1 happy girl

2 new lungs
3 weeks in ICU
36 days in hospital
52 percent lung function
90 days after surgery
= 1 happy girl.


Three months yesterday!
52 percent lung function, 1.79 liters is what I blew at the pft lab. All in all it was a good appointment. My hemoglobin has finally stabilized at 81, still on the low side, but hopefully now that it is stable, it will begin to rejuvenate cells and climb higher. Kidney's need to fix themselves next, they're still running higher then they should be.
They think my foot drop could be from the 3 weeks I spent in ICU, and the nerve coiling or something like that, causing damage. It will just take time, and muscle rebuilding. sigh. It's frustrating only being able to walk for 5 minutes or so, and then stop so I don't crumble over while I clomp clomp along like a horse. I have these great new lungs now, and it's my body that's holding me back! Quite the opposite from 6 months ago!

foot drop

Yesterday I went to Wards Island. It was a beautiful day. Our adventures started out right away, since of course we got on the wrong ferry, (perhaps our excitement of me being able to breathe and do these things, left our brains a bit frazzled) as we stepped off the boat on to center island instead of wards, and did not realize it, until a South Korean family was telling the Canadians where they were haha. We eventually got it figured out, but not before we had lunch with the South Korean family. A couple and their son invited us to have lunch with them. The parents could not speak any english, but their son was over studying english from South Korea, and they were visiting him. Humour transcends language barriers most definitely, as this little Korean woman was sooo funny and loved to laugh.

On center island I sat on a swing for the first time in years...and I pumped my legs...and I breathed through my nose as I did it, back and forth, back and forth. Perhaps I need to go back and do all the child hood things that I could never do, or never appreciated 15 years ago when I was doing them....running on the beach, swinging on swings...next up....building sand castles? three legged races?
It sure felt wonderful as I pumped my legs back and forth, back and forth, and did it all without breaking out into a wind tunnel of gasping air through my mouth, or an oxygen deprived headache....no I just sat there pumping my legs, feeling the air whooshing past me for the first time in years...just like I did when I was younger before CF took my lungs on a permanent vacation. They always say children know a secret...that kindergarten children laugh the most times a day out of everyone....perhaps they know the secret...Perhaps it takes doing childlike things again to appreciate the gift I've been given.

This is a photo I took at Wards Island...which is a bit like stumbling upon a hidden munchkin other world/land with all the quaint cottages....It was so neat. This photo is looking back at the city...cool how it's in the clouds. I miss my cottage.

As for my health, the breathing is still going beautifully. I blew my highest lung function to date this morning on my home spirometer, 1.76 liters. I found out today at physio that I have something called 'foot drop' which is why I keep clomping my feet along....walking in general funny and using my hips instead of my feet to walk, which is also probably why my hips have been aching, since I'm compensating for the lack of feet walking. I'm not sure whether this foot drop is caused by medicine, since it seems to have developed in the last few weeks, or whether is is nerve damage from the surgery...I'm hoping it's medicine induced and can therefore be fixed quicker. The strengthening exercises the physio gave to me are killer...really, really hard to do as my foot feels disconnected from my legs...so to make them work is a huge effort....but whats one more little bump in the road, as long as these lungs keep being able to swing!

I leave you with a photo of me at Cherry beach, where they have the best chip truck in the world! (hamburgers are pretty good too!)

fashion show is up!

It's up, its up, it's up! You can now see the fashion show online at www.cfforcf.com. Ah what a beautiful night that was! The golf course looked like it had been transformed into a Paris runway! The show was amazing!

ashbridges bay beach

today I ran....well it was more then a walk, but perhaps less then a run? on the beach today. I hobbled my way in to a run, as my thighs and calves are still pretty weak, but I did it! and I did it without getting out of breath. hallelujah world. I have my life back.

Clinic went great today. I blew 48%, 1.64liters. The highest yet. I saw one of my surgeons who is the cutest little brazilian man ever. He was always there for me during the horrible weeks in ICU. Today I told my mom she did a good job convincing me that she didnt believe I was going to die, when I was so insistant that I was going to die...TWICE during the first two weeks after transplant. She said I know I should win a prize for that.
My other surgeon today said, look how well hattie is doing considering all the problems she had at the beginning...man transplant was not fun the first few weeks....shudder

Today I graduated to every 2 week clinic appointments and I have not even had my three month assessment yet! things are going pretty well, still a few kinks to work out with my blood and kidneys but all in all good...and lindsay tells me the hobble run is making a comeback haha

beginning to feel normal

I'm finally beginning to feel normal again. Before transplant my life was bombarded with hospital visits, oxygen tubes, coughing fits, and IV lines....I could not remember what life was like to go out with friends, life without having a curfew to get back for meds, what it was like to get in to a car without getting out of breath. I could not walk down the driveway without feeling as if I had run a marathon. I love to dance, and I had not been dancing in years...I cannot wait for the day that I can finally go out dancing again. Won't be long now. I get stronger every day.

Today climbing in to the car, no longer leaves me breathless. Today turning over, grabbing a pillow in bed, no longer leaves me gasping. Today I am living because of a selfless gift. Today I am living because someone decided to honour their loved ones wishes and donate their organs. Today I walk up the stairs (yes I can now walk up the stairs without holding on to the railing, still weak, but I'm doing it) and the only out of breath I get is from the effort it takes because my legs are weak, not from lack of oxygen or only having 12% lung function.
I now am able to make plans more then a day in advance, not having to worry, 'oh well I might be sick then. I can't make that, can't commit to that' CF changes to fast, I could never make plans a month in advance. Now I am able to make plans far in advance...It's a very weird feeling. Its weird and hard for me to think and make future plans, as I have not been able to do that for YEARS now.

Today I walk into my apartment and no longer hearing the humming of the massive oxygen machine, the dripping of the IV medicine, or the annoying fridge hum (yes we finally got it fixed! haha) all I hear is the outside leaves rustling in the wind, and then of course coming up behind me a little meow as my cat comes to see what I am doing. I cannot wait for the day that I can pick her up (she weighs more then 10 pounds and therefore I can not pick her up until after three months). I remember I used to judge on how sick I was getting on a scale of breathlessness when picking up Beau...I was 22 years old and did not even want to bend down to fill my cats water bowl with water because it left me breathless. I'll be 23 in a couple months. 23 on the 23rd of December. My champagne birthday. What a year this has been for me. It still boggles my mind that I got a lung transplant at the age of 22. It still boggles my mind that they can do lung transplants. I'm so grateful I did not have to die from this debilitating disease. I'm just so sorry that someone else had to die so that I could live. But living I am doing. I went out with my girlfriends last night....and to begin to feel normal is so wonderful. It won't be long now. I just need to build up my leg muscles still. My kidneys are still functioning high and they are sending me to a hematologist as they cannot seem to figure out what is going on with my blood....as I cannot keep getting blood transfusions week after week. My headaches have subsided. For awhile there it felt as if someone had thrown a tomahawk into the top of my skull. They also told me why I have been so cold after transplant, (on the 30+ days out I would still wrap myself in a wool blanket) they said it was because I was not used to having oxygen coursing through my whole body. I make oxygen on my own....no longer is my outfit defined by my nasal prongs....

I blew a 1.61 liters on my home spirometer this morning. I blew at clinic 1.52 liters on monday, 44%....slow and steady wins the race. I'm sure it will improve more once my leg muscles build up and I can work my lungs harder. For now I am just enjoying getting back into being normal, and making plans far in advance because I can....sigh...thank you thank you thank you!

A Summer For Hattie

Incase you have not seen the fundraising all summer long that the 'Lady Team' did. They raised in total with the night of the fashion show over 30,000 dollars to help make CF stand for cure found!
I know everyone is super eager towatch the fashion show itself, and it should be up soon, we promise! (I saw it already, and it's even better the second time round if that's possible! haha)

taking up knitting

I've decided to take up knitting. Its kind of boring all this waiting...and TV is getting a little tiresome, and reading is still a bit difficult as my brain is still sometimes fuzzy.....so knitting seemed like a good idea. My moms friend is a really good knitter and has knit all these awesome sweaters. My goal is to make this jumper or a jumper this one is pretty complex haha but hey you gotta dream big. My fingers are already sore and I'm just practicing. My loops are too big, tension is not the same....but at least it will give me something to do as I recover in the city.

Its weird thinking about making warm sweaters, I saw an add for a Christmas CD on TV yesterday and I thought why the heck are they showing Christmas stuff already...oh because its September, Christmas is coming....yet my brain is still stuck back in April when I first got hospitalized for five weeks and my slippery slope of sickness began...therefore I still keep waiting for summer to come. Its a very weird feeling to experience 'missing' a whole season and to have your brain and thought process stuck six months back.

I'm now experiencing splitting headaches, as if someone has taken a tomahawk and thrown it into the top of my head. They are quite bad in the evenings, but at least the nausea has disappeared. I got a blood transfusion on Friday and have felt way more energy since! They still do not know why my hemoglobin keeps dropping uncontrollably....hopefully at Wednesday's clinic they will have figured it out! Being poked and pricked all the time is really starting to wear thin. Not fun. My veins are starting to notice and disappear I think ahah the one nurse asked me "are you a good poke" to which I retorted.."no...are you a good poke" lol...sigh if anyone has any tricks on how to grow one's veins I'm all ears.

It still blows my mind that I am breathing. Walking up the stairs is getting way easier as is walking around the house. I now almost look normal walking, no more crippled for the most part. Running is up next! Man that still freaks me out!

1.57 liters! I keep climbing!

Thanks to my dear friend Kim, and to the CCFF peel volunteers who were able to get me a spirometer. A state of the art spirometer. Its a breathing machine at home that measures my lung capacity. I have heard that the ones the other transplant folks use are not very accurate or good, but mine seems to be dead on the money. I compared it to the big machine at TGH and it shows the same liters. I think the other non accurate spirometers are technology from when they first started doing transplants 20 years ago, so technology has greatly improved. This little one that the company gave me is so cute and tiny. Today I blew my highest lung function to date, 1.57 liters! I started off at 1.22 liters, four weeks ago, and am trying by the end of it all to reach 3.5 liters, for someone my size and weight that is where I should be. Hopefully these lungs have it in them.
Right now my mom is sick so shes staying away from me while she fights this little head cold. Thanks to M and N who have been coming in and staying with me while mom is sick and dad is working.
I did blood work early this morning because my hemoglobin has kept dropping. Last clinic appt. it was at 74, I was blood transfused in the hospital at 65, and 85, i think normal is around 120. My body seems to not be producing blood cells very well. Today it was low again, so I have to go in tomorrow for a blood transfusion....wump wump. but at least it will give me some energy, having low blood cells is making me tired.
Physio is going well. My sprained ankle is almost all better, so i was able to go on the treadmill yesterday and i can get up out of the seat without using my arms. woo. I am also up to 5 pound weights lifting with arms. I started off at 2 pounders. Im getting there!
Theres another great article in the newspaper about the fashion show!
you can also view a summer for hattie video on the website at www.cfforcf.com and you should be able to view the fashion show fully on friday!
p.s. happy birthday emma! Sweet 16!!!

Rockin’ the runway for Hattie
Thursday September 2 2010 By Matthew Strader, Enterprise Staff

Couture fashion captured the eyes (including jewelry by ‘You’ve Got Hattitude,’ seen above), but lending help to Cystic Fibrosis sufferers dominated the evening at the Couture Fashion for a Cure Found fundraiser at the Glen?Eagle Golf Club on August 26. Matthew Strader photo

Lay down, stop breathing, take out two major organs, have them replaced, recover, exercise, breathe, vomit, learn to walk again, see through the fog of medication, exercise, breathe, vomit, strain to make your muscles work, breathe, exercise, vomit, stand up, breathe….

Okay?

Now found a fashion show fundraiser for 350 people.

Hattie Dunstan did. And with the help of her friends and family, the Canadian Cystic Fibrosis (CF) Foundation is $30,412.69 richer.

“This evening was started by allowing ourselves to dream,” Kim Alderdice, friend to Dunstan and director of the fashion show told the crowd of onlookers at the Couture Fashion For a Cure Found (CFforCF) show on August 26 at Glen Eagle Golf Club. “The creation of this event was built on Hattie imagining she could do something to help Cystic Fibrosis research in Canada, knowing her friends would be willing to help and support her, and like any fashionista, she wanted to produce her very own fashion show.” Dunstan said the idea for the fashion show began, like many other ideas, through a little copying.

“I participated in another fashion show fundraiser in March,” she said. “What a great opportunity to raise funds and awareness about CF and also do something I love… fashion.”

She said she had no idea what was about to happen. That she wasn’t aware the friends and family she inspired would be so dedicated to building success through their generosity and commitment. The first paragraph of this story is not simply for artistic effect. In essence, it’s a day in the life of a 22-year-old Caledon girl who had to endure a double lung transplant in order to survive CF. She did.

The operation was a success, Dunstan was given the gift of life on July 5, and now fashions the hope that her inspiration and her friends and families efforts will tackle the problems another CF sufferer might face before they have to suffer them.

“Here’s to new lungs, to fashion, to donors, to designers, to the community and beyond, to doctors, to science, to new styles and clothing trends, to the selfless people who made this all happen,” Dunstan wrote in her founders note.

This summer has seen her foundation, dubbed “Hattie’s Crew” by The Enterprise, put on a fundraising raffle, market booths, flower sales, bottle drives and the culmination, the CFforCF show, raising the aforementioned $30,000 and increasing awareness about organ donation and CF through smiles, information packages, and genuine care.

They involved an entire community in their cause.

And the community responded in spades.

All they say now is thank you.

Thank you to their premier, and executive sponsors. The businesses that lent support that without they would not have been able to complete their goals. The Kinsmen for volunteer efforts. The eight local fashion houses that donated clothing for the runway. And, to Scotia Bank volunteers who helped with their silent auction and raffle, and will donate their own cheque of $5,000 to the cause after a promise to match figures raised up to $5,000.

But most of all, they need to mention and thank the entire crew.

Hattie Dunstan (founder and inspiration), Kim Alderdice (director and co-ordinator), Rachael Grice (events co-ordinator), Lindsay Bishop (media/program design), Nikki Bettinelli (graphic designer), KC Heenan (MC and store liaison), Brittany Bolton (backstage manager), Kyla Zanardi (local media liaison), Steph Bertolin (sponsor liaison), Nicole Mcginn (stylist), Lauren Wak (decorator), Katherine McCool, Tasha Potter, Carly Gordon, Natasha Sicondolfo and Danielle Venditello.

For now, Dunstan will keep exercising, keep working her body to get used to her new lungs, and keep designing.

She’s also still dreaming.

“It’s just an idea,” she said. “But we thought because it’s so expensive after transplant, and a lot of people come from out of province and they need a place to stay that we need an apartment building downtown for transplant patients.

Equipped with subsidized apartments, information and resources, the dream for the building is a place for those who don’t need to occupy the time they need to spend healing doing research just to have a place to stay.

“We just want to help those families out. We found (during her own ordeal) there wasn’t a resource person, luckily my mom doesn’t work so she could do it all herself. But we want something in place to help those families.”

You can view the “Summer for Hattie” video on the website www.cfforcf.com and the video of the fashion show will be posted in early September.

And if your eye is drawn by continued stories of courage, humour and inspiration, follow Dunstan’s own blog at: icecreammaplesyrup.blogspot.com.