital tonight, My nurse was like "oh you got some sun!" (I must soak it up so easily, because I thought I sat under the umbrella for most of the afternoon!) My little brother, pa and ma and I sat outside for lunch. My Grandma came up after church for a little visit too. We are teaching her to text message, so she and me have been corresponding through text's. She is getting good at it! Next stop a computer for her!
I am still feeling a bit of pain today in my lungs, well this evening, always in the evening it gets worse. I will have to ask the doctor what exactly is going on tomorrow. So far have not needed any tylenol 3's today. Just lots of advil. I'm not sure when I will be able to go home...I do not feel well enough yet to leave the hospital (imagine me saying that!) Maybe they will switch medicine tomorrow, and I'll be able to get more stable so I can go home. We shall see what the plan is tomorrow. Good news, back to physiotherapy tomorrow. i have missed having my lungs clapped twice a day, it really is the most effective at getting all the mucus out! Although my poor ribs needed a break this weekend from it.
These photos are from my families surprise to me today. It was SO wonderful. I live in an apartment off of my parents house. It's nice because I get some independence yet when I'm sick or need assistance (or food? haha) my family is still right there in the main part of the house. Since I've been living in the apartment when I moved back from School for almost a year, me and all my guests who come over have still had to use the my parents front door, walk through their laundry room, and then in through my closet to get to my apartment. Well today, no more!!!
I pulled up in the car with my dad with my day pass from the hospital, and I see a mailbox, with "hattitude" painted on the side (my jewellery company is called You've Got Hattitude) and an old milk can from my grandpa's farm, with a pot of flowers on it at the start of a path, going up to MY apartment front door.
As if that wasn't enough! But I get out of the car and my younger brother has put in a flagstone walkway for me! It was beautiful. 
He designed the whole thing, laid it out on the driveway and then transferred it to the walkway that he cleared to my front porch of my apartment. So today I was able to use MY very own front door. sigh. it was wonderful. Thanks little brother. I love you! Thanks mom and dad! Thanks for the day. Give beau beau a hug for me! I miss her already.
Friday, May 14, 2010
fractured rib? no...thank gosh!
okay so for the past couple days I've had discomfort in my lower left lungs, all part of the disease I guess, mucus plugs, etc. and just basically these lungs tellin' me it's time for some stand ins!
But yesterday something changed, and if you pushed on my one side, I would cry out in pain, and if I coughed or did anything, I was in SOOO much pain. It was honestly soo bad, such pain, scale of 1 to 10, 10 being the worst pain imaginable, it was an 8. So they thought I might have a fractured rib. (are you kidding me...soo did not need that!) Since I'm on such a high steroid dose, I am border line osteoporosis, my bones are more brittle from this drug, I've been getting chest percussion done twice a day on me for the past two weeks, pounding my lungs to loosen the thick sticky mucus , making it easier to cough up, I've also been coughing up a storm after these sessions, they've really been working! all these factors though contribute to fractured ribs! So I might have had a fracture rib or two and was put on tylenol 2's for the pain.
Anyways so I went to bed last night, after the pain was under control and I was able to do a bit of physio to keep the mucus clearing, I laid perfectly still ALL night, even to the point where some of my body parts got pins and needles in them, haha, but I woke up to almost no pain! scale of 1 to 10...a definite 1, slight discomfort. Good news, no fractured rib, just incredibly sore muscles, and mucus plugs and yes a little of warning from these lungs saying, we're ready to leave you now haha we're sore and tired, and done.
Tonight I have a bit of pain under my chest, if I hold it tight with a pillow against it while I cough, it's tolerable. Half hour and then I can take some more pain meds.....
I am feeling better though on the whole. More energy, less weak, getting stable so I hope I am able to go home next week...although with this whole rib pain fiasco who knows!
I also got told on Friday (it's been a whirlwind 24 hours) that I should mentally prepare myself for my new lungs to come quicker then 3 months....I was thinking it would take a least 3 months, and I thought that was being generous and quick!....but the dietitian who I was talking with casually over morning weigh in, was like "oh no, status 2 moves quick!" I mean she's like "it still could be 3 months, you never know, but you should totally be prepared mentally for it to be sooner. We had one guy, who was listed, and then 5 days later, he got the call, he called them back and said 'hey this is a bit quick, could I have a few more weeks' haha he was joking of course...sort of. but still, just mentally prepare yourself just in case, cause status 2's do go quick."
Wouldn't it be wicked if I was transplanted in June, recuperated and able to go to the fashion show for CF in August that we've been working on still!
After the initial shock wore off of being told that it could be REAL soon, it is just excitement, because after all who are we kidding...patience has never been my strong suite. In fact it is probably one of my worst qualities...I am not patient at all. so waiting is going to be the toughest part.
Another thing to add to the last 24 hours of news! Never a dull moment in the hospital, my cystic sista (check out her blog by clicking here) decided that she needed an IV tune up! So she came in to hospital on friday! RIGHT down the hall from me! so close yet so far L! I told her copy cating was the biggest form of flattery but really she did not need to show me that she loved me THAT much by getting admitted to hospital herself! haha
She tells me that she is getting a flat screen tv in her room tomorrow...I told her I am too cheap to pay for television and therefore could she skype me in on her webcam so I can watch tv via my room with her. hahah...technology eh? gotta love it! If we can't hang out (due to infection control issues) it's at least comforting knowing she's just a few doors down, and we can skype each other and even watch the same television shows on her fancy new tv via webcam! lucky duck. Sure she moves in to "the hole" and she gets a bigger fridge AND a flat screen..way to steal all the good stuff L! haha
But yesterday something changed, and if you pushed on my one side, I would cry out in pain, and if I coughed or did anything, I was in SOOO much pain. It was honestly soo bad, such pain, scale of 1 to 10, 10 being the worst pain imaginable, it was an 8. So they thought I might have a fractured rib. (are you kidding me...soo did not need that!) Since I'm on such a high steroid dose, I am border line osteoporosis, my bones are more brittle from this drug, I've been getting chest percussion done twice a day on me for the past two weeks, pounding my lungs to loosen the thick sticky mucus , making it easier to cough up, I've also been coughing up a storm after these sessions, they've really been working! all these factors though contribute to fractured ribs! So I might have had a fracture rib or two and was put on tylenol 2's for the pain.
Anyways so I went to bed last night, after the pain was under control and I was able to do a bit of physio to keep the mucus clearing, I laid perfectly still ALL night, even to the point where some of my body parts got pins and needles in them, haha, but I woke up to almost no pain! scale of 1 to 10...a definite 1, slight discomfort. Good news, no fractured rib, just incredibly sore muscles, and mucus plugs and yes a little of warning from these lungs saying, we're ready to leave you now haha we're sore and tired, and done.
Tonight I have a bit of pain under my chest, if I hold it tight with a pillow against it while I cough, it's tolerable. Half hour and then I can take some more pain meds.....
I am feeling better though on the whole. More energy, less weak, getting stable so I hope I am able to go home next week...although with this whole rib pain fiasco who knows!
I also got told on Friday (it's been a whirlwind 24 hours) that I should mentally prepare myself for my new lungs to come quicker then 3 months....I was thinking it would take a least 3 months, and I thought that was being generous and quick!....but the dietitian who I was talking with casually over morning weigh in, was like "oh no, status 2 moves quick!" I mean she's like "it still could be 3 months, you never know, but you should totally be prepared mentally for it to be sooner. We had one guy, who was listed, and then 5 days later, he got the call, he called them back and said 'hey this is a bit quick, could I have a few more weeks' haha he was joking of course...sort of. but still, just mentally prepare yourself just in case, cause status 2's do go quick."
Wouldn't it be wicked if I was transplanted in June, recuperated and able to go to the fashion show for CF in August that we've been working on still!
After the initial shock wore off of being told that it could be REAL soon, it is just excitement, because after all who are we kidding...patience has never been my strong suite. In fact it is probably one of my worst qualities...I am not patient at all. so waiting is going to be the toughest part.
Another thing to add to the last 24 hours of news! Never a dull moment in the hospital, my cystic sista (check out her blog by clicking here) decided that she needed an IV tune up! So she came in to hospital on friday! RIGHT down the hall from me! so close yet so far L! I told her copy cating was the biggest form of flattery but really she did not need to show me that she loved me THAT much by getting admitted to hospital herself! haha
She tells me that she is getting a flat screen tv in her room tomorrow...I told her I am too cheap to pay for television and therefore could she skype me in on her webcam so I can watch tv via my room with her. hahah...technology eh? gotta love it! If we can't hang out (due to infection control issues) it's at least comforting knowing she's just a few doors down, and we can skype each other and even watch the same television shows on her fancy new tv via webcam! lucky duck. Sure she moves in to "the hole" and she gets a bigger fridge AND a flat screen..way to steal all the good stuff L! haha
Thursday, May 13, 2010
cab rides
I am looking forward, post tx, on all the money I will save from no more cab rides.
I am walking EVERYWHERE.... even in the rain.
I am walking EVERYWHERE.... even in the rain.
Tuesday, May 11, 2010
the man who gives the gift of breath...
This is an amazingly inspiring article. If you have doubts or are scared, just read this article. Hopefully some of your fears will be stroked, calmed and less worrisome, knowing this guy and his team, got my back. ha http://www.healthzone.ca/health/newsfeatures/article/768887--the-man-who-gives-the-gift-of-breath
This man, is part of the TGH crew. Here's hoping I get him as a surgeon, although I think they are all pretty great over there! Here's to research and modern medicine. Thank goodness!
Well a little update, today I did a six minute walk, my legs gave out at the end...weird? yes? I thought so! and was a bit embarrassed! ahah I guess all the lactic acid build up, and then sitting in a hospital for a week, with only the stationary bike to peddle on...did me in. I guess bootin' it for 6 minutes as fast as you can while they measure your meters meant that at the end of it...down went hattie haha...that's just me though, give it all or go home right? haha
Anyways the good news, I beat my meters from January! woo. AND I was wheeling a 20 pound (well felt like it) oxygen cart behind me while I did it! I mean really though, people who need O2 are not able to pull that thing around...what are they thinking really? It's like half the size of me, I've never seen anything so ridiculous for people who need O2 it's dumb.
I am still overwhelmed by the kind emails I get every day, from all sorts of different people! Even one of my best friend, my cystic sista's grandpa has been emailing me! shout out to L's GRAMPS! haha There really are truly some wonderful people in this world!
My aunt and uncle took me and my parents out for dinner to a GREAT restaurant last night. My Aunt was talking about how lonely it is for some people, one woman she knows, is very lonely despite having money....money can't buy you happiness...because sometimes at the end of the day, like that woman...you still end up eating dinner alone. I am so thankful that I never have to eat dinner alone.(or if I do eat dinner alone, it's by my own choice...I just need some hattie time! ha)
So thank you everyone for never letting me eat dinner alone!
This man, is part of the TGH crew. Here's hoping I get him as a surgeon, although I think they are all pretty great over there! Here's to research and modern medicine. Thank goodness!
Well a little update, today I did a six minute walk, my legs gave out at the end...weird? yes? I thought so! and was a bit embarrassed! ahah I guess all the lactic acid build up, and then sitting in a hospital for a week, with only the stationary bike to peddle on...did me in. I guess bootin' it for 6 minutes as fast as you can while they measure your meters meant that at the end of it...down went hattie haha...that's just me though, give it all or go home right? haha
Anyways the good news, I beat my meters from January! woo. AND I was wheeling a 20 pound (well felt like it) oxygen cart behind me while I did it! I mean really though, people who need O2 are not able to pull that thing around...what are they thinking really? It's like half the size of me, I've never seen anything so ridiculous for people who need O2 it's dumb.
I am still overwhelmed by the kind emails I get every day, from all sorts of different people! Even one of my best friend, my cystic sista's grandpa has been emailing me! shout out to L's GRAMPS! haha There really are truly some wonderful people in this world!
My aunt and uncle took me and my parents out for dinner to a GREAT restaurant last night. My Aunt was talking about how lonely it is for some people, one woman she knows, is very lonely despite having money....money can't buy you happiness...because sometimes at the end of the day, like that woman...you still end up eating dinner alone. I am so thankful that I never have to eat dinner alone.(or if I do eat dinner alone, it's by my own choice...I just need some hattie time! ha)
So thank you everyone for never letting me eat dinner alone!
Monday, May 10, 2010
talking to the doc...
Okay so today I got the big boss Doc. She came in during my physiotherapy treatment and talked to me about the whole process of transplant. She explained to me that either this Thursday or FOR SURE next Thursday I would be discussed with all the team memebers from both hospitals, and then put on the list...soooo by next Thursday I guess I'll be active on the transplant list she said, as long as nothing goes wrong from the other hospital's end.
Then she discussed with me how there is two status. Status 1 is for people who can afford to wait a year for a transplant...and then there is status 2, the more urgent. So if lungs come up that are the right blood type and the correct size...people on status 2 get them. She said that she is going to recommend that I be put on status 2 list. say WHAT??.....did not see that one coming. I must keep myself well enclosed in a bubble I guess? Just how sick am I? I guess sick enough that I don't have a year to wait for new lungs. Status 2 is for people who are always on IV, with as low lung function as me etc. Scary to think that. I was saying to my mama today, man do we keep gettin' thrown things, left, right and centre, one thing after another...I feel as if we are not prepared. I've enclosed myself in a bubble, but it's a coping mechanism I use I suppose.
Anyways after the initial tears, and shock of being told your going to be listed at status 2, I sat back and thought, well GOOD. Who the hell wants to wait a year for new lungs? It's almost like not even being listed when your at status 1 it seems, since someone else will always probably get the lungs before you on the status 2 list. If I'm going to get new lungs, I might as well get 'er done now! What's the point in waiting in limbo? It also means I will hopefully get new lungs in the warmer months, since they break your sternum during surgery (yes that is one of my biggest ick factors about the whole thing, I have a thing with my sternum!) you cannot really get cold afterwards, or apparently it is AWFUL for your sternum. So all good things, I will probably/hopefully get transplanted in the warmer months, and be all better in tip top shape, and recovered for my champagne birthday, 23 years old on the 23rd day of December! Me and my friend N already planned out my b-day party. Hope all my girls like tea? haha
sigh...well so that's that I guess. Oh I also got from my cousin and Aunt a lovely little angel of courage
Then she discussed with me how there is two status. Status 1 is for people who can afford to wait a year for a transplant...and then there is status 2, the more urgent. So if lungs come up that are the right blood type and the correct size...people on status 2 get them. She said that she is going to recommend that I be put on status 2 list. say WHAT??.....did not see that one coming. I must keep myself well enclosed in a bubble I guess? Just how sick am I? I guess sick enough that I don't have a year to wait for new lungs. Status 2 is for people who are always on IV, with as low lung function as me etc. Scary to think that. I was saying to my mama today, man do we keep gettin' thrown things, left, right and centre, one thing after another...I feel as if we are not prepared. I've enclosed myself in a bubble, but it's a coping mechanism I use I suppose.
Anyways after the initial tears, and shock of being told your going to be listed at status 2, I sat back and thought, well GOOD. Who the hell wants to wait a year for new lungs? It's almost like not even being listed when your at status 1 it seems, since someone else will always probably get the lungs before you on the status 2 list. If I'm going to get new lungs, I might as well get 'er done now! What's the point in waiting in limbo? It also means I will hopefully get new lungs in the warmer months, since they break your sternum during surgery (yes that is one of my biggest ick factors about the whole thing, I have a thing with my sternum!) you cannot really get cold afterwards, or apparently it is AWFUL for your sternum. So all good things, I will probably/hopefully get transplanted in the warmer months, and be all better in tip top shape, and recovered for my champagne birthday, 23 years old on the 23rd day of December! Me and my friend N already planned out my b-day party. Hope all my girls like tea? haha
sigh...well so that's that I guess. Oh I also got from my cousin and Aunt a lovely little angel of courage
"when life tosses you a challenge,
or maybe a few.
And you have to decide just what you
should or shouldn't do
This "thoughtful" little angel will be right here to help you
Spread your wings with courage so you
can do what you must do
To follow your hopes and dreams
and make them all come true!"
or maybe a few.
And you have to decide just what you
should or shouldn't do
This "thoughtful" little angel will be right here to help you
Spread your wings with courage so you
can do what you must do
To follow your hopes and dreams
and make them all come true!"
Friday, May 7, 2010
best friends
you know you have a best friend, a sister by choice, when they offer to carry your oxygen container for you. :)
Getting Listed.
So as some of you already know from the email I sent out, I decided to get listed to get a double lung transplant last Tuesday. I was admitted to hospital on Tuesday evening, as I just was feeling totally so crummy. I usually do my IV's at home but I need some TLC from the hospital. I just was not able to do it anymore at home. I was exhausted, and had lost my zip. To lose one's zip is a horrible feeling...
On Tuesday one of the techs doing my breathing test who is not really one of the regular's I see, who is a little more shy, a little more reserved, (which I USED to mistake for being a sour grump face) and does not come bouncing in to the room all smiles, (I make it my secret challenge to try to get him to smile or laugh by the end of my breathing test each time I see him) so he has gotten used to me, and even cracks smiles now and talks to me more over the past year since I started my secret little challenge, but on Tuesday even HE said this to me "oh you're not your usual peppy self"....as soon as even he said that, I knew I needed help. Things were not good. All my energy was zapped. I felt like a quarter of the person that I am....and that is not a fun feeling at all. Which again just reconfirmed everything, that I needed to go in to hospital and get help, and that yes we were making the right decision to get listed. Over the past year as I look back, slowly but steadily things kept changing. I would miss lunch dates with friends, simply because of my lack of energy. It sneaks up on you though, you never really think about just how sick your getting until it's pointed out to you, you just kind of accept it and go with the flow, you adapt and don't really realize just how sick you are until, you look back in hindsight. I guess its a way of coping.
I'm currently sitting in the hospital, yawning, as they did an over night oximetry test on me, to see if I needed oxygen while I sleep, Every time the little finger thing fell off in the night, the alarm would bleep something horrendous! Not to mention I swear the city noises are getting louder by the day here!
I did a walking test yesterday and when I go on long walks, other then just around my house, I now require Oxygen walking around. Kind of a bummer...well no...total bummer, but I guess that's to be expected. These lungs are slowly failing. I'm glad I'm getting new ones. With CF, I think one of the only positive things about having it, is no one can really tell how sick you are from the outside. Throw on oxygen on your face and it's a whole different ball game. Now everyone knows just how sick you are, you stick out, you get noticed. It's a different type of game now.
I'm really excited to get these new lungs. I can't really walk very far at all now, without getting winded and sucking in air. I hate that feeling. It's so weird to think that I cannot even walk down the hall way without sucking in deep breaths of air over and over, trying to catch my breath. Isn't it odd how your body can turn on you? It's also odd just how FAST your body can turn on you. I hope I don't keep declining quickly, because that is scary in itself not being able to hold on long enough until you get your new lungs. It's also going to kind of suck living in this limbo world for a year if it takes that long to get new lungs....At least my cottage is within distance of the transplant hospital so I will be able to go up there during the summer and wait! Another plus!
Okay but enough about all the negative things! I just keep dreaming about all the positive things that will happen to me post tx. I am going to climb the CN tower, thats for sure. Looking at it last night, totally I am climbin' that baby. We went out for dinner last night to a Chinese restaurant on the lake. It was beautiful. I kept looking out the window and on the boardwalk there were all these people running...running AND talking to their running partners while running...I kept sitting there thinking, "soon enough hattie, soon enough. just you wait. That'll be you soon!" I am also going to go swimming again! Real swimming. I'm going to drag one of my best friends out to a swim team again like I did to her in highschool, (Q you don't know it yet, but it's a comin' so start practicing! hahah cause soon I'm going to whip your butt) Q sent me some lovely flowers yesterday to my hospital room. They are the most beautiful bouquet I have ever seen! So interesting, everyone keeps going up and touching them, and looking at them, cause they're just so unique, they don't quite believe they're real haha. I of course bawled my eyes out as soon as I got them, not only because they are blindingly beautiful, but because I am so overwhelmed with the tons and tons of emails, texts and thoughts coming my way by everyone in the world that I love. I am even getting emails from NZ and Europe...the world is enveloped literally in a big old bubble of positive love energy coming my way. I can't lose.
I am also going to go on trips where hiking is an absolute must post tx. I've been planning with my mama the first trip I'm going to take post tx. Hiking and walking is top priority. I'll actually be able to go on walking tours, and enjoy them? instead of dreading every step! It kind of seems surreal to type that, and think about it. I am getting goosebumps and butterflies in my stomach thinking about it! I'm probably just never ever going to stop!
Everyone has been sending me THE BEST emails and texts ever. I don't think I could be going through this whole process without all the support I've been getting. It's amazing. Thank you for all the kind words, energy, and vibes! Physio therapist is coming in soon though, so I have to get going. I was suppose to watch the marriage ref last night so we could discuss it while she pounded my back to loosen all the mucus, but I totally forgot to watch! ahah I will say one thing though, I'm glad I signed my family up for Rogers PVR before I came in to the hospital...so I don't have to miss LOST, the Office, or Parks and Rec! haha...a girl has to have her priorities straight right?
On Tuesday one of the techs doing my breathing test who is not really one of the regular's I see, who is a little more shy, a little more reserved, (which I USED to mistake for being a sour grump face) and does not come bouncing in to the room all smiles, (I make it my secret challenge to try to get him to smile or laugh by the end of my breathing test each time I see him) so he has gotten used to me, and even cracks smiles now and talks to me more over the past year since I started my secret little challenge, but on Tuesday even HE said this to me "oh you're not your usual peppy self"....as soon as even he said that, I knew I needed help. Things were not good. All my energy was zapped. I felt like a quarter of the person that I am....and that is not a fun feeling at all. Which again just reconfirmed everything, that I needed to go in to hospital and get help, and that yes we were making the right decision to get listed. Over the past year as I look back, slowly but steadily things kept changing. I would miss lunch dates with friends, simply because of my lack of energy. It sneaks up on you though, you never really think about just how sick your getting until it's pointed out to you, you just kind of accept it and go with the flow, you adapt and don't really realize just how sick you are until, you look back in hindsight. I guess its a way of coping.
I'm currently sitting in the hospital, yawning, as they did an over night oximetry test on me, to see if I needed oxygen while I sleep, Every time the little finger thing fell off in the night, the alarm would bleep something horrendous! Not to mention I swear the city noises are getting louder by the day here!
I did a walking test yesterday and when I go on long walks, other then just around my house, I now require Oxygen walking around. Kind of a bummer...well no...total bummer, but I guess that's to be expected. These lungs are slowly failing. I'm glad I'm getting new ones. With CF, I think one of the only positive things about having it, is no one can really tell how sick you are from the outside. Throw on oxygen on your face and it's a whole different ball game. Now everyone knows just how sick you are, you stick out, you get noticed. It's a different type of game now.
I'm really excited to get these new lungs. I can't really walk very far at all now, without getting winded and sucking in air. I hate that feeling. It's so weird to think that I cannot even walk down the hall way without sucking in deep breaths of air over and over, trying to catch my breath. Isn't it odd how your body can turn on you? It's also odd just how FAST your body can turn on you. I hope I don't keep declining quickly, because that is scary in itself not being able to hold on long enough until you get your new lungs. It's also going to kind of suck living in this limbo world for a year if it takes that long to get new lungs....At least my cottage is within distance of the transplant hospital so I will be able to go up there during the summer and wait! Another plus!
Okay but enough about all the negative things! I just keep dreaming about all the positive things that will happen to me post tx. I am going to climb the CN tower, thats for sure. Looking at it last night, totally I am climbin' that baby. We went out for dinner last night to a Chinese restaurant on the lake. It was beautiful. I kept looking out the window and on the boardwalk there were all these people running...running AND talking to their running partners while running...I kept sitting there thinking, "soon enough hattie, soon enough. just you wait. That'll be you soon!" I am also going to go swimming again! Real swimming. I'm going to drag one of my best friends out to a swim team again like I did to her in highschool, (Q you don't know it yet, but it's a comin' so start practicing! hahah cause soon I'm going to whip your butt) Q sent me some lovely flowers yesterday to my hospital room. They are the most beautiful bouquet I have ever seen! So interesting, everyone keeps going up and touching them, and looking at them, cause they're just so unique, they don't quite believe they're real haha. I of course bawled my eyes out as soon as I got them, not only because they are blindingly beautiful, but because I am so overwhelmed with the tons and tons of emails, texts and thoughts coming my way by everyone in the world that I love. I am even getting emails from NZ and Europe...the world is enveloped literally in a big old bubble of positive love energy coming my way. I can't lose.
I am also going to go on trips where hiking is an absolute must post tx. I've been planning with my mama the first trip I'm going to take post tx. Hiking and walking is top priority. I'll actually be able to go on walking tours, and enjoy them? instead of dreading every step! It kind of seems surreal to type that, and think about it. I am getting goosebumps and butterflies in my stomach thinking about it! I'm probably just never ever going to stop!
Everyone has been sending me THE BEST emails and texts ever. I don't think I could be going through this whole process without all the support I've been getting. It's amazing. Thank you for all the kind words, energy, and vibes! Physio therapist is coming in soon though, so I have to get going. I was suppose to watch the marriage ref last night so we could discuss it while she pounded my back to loosen all the mucus, but I totally forgot to watch! ahah I will say one thing though, I'm glad I signed my family up for Rogers PVR before I came in to the hospital...so I don't have to miss LOST, the Office, or Parks and Rec! haha...a girl has to have her priorities straight right?
Thursday, May 6, 2010
fortune cookie.
I've been meaning to write a post for awhile. I keep opening and closing this browser. I'm too tired tonight to properly articulate myself....but I will write this, tonight at dinner, my fortune cookie said this "Dont' give up. The best is yet to come." wow. meant to be.I am making the right choice.
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