The Secret World of Status 3

Hey everyone, this is Hattie's "cystic cyster" L.

No, Hattie has not got the call yet--we are still anxiously waiting on that--but our girl was simply too emotionally and physically drained today to update the blog herself, so I will be her hands and relay the messages she text me this afternoon.

Yesterday was very hard for Hattie and it wasn't any easier today. Clinic was surprisingly not busy and she was pleased to see the head honcho, Dr. T. And there it was confirmed: the new med combo is not working. Her pfts have continued to decrease and are now sitting at 15% and her WBC has risen to 20, from 17 last week. The doctors decided (and Hattie even messaged me this in anticipation of it happening) that she is 'rapidly deteriorating' and will be moved up to the 'secret' third status list.

Unfortunately, for now she must also stay in the hospital again, at least until they try a new drug combo and confirm it is working (they are trying piptazo and colistin). Following her last, er, memorable hospital stay, she was not too enthused but she also accepted that--realistically--it's not wise for her to go home at this point in time. On the upside, she is staying in my old room with the giant fridge and freakishly huge washroom and her Mom will be staying with her tonight. The entire fam jam will also be coming down for her Mom's birthday tonight too.

It's all very scary for Hattie and her family now, so they are asking for all your super-charged-positive-vibes! Let's start visualizing those new lungs!

- Lindsay

at what point?

I'm getting scared.
Today I can't do anything. I went for a walk, if you want to call it that, around the property to stretch my legs with my mom, and I now look like a feeble crippled person. The type you see in physio who are just so fatigued, sick and old.
It's getting harder and harder. My white blood cell count has been rising all week...meaning infection and I've started coughing up a bit of blood again...I'm getting scared. At what point do your lungs stop working? I'm down to 17% lung function, and each week, it keeps going in the wrong direction.... Things are not keeping stable. This is a scary game to play.
I need some reassurance from the doctors tomorrow. I called them today, and we'll do all the regular tests tomorrow at clinic...Lungs, where are you? I really, really, really, need you now...
Old lungs, please keep breathing...please keep pumping, just a little bit longer, the new ones are coming, they are, they are. please come soon.

a photo

Here is one of the photos that a friend of mine took of me about a month or so ago back in hospital when she came in for the afternoon to do a shoot.
As us CF'ers so often get "but you don't look sick"...and as my cystic cyster said about me "yeah just because you're dying, does not mean you have to dress like you are" haha...well said L...so here is the photo of me....Thanks R. beautiful...for what it is? if it can be pretty? haha
wait till after TX photos...those are gonna be somethin'!

this time next year...

.......This will all be a distant memory.
The humming of the oxygen concentrator, the lugging of the IV pole, the beeping, the mixing of the IV drugs, the constant physio percussions, the coughing, the aching, the breathlessness, the tiredness, the uselessness.....all a thing of the past this time next year. It's just for right now that life is harder then anything.
The good thing is...I'm not rapidly declining...slowly though things are starting to chip away...I just really have to keep my eye on the prize and be thankful that I get to wait at home...but sigh...sometimes you just have to say this sucks SOOOO much.

But on some good news front...The Mainstreet Pub Strut for Cure raised over $4,500 to help find a cure for CF!
Lather up for Lungs Car Wash raised 800 dollars for the CCFF! woo. way to go my enthusiastic, amazing, inspirational friends! Truly...are they not amazing? They are. They are. I still cannot get over just how lucky I am. Everyone is waiting along side with me! As one of my friends said to me the other day "support system Hattie...more like support Army" haha, looove it.

The girls on the committee were also featured on the front page of our paper again this week! Check out the article below or click here for the online link.

First fundraiser a ery success
Thursday June 24 2010 By Matthew Strader, Enterprise Staff

(Above) Rachael Grice played auctioneer for firefighters Ric Stalteri, David Chamberlain, Steven South, Kevin Marden, Daniel Hamlet and Neil Gordon of Station 302. The men were auctioned off to do yard work for their buyers - missing from photo are Jim McDonald and Dave Smith. (Middle) Brenda Alderdice purchased Marden for car washing, lawn mowing and possible pool cleaning. (Below) The real stars of the show were the girls volunteering their time and effort. Carly Gordon, Natasha Sicondolfo, Quinn McCutcheon, Rachael Grice, Lauren Walkowiak, Tasha Potter, Nikki Bettinelli, Kim Alderdice, Katie Alderdice and Alana Litz. Matthew Strader photoS

A group of local girls working together to raise money for Cystic Fibrosis (CF) in the name of their friend, and CF sufferer, Hattie Dunstan, held their first fundraiser on June 17 raking in more than $4,000, with approximately 250 Caledon residents in attendance to support their cause.

“It was a great way to kick off the summer for Hattie,” said Kim Alderdice. “Everyone could not stop talking about the event the next day. No one wanted to leave that night.”

The first event was the Mainstreet STRUT, a night of auctions, cocktails, dancing and, yes, strutting.

Eight Caledon firefighters from station 302 donated two hours of yard work services each to the cause and saw themselves bid on by eager Caledon residents to begin the festivities.

The highest bid of the evening – a whopping $500.

Two of the eight firemen could not attend the event, but also garnered a few hundred dollars simply with the promise of performing the yard work.

The generous firemen also auctioned off a ride along in a fire truck.

Later in the evening, volunteers were invited to compete for a piece of Hattitude jewelry, from the personal designs of Hattie Dunstan, and a gift card from The Beer Store.

The competition was the highlight of the evening as girls in boxers and boys in four-inch stilettos took to the runway in a satiric fashion show that was, “A sight to see,” according to Alderdice.

Next up for the girls will be three more dates at the Caledon farmers’ market in Bolton, dubbed “Strut on a runway and Sponsor”. Here they will offer a red carpet, a dress up box and costume jewelry for kids, with pieces for the children to take home.

The mission is to give children a chance to strut the red carpet and educate about CF and organ donation.

The crew will be at the Market today (June 24), July 1 and July 8.

Also planned for the summer are two charity car washes, with the first beginning today. Interested donators can have their car washed from 10 a.m. to 1 p.m., or 3 p.m. to 7 p.m. at the Glen Eagle location.

The girls will also be seen around the Town selling roses at various stops during the summer. Just look for the CF sign, and the smiles.

And the highlight of the summer will be the Couture Fashion for a Cure Found fashion show that will take place at Glen Eagle Golf Club on August 26. Tickets are on sale for the event, for $40 a piece, and can be obtained at the various events, or by calling Alderdice at (647) 273-7033.

The total raised at the first event was $4,604.93.

The girls are hoping to add to that and achieve 1,000 newly signed donor forms by the end of the summer.

You can keep up with their events by visiting: www.cfforcf.com, or www.fashionforacure.org.

Lather up for Lungs

If your car needs a wash today and you want to donate to charity! Check this out! The girls on the Couture Fashion for a Cure Found committee are putting this on!

Lather Up for Lungs Car Wash

Does your car need a little tender loving care by some lovely, sudsy ladies?

Check out Glen Eagle Golf Club, off Highway 50 between Bolton and Palgrave, tomorrow, Thursday from 10-1 or 3-7!
...
All proceeds go towards the Canadian Cystic Fibrosis Foundation.

Together lets make CF stand for Cure Found...

See you there and get ready to get wet!

uncomfortable

I'm so uncomfy...my head aches, i have cotton mouth, sooo dry all the time! my body temperature is all over the map, my back aches, my stomach is protruding, the humidity in the air is so thick, my ears hurts from oxygen prongs....I am very very very uncomfortable...sigh.
Lungs please come soon....in my next life...shot gun being a cat? yes. I think so. Beau Beau sleeping beside me...she is snoring though and not being a good bunk mate.

home....

so I got discharged sort of last night....I went home on a night pass. and then this morning was discharged after homecare was able to see me...
It was a really really stressful Friday.

The doctors switched my drugs, to mero and chloramphenicol, and within 24 hours I noticed a difference, I had my pep back, and was not as lethargic. They took my blood on Friday and my white blood cell count was already down to 13 from 16. phew. Thank goodness these drugs worked. I was able to go to exercise on Friday, but was still really tired, and did not do the whole exercise program. On the floor that I was on, I was not sleeping well...machines beeping, people coming in and out...so Friday afternoon after I got back from exercise they had moved me up to the respiratory floor.
I walk into the private room and it is basically like sharing a room, they have you shoved in to this alcove place, with the other persons doorway 1 foot away, with both our beds right there in front of our doors. It was awful. I found out that the person next door has cepacia (a really horrible bacteria that can wreak havoc on CF lungs) My thoughts and heart goes out to this poor person because they are just doing so awful. They almost died last week....their family is camped out on the floor with their blankets and pillows, it is so sad....cepacia is a horrible horrible bacteria and CF is a wicked disease....

They make people with cepacia and non cepacia come on two different clinic days, so as to not spread the bug. They also have two different nurses for cepacia and non cepacia....I saw which nurse was going in to this persons room, and when I called for my meds, she knocked on my door and was going to come in and give me all of my meds, which she then could have passed on the cepacia bacteria to me...I immediatly started having a panic attack, chest heaved in, hyperventaliating. How could they make this big of a mistake?? They just had an out break two years ago of cepacia that killed 5 people and spread to a few others...how could the front administrative system put down that I was to have the same nurse as a cepacia positive person???

My mom was kind of in shock, like she did not believe that this was happening, she's said"don't come in her, stop stop stop. Is the person next door, not cepacia postive? we are suppose to have a different nurse then positive cepacia's." the nurse was from an agency and said "oh I just had a form, and they told me I'm on these two rooms, I understand, I'll go talk to the front desk"

What if I had not of known that the person next door had cepacia? What if I had not of known which was their nurse? I was trusting the hospital admin. to know that postive and negatives are to have separate nurses. It was an agency nurse (meaning when a regular nurse is sick, they are like supply teachers, supply nurses) but she got her directions and orders from the front desk...who ever screwed that up is in for it. My doctor was losing it, and was just so thankful that I knew the person next door was cepacia positive, and avoided catastrophe... It was a horrible horrible experience. Anyways after that I just could not stay in the hospital. It has been so much stress. I am so thankful that these new meds kicked in quickly and I felt well enough that I could go home and avoid disaster...

the good news. I'm home again, and feeling well on these new meds....

back in the 'hole'

sooo i'm back in the hospital.
yesterday was just not my day. I was feeling unwell all morning, had to miss exercise, and then that afternoon I restarted pulmozyme, and I think maybe that did me in. BIG mistake I think. I was gasping for air and just could not breathe at all, sitting on two liters of oxygen, more then I need for walking normally!
Panicked they got a bed for me, and I came in last night...with a roomate! EW. it was awful. Thankfully this morning, they have me moved to a private room, not on the respirology ward though. I miss all my regular nurses. I hope they find me a bed on the regular ward soon. So silly how they don't have enough beds for everyone. We really need a bigger ward...
Anyways so last night was probably one of the worst nights ever. I will spare you the details of sharing a room with another sick person...shudder. It sucked. Majorly. Gack.

Also it did not help that the nurses here think that sleep is not essential to ones well being of getting better....since they come in to ask you every five seconds, 'have you drank your apple juice, your water, have you peed since i last talked to you?' are you serious lady? I'm not 90 years old. I do not drink apple juice in the middle of the night. I am A. diabetic, B. sleeping? C. stop asking me if I peed...yes I peed. I am getting IV antibiotics pumped through me every 6 hours, of course I peed! goooo away so I can sleep.
I guess they are not used to 22 year olds on this floor.
Also please note, I did not say any of those things to the nurse...I know she is just doing her job, so I grit my teeth, through out some words and keep my eyes shut tight so she will go away haha

Anyways...I'm just stalling time, since again they woke me up super early to change me rooms. I have a private room now. Thank gosh. I think what is left of my sanity would have chipped and cracked away if I had of been left in that double room....shudder.
Mama just arrived. Will update later on what the game plan is after we see the doctor!

mother nature

Doesn't mother nature know there are people waiting for new lungs...and days like today with hot syrup thick like air do not help....
sigh...

Today I had to miss exercising program downtown at the hospital. I just was not feeling well at all. Soo tired, lethargic and lack of energy...my mind was saying go go go, but all I wanted was for someone to carry me from the car back to the house...not a good sign.
I called clinic, told them what was up to keep them in the loop. I coughed up blood in the middle of the night again last night. My white blood cell count was up to 16 yesterday at clinic, from the prior weeks of 12 (under 11 is normal)...there is talk about changing my IV meds...but really there is not many more options to change to...so hopefully the white blood cell was just up for some other reason other then a new infection. Hopefully the shortness of breath, and the tiredness is just from all of this commuting to toronto and as my nurse said to me on the phone at 17% lung function, "you're going to have some bad days"...soo hopefully tomorrow I'll feel better....

Three weeks listed today....I feel as if I have no right to complain, since I know so many wait much longer...but still...I'm tired of wearing oxygen prongs all the time, my ears are starting to hurt. I'm tired of not being able to do things for myself. I'm frustrated. This waiting game is definitely the worst part.

I have however been watching a lot of Glee on Rogers on demand, and I cannot wait to dance and move like those guys, and do it while breathing!
My cyster told me I have to write down all the things I want to do post TX and keep it in my hospital bag for when I get the call.

We met a women who is one year post tx yesterday at clinic. She told us it hurts a lot...I mean it is major surgery, so I was expecting it, but it's still scary to here how much it is going to hurt, but I know that everyone is different, so we shall see. She said when you look in the mirror after, you do not look yourself. You swell up, you bruise, etc. Basically I am thinking that you look and feel like you have gone through a horrible car accident...but as she said she could breathe and she was alive and of course all those things are only temporary. She was so lovely, and so encouraging to see how well she is doing. She is raising her two young toddlers, and working full time again already.
I can't lose sight of the prize. Eye on the prize, eye on the prize. There is a light at the end of the tunnel...and I will not have to be like this forever.

Am I ever glad I have Hattitude to occupy my mind, as well as the Fashion Show.
Last Thursday's mainstreet strut for the cure bar night raised $4,800 dollars for the Canadian Cystic Fibrosis Foundation. AMAZING. I cannot even believe it. I got to see a video for the night,and it looked hillarious! The guy's in stilettos including my baby brother! ahaha He was soo funny strutting his stuff in heels for charity down the runway. The night looked like sooo much fun, and the fire men were oh so cute! goood work girls on auctioning those guys off! haha

a question or two

Here are some questions a girlfriend of mine asked me in an interview for a local paper she writes articles for, connected to our local radio station. She thought it would be good to advertise for our CF Fashion Show by doing a write up....p.s. tickets went on sale Thursday for our Fashion Show and are selling like hot cakes! (where did that saying come from? haha) they're going to go quick so if you want tickets email the committee quick!!

I'm posting some of the questions she asked me and what I wrote back, so that when I print off this blog eventually after transplant for myself... everything will be here in one nice place. So here is the write up.

What is it you love about fashion?
I love being unique. Expressing myself through what I wear just fits! I love one-of-a-kind clothes. I love the feeling you get when you know no one else has what your wearing. I like putting interesting tid bits, matching different things together. I love the hunt.

Where do you get the inspiration for your jewelry line?
All over. Sometimes I will design for myself and my girlfriends or my mom, even my grandma, something that I can see them wearing. Often I’ll be deisgning a piece, and be like “oh so and so will totally love this piece”, and I design with their style and their attitude in mind with that certain necklace. I’ll sometimes pick up an old brooch and I’ll design it to go with a new favourite top that I saw in a magazine. I love designing necklaces to go with outfits, which is why I like doing custom work. I like getting all the information about what a bridesmaid’s personality traits are like, and then seeing the dress she’s going to wear and creating a one-of-a-kind piece just for her outfit.

I also once saw a jar of buttons in a thrift store, and that’s how my latest line “Gorgeous Gal” was spawned. I thought it would be cool to wear vintage buttons. They just don’t make things like they used to anymore. Sometimes something will fall off of my studio desk and on to the floor, and it will land, in just the exact perfect way and then I’ll see a necklace or a bracelet that I could design.

How long will a piece take?
It totally varies on the type of material used, how much of a vision I already have lined up in my head, or whether I am winging it as I’m building it…how tired my fingers are….

What is your fav part of the process in the creation of your line?
The reactions of people. I love seeing the pieces on other people, because then I get to look at them! It’s hard giving them away, since I can never recreate that exact piece again! haha

Where and how can people purchase your stuff?
You can purchase my jewellery online at www.GotHattitude.com or at my studio. I also do home parties, where the hostess gets free jewellery or they can donate 20% of the profits to their favourite charity of choice.

RE: CF
How has living with CF changed your life? Or your view on life?
I always go by the moto, that life is too short, so don’t worry about the small things, just smile. Sometimes if people start talking about their old age or a new wrinkle…I have to remind them, hey, be thankful for that wrinkle, those laugh lines, your aching old knees…it means you are old. Your one of the lucky ones! Embrace your age, because some of us might not get those wrinkles, those laugh lines, those aching old knees…

I think I see things in a bit more straight, since I had to grow up so fast from such a young age. You have to be pretty independent and level headed to deal with all the medications, doctor trips, regimes that are involved with a CF persons care from when I was 6 months old, so I grew up pretty fast as a kid.

Are you ever scared?
I’m not so much scared for the actual operation….more excited for life afterwards. I am scared a little for the unknown for life post transplant. I’m scared of chronic rejection, or infection. Scared that my body will eventually reject these new lungs…transplant is not a cure…merely trading in one diease for another regime…but I have to stay positive and do everything I can to make sure that rejection does not happen.

I’m grateful that CF does not have to kill a person anymore. That there is an option of transplant, where as 20 or 30 years ago, there was never an option of transplant. I’m thankful that Toronto is the number one leading place for transplants in north America and maybe even the world. Modern medicine kind of blows my mind….Not so much scared….more ready.

Last summer when I first went for my transplant assessment, I was very very scared, because back then I was ‘too healthy’ for a transplant, but sick enough to get assessed, my quality of life was still good, so I was scared that they were even thinking about transplanting me then back then….as soon as I started being on oxygen and IV antibiotics ALL the time…my quality of life went…and so did the fear of transplant.. to a certain extent, since any option seems better then life right now.

I’m ready mentally now for this huge operation and whatever challenges it throws me post transplant, only because living breathless, attached to oxygen tubes, IV tubes…isn’t really life anymore…

Is there a cure?
There is no cure for CF…but thankfully there is the option of a transplant. Right now they are also working on growing your own pair of lungs through stem cell research. When I signed the papers with the surgeons, I also signed up for a research study where they take some of my stem cells, which will help them be able to hopefully in 5-10 years grow someone a pair of lungs with their own stem cells, thus eliminating all the risk post transplant, of chronic rejection and infection, the main problem with transplants why our bodies reject the new lungs would be eliminated if they were grown from our own stem cells, our own lungs without the disease CF. Then they would transplant those new grown cells in to the CF patient, and voila, no more CF lungs.

What about this double lung transplant? Will you be able to live normally?

YES YES YES. I cannot wait.

Well I guess that depends on your definition of normal…I guess it will never be ‘normal’? There will always be the fear of rejection and infection from my new lungs. There will always be doctor appts, and blood tests, a few pills and bronchscopies to make sure there is no infection or rejection, but it will be nothing like what I have been dealt with living with CF, and the appts get less and less as time goes on. I have talked to many CF people post transplant and they say they cannot even begin to describe to me what it is like to be able to breathe normally…none of us have ever experienced that pre transplant…to describe it to another CF’er they just can’t. I cannot wait to experience it. I cannot wait to jump out of bed, open a window, go for a walk, climb a few steps, have a shower…all without gasping as if I’m drowning.

How far down the waiting list for a lung transplant are you?
It does not really work so much like a list. It’s based on my blood type and the size of my lungs. They have to be a perfect match. I am listed at status 2, which is the highest most urgent status. So for my blood type and body size…I’m up there…definitnily high priority up there they tell me…now it’s just a matter of waiting for the perfect lungs to come.

How does it feel waiting on a pair of healthy lungs-something that everyone should already have?
It’s tough…but I say to my mom each clinic visit or each time we are thrown a new curve ball from this disease “hey…life would probably be boring if we did not have this challenge right? haha” ...

What is the first thing you’ll do when you get your new lungs?
Ooo good question. I have the longest list ever of things I will do once I have new lungs, go swimming, jump on the bed, climb the CN tower, NEVER use an elevator again, go biking,…as for what is the first thing I will do…I’m not sure….

Well I guess it depends when I get my transplant, if it’s in time for the fashion show, the first thing I’m doing is struttin’ my stuff down the cat walk! haha

What is the hardest part about living with CF?
I think one of the hardest part about living with CF is probably not being able to hang out with other CF people. They’re truly the only ones who know exactly what your going through, but due to bacteria and infections that we might pass back and forth to one another, we are not able to hang out. One of my best friends, has CF so we text, skype and talk on the phone…but it sucks so much that we can never have a cup of tea, or go to the movies together.

What do you do when you are scared or anxious? What calms you down and why?
listening to music, and looking at old photos. Music is the closest thing we have to a time machine I once read, and I believe it. Music transports me to other memories, or life before I got super sick. I like looking at photos as well before I got really sick. Remembering what life was like before I needed oxygen just while standing up out of a chair to get a glass of water, or grabbing a pen from a desk….before I relied on family and friends, to do such tiny little things, like grab a book from a table a few feet away for me because to get up would mean cranking up my oxygen again…friends and family are what get me through this. I have an amazing support system, and I am so grateful for everyone. I don’t know how I got so lucky.

How do you deal with friends and fam who are scared and worried?
That’s probably the tough part…it’s hard seeing your parents upset, hard to see them cry, or worried…but after transplant it’s going to be a whole new world…sometimes my mom says “oh boy Hattie on these crappy lungs is scary with what she does, new lungs and no one is going to be able to keep up!” my mom will have to retire from the ‘health care’ field for awhile after transplant…she’s been in it for 22 years…time for a break!

What is your biggest fear?
Sometimes I fear that I will get much sicker, while waiting for new lungs…I want to remain as strong as possible so that the recovery is much quicker, and easier and more successful. I don’t want to get even more sicker then I am already while I wait…I hope these new lungs come soon…they say “you walk in to surgery, you walk out”…I’m hoping to keep my muscles and strength up, so that things go as smooth as possible.

What is your greatest joy?
The thought of running down the beach in my bare feet at my cottage….running running running. I’m never going to stop.


RE: The Show
Why did you decide on a fashion show for your fundraiser?
Well I always did the great strides walk, the annual CF walk at the zoo. But I’ve done that so many years, I wanted to switch it up. My jewellery was showcased in a fashion show in Guelph for the ‘make a wish’ foundation, and I thought heyy I could do this and raise money for CF! I love fashion, and donate to a good cause. WIN WIN.

What is the goal of this fundraiser?
My goal for this fundraiser is to raise awareness about CF. It’s the most common fatal genetic disease affecting children and young adults in Canada…and no one knows what it is. We look ‘healthy’ on the outside…but we’re struggling to breathe on the inside

I also want to promote organ donation and the dire need for everyone to fill out their cards or talk to their families about what their wishes are. It’s so frustrating that people have do die waiting for organs…you can’t take your organs with you once your gone…so let someone else have a second chance at life.

What kind of events can people look forward to?
The farmers market! Check it out by clicking here! We will be there for four weeks in july, with a strut and sponsor red carpet, massages, and nail painting with all funds going towards the canadian cystic fibrosis foundation to find a cure for CF. We’re also going to be doing car washes at glen eagle golf course and around Bolton as well as selling red roses, the flower for CF around caledon east and orangeville.

Where can people find info on events?

www.CFforCF.com

twitter/CfforCF.com

or our facebook event group Couture Fashion for a Cure Found

two weeks today

Today I have been listed for two weeks. Woo.
I got my new pager in the mail today. I can't believe the first one broke already!

I had exercise today at TGH. The main physiotherapist, said that I'm so motivated and doing an amazing job, and normally they never transfer patients this early or soon to a closer facility to their home, but next week she feels totally confident in transferring me to a rehab centre closer to my home. (I rock? haha) Phew takes so much strain of commuting to the city off of me and my mom! Now we only need to go in twice a week, instead of four times a week.

Today my Uncle drove us down to the city. It was so incredibly kind of him. It was just so nice, because my mom was able to walk me up to the exercise room while he parked the car etc. It was just a much easier smoother day. Although my mom did get fired twice as a the coach today haha

The fashion show is going great. The website will be up soon. We are thinking of creating a foundation after this. It's just so rewarding, and we're having so much fun with it. It's amazing seeing the community and everyone coming together. The world is full of amazing people. I'm so lucky to be surrounded by the best!

Tomorrow is the mainstreet strut for a cure! The pre-fundraising girls on the committee put together a pub night at our local bar in town. I think it's going be a huge success. You can check out the event by clicking here. Everyone is welcome! Half price appetizers from 8-10pm, 5$ special drink, and 10$ cover all going towards the CCFF! They are going to be auctioning off firemen, having a competition of boys in high heels, and girls in boxers with prizes. It's going to be great. I can't wait to see the video from it.

It's really amazing how an idea back in March can spawn. When me and my friend B sat down in my kitchen in the dark of the last remaining month of winter, ...how this fashion show has grown, adapted and just spread like wild fire...I'm a bit in awe of it all, and so grateful that I have this to look forward to, to plan with my best friends, the community, while I wait for my new lungs.

coasting...

Today I had clinic. I am now out of the hospital on home care and doing the IV's myself. My parents are helping me out this time, as they are every 6 hours infused and I just am obviously not able to do that throughout the night. So I was training nurse mom and nurse dad. They are doing a good job, and I am able to sleep much better at night.

My white blood cell count is still 12...so that's stable, no RAGING infection...
My lung function is the worst it has ever been in my life...0.62 liters...9 weeks ago I was 0.83 liters 24%... 18% today, 5 weeks ago 19% 0.71 liters...sigh. But I guess that's why I am getting new lungs right?

I am coughing up more and more blood. Which is not cool. It's always scary...you never really get used to coughing up blood. I hear a gurgle, like something in my chest is giving up, some other part of my lung has decided to stop working, and then a mouthful of blood comes up.
My doctor said, it's kind of like my lungs saying, they're over this, they're done. I got kind of sad....my poor little lungs. They tried their hardest...but now they are really failing. Good bye pretty Hattie lungs....hello stranger, angel, new lungs...

My doctor said today, I am definitely talked about a lot among the CF doctors, and the transplant team, back and forth on emails and meetings, indicating to us that I'm at the top of the status 2 list...kind of scary since that just indicates just how sick I am, not much more room left to go...but again the positive is, it might only be a few weeks, so hopefully I will be re-cooperated for the fashion show we're putting on at the end of august! haha
I guess when the next lungs that fit my blood type and me, they'll be mine? I don't think it will be months, since I just have no where else to go, I am going to be on IV antibiotics until the call for new lungs, as a bridge to transplant my doctor said...who knows how much longer it will be...but I don't think too much longer, lets hope...

For now though, I am doing fine, just coasting along. I still have energy, am not bed ridden or anything. I am going to exercise 3 times a week at the transplant hospital physiotherapy room. I just keep in mind "you walk in to a lung transplant surgery, you walk out". The fashion show is going along famously, thank gosh for the amazing girls on the committee! The tickets were printed today! Amazing job NK! They are B_E_A_utiful.

tired of waiting on the side of the road, ready to start driving!

So...since last Tuesdays fiasco...what is with Tuesdays!? Seems to be the day, my body likes to wreak havoc!

I lost 5lbs in 4 hours of water retention weight from that lasix water medication they gave me. (peeing like crazy) I can see my ankle bones, and the cracks between my toes for the first time in a year! I had so much fluid retention from prednisone. My face swelling has gone down, my stomach, my boobs, my ankles, my legs, my toes! EVERYTHING. No wonder I was having a more difficult time breathing, there was probably water swelling in my lungs as well creating pressure, and I was carrying around an extra 5-6 lbs ALL the time.
I can barely carry a purse anymore (you know you need some new lungs, when you switch out your ever so cute, vintage long wallet, for a small change pouch, because the other wallet is just too heavy to carry anymore...that will be the day when I can wear whatever purse I want, and have whatever size of wallet I want carrying around) without getting out of breath, 5 extra pounds of water carrying around, bah...no thanks.

Anyways so I just have to spit everything out so I can look back at this blog come post tx.
I started my physio therapy/exercising on Wednesday. I think it was a bit too easy,(although I was taking it slow, since Tuesday was such a bad day) so I upped it today at exercising, pushed myself a little harder, which is good. They say there is no point coming, unless you are going to work it. They physiotherapists at TGH are all really nice. We 'work out' and build our muscles for an hour and a half. By the end of today I was pretty pooped.

This week I got my pager. I keep looking at it every three seconds, willing it to go off...which is probably going to get old REAL fast.
My pager also stopped working today...are you joking me? no wonder my blood pressure is through the roof...I'm petrified I will miss 'the call'! haha I called my pre tx coordinator, and so for now she has it down in the system to call my cell phone, and house number until I receive my new pager, for when I go home. Thank zeus I decided to check to make sure the pager was working today. It only worked once out of the three times I tested it. I had just GOTTEN all the features worked out on this pager, and even had a nice little tune that it played when it got paged haha.

This is such a roller coaster ride, this last stage of CF world and me. Last weekend sitting at my kitchen table, I told my parents about a girl who told me before her tx, one and a half years ago (she is now almost 1 year post tx, breathing dandy!!) "I can't even roll over on the couch or bed anymore without getting out of breath". I remember thinking at the time, 'oh gosh, I hope that never happens to me' (I couldn't even really picture being that winded, just rolling over would take your breath away...make you purse your lips and gulp in air...scary) Last weekend sitting at the table with my parents I said to them 'how can your body hate you so much, and turn on you so much, where I am now winded rolling over in bed'..and then I remember talking to the other girl a year and a half ago...and now it had now happened to me.

Thankfully this week that has cleared up, and I'm breathing easier, no longer needing oxygen all the time...Let's hope the good days start to out number the bad ones...

Okay what else, what else, what else, OH I am getting discharged this weekend! Home time. Hallelujah. I am feeling strong enough, where I think I will be able to manage my home IV's at home now, with the help of nurse mom and nurse dad. I hope this "stable" trend continues, until my new lungs come...no falling off a cliff health wise please.

I have been listed for 9 days....It is now June...come on June...I feel replacement body parts, or as a friend said "waiting for my spare tires." I'm just waiting on the side of the road for someone to come along and give me some spare tires...come on June baby, I'm tired of waiting on the side of the road, I want to start driving!

Roller coaster extraordinaire

This is how fast CF can turn on you and then stabilize on you again...
This morning I had to miss my first physio appointment at TGH, because I was feeling so sick. This is so unlike me, as I am totally up for the challenge for starting the new program...but I just was so lethargic and did not have any energy.

I have been coughing up blood since the weekend, and all this afternoon all I did was sleep and just had no energy whatsoever. My mom was down here for most of the day and after some 'words' with the doctor resident, she was soooo not impressed by this resident, who was going to make me go over to exercising, and really had no idea what she was talking about. I was just way to lethargic to voice my concerns over what has been happening to me the last few days, how I seem to be getting worse, so my mom stayed down all day to wait for the CF doctor. My blood pressure was through the roof, 160/100 last night, 154/93 this morning, anything under 120/80 is normal. My blood sugars have been spiking, I've been requiring more and more oxygen at rest and with walking around even my room. I've had headaches and my shortness of breath has increased. The CF doctors had clinic today so she could not see us until the end of the day.

Once we saw the doctor, she explained that my white blood cell count was still 11 which is good, under 10 is normal and I have been in the 20's for most of the last 4 months, and have not been 11 in like 8 months, so it would seem these drugs are holding steady...but all the other symptoms seem to say other wise. She said they can discuss changing the drugs, but really they do not have many more drugs to change me too...which is kind of scary in itself....because it seems I cannot come off of IV's or my body goes in to infection city mode again. So therefore we really want these drugs to keep working and keep chuggin' along until my new lungs come. She said though "this is definitely a change, and looks like I was listed at the right time" (this CF doctor is also one of the transplant doctors over at the other hospital. It's nice to have her on this week, since she will be one of the doctors that follows me post tx.

The CF doc came up with perhaps I am holding water retention from the steroid prednisone, and therefore putting pressure on my heart, causing my high blood pressure and high blood pressure causes you to be tired, headachy....my body saying..."hey quit it, don't do anything"
Tonight they put me on this water med, to release the water, basically I was peeing every 10 minutes or so for a few hours. This evening I started to feel a lot better, I was even able to come off the oxygen and sit on room air again! woo. The nurse took my blood pressure this evening and it was back down to 134/83....it has not been that low in a week and a half! Thank god. I was so nervous when the nurse was taking it, I bet it would have been better, had I not been nervous! haha

Today sucked...mainly because, it's scary what a roller coaster ride this is, how fast things can change...but good news is this evening I feel better, and hopefully tomorrow i will make it to my physio appointment at TGH.
Here's to peeing your problems away! Cheers haha