Check this out!
here is a little inspiration for us all.
http://events.onlinebroadcasting.com/ccff/043009/frameset_popup.php
this is a conference filmed in may 2009 and on it there is four women post transplant talking about their experiences.
it is amazing to see how well they are doing.
you can click on the link and then sign in. scroll through the video till almost the end. it is the last thing of the conference.
go modern medicine! it boggles my mind!
Friday, July 31, 2009
Thursday, July 30, 2009
Last day, and the sun is shining! Good Karma
Today was the last day of the assessment. Hallellujah. Phew it's been a whirlwind week.
Yesterday was the hardest, even though today was suppose to be tough too with meeting with the transplant nurse coordinator, but she was lovely and told us pretty much everything we already had researched and knew, so there were no curve balls thrown at us today.
the five of us went to the meeting today. My boyfriend, dad, mom and older brother. We all watched last night before today's assessment on the Canadian Cystic Fibrosis Foundation web casting of three women who are like 10 years post transplant. They're doing amazing and it was so inspirational.
So in three weeks, all the doctors will meet and the nurses, and nutritionists, anesthesiologist, and social worker on one day, and they will discuss all the tests that I've been doing all week. Then we'll know where to go from there!
I wish my little brother could have come to the meeting today, but he's up north for the summer working. It was so great to have all 4 of us at the meeting. It was really great to have my support team there today.
The weather is suppose to be lovely this weekend. I have a new one piece bathing suit that I will be sporting on the dock, on the island this weekend.
I'm tired and ready to have my margarita now! I'm going to sit out on the screened in porch, eat some chippies, and soak up this beautiful weather, finally!
Yesterday was the hardest, even though today was suppose to be tough too with meeting with the transplant nurse coordinator, but she was lovely and told us pretty much everything we already had researched and knew, so there were no curve balls thrown at us today.
the five of us went to the meeting today. My boyfriend, dad, mom and older brother. We all watched last night before today's assessment on the Canadian Cystic Fibrosis Foundation web casting of three women who are like 10 years post transplant. They're doing amazing and it was so inspirational.
So in three weeks, all the doctors will meet and the nurses, and nutritionists, anesthesiologist, and social worker on one day, and they will discuss all the tests that I've been doing all week. Then we'll know where to go from there!
I wish my little brother could have come to the meeting today, but he's up north for the summer working. It was so great to have all 4 of us at the meeting. It was really great to have my support team there today.
The weather is suppose to be lovely this weekend. I have a new one piece bathing suit that I will be sporting on the dock, on the island this weekend.
I'm tired and ready to have my margarita now! I'm going to sit out on the screened in porch, eat some chippies, and soak up this beautiful weather, finally!
Wednesday, July 29, 2009
pop goes the weasle
well...today has been the hardest day ever i think of the lung transplant assessment week.
I think I've been living in a bubble...a clear bubble of love, hope, warmth, disbelief, and maybe non reality...i've been sweeping up everyone around me into the bubble as I go along to protect them as well... none of us realized just how huge this. I've been sugar coating this whole process for myself. I guess it's my brains way of coping.
today...the bubble burst.
everything hit.
i'm no longer in that nice little bubble. today was a really hard day at the assessment, meeting the with the social worker, getting the nitty gritty of things...tough questions, tough looking at my life.
hard to have that bubble burst...i want back in it.
it's really scary out here in reality....
I think I've been living in a bubble...a clear bubble of love, hope, warmth, disbelief, and maybe non reality...i've been sweeping up everyone around me into the bubble as I go along to protect them as well... none of us realized just how huge this. I've been sugar coating this whole process for myself. I guess it's my brains way of coping.
today...the bubble burst.
everything hit.
i'm no longer in that nice little bubble. today was a really hard day at the assessment, meeting the with the social worker, getting the nitty gritty of things...tough questions, tough looking at my life.
hard to have that bubble burst...i want back in it.
it's really scary out here in reality....
Tuesday, July 28, 2009
Day 2...boy am i makin' a lot of wildjumble berry juice!
okay so today was day two of the assessment week...i'm tired already kids! but today as a treat me and my mom went to the mall afterwards and i bought two full piece bathers (they are super chic, and they'll also cover up my insulin bruises on my stomach!) haha
I cannot wait for this week to be over, to do the farmers market on Friday with my jewels, and then have a margarita on my boyfriends dock at the island...sigh. only three more days to get through.
so far the tests have not been too intrusive...just a lot of them.
I did my six minute walk today. It's where you walk as fast as you can for six minutes and see how many metres you get. I haven't done a six minute walk in five years when i first transferred over to the adult CF clinic. I have dropped a lot of metres since 5 years ago... but I guess thats expeceted since I've also lost half my lung function since then.
I wore my oxygen while I did the walk, which was like having a 10 pound baby on your back for all of six minutes walking gang buster speed. It was like I was carrying beau beau walking my hardest! and my cat is not a light weight...I've had her on a diet for....maybe.... oh my gosh I think it's almost a year now, she's lost a little bit of weight, but we still have a lot of work to do! haha
When my baby cousin Ethen was over, my cousin Julie said (her son is Ethen) look Ethen, look at the fat pretty kitty...Beau sulked for the rest of the evening haha
Tomorrow we wake up at 5 am to get down to my echo, where they hold a wand over your chest and bounce sound waves at your heart to make sure she's all good. If your five minutes late they take another patient and we lose the spot...if you know me and my family at all...we are ALWAYS on time...i'm kidding... we suck at being on time. we lost that gene some how. so we are leaving super early in the morning so we make it. send out positive thoughts that there is no traffic or accidents to hold us up on the hwy!
A friend of mine is going to Australia tomorrow. I am so jealous. I cannot wait to start travelling in the future, which is what a lung transplant would allow me to do. That is something I look forward to in this whole process, the chance to one day carry my own bags down the terminals while RUNNING! haha
I think I shall plan a trip to washington this summer. My cousin lives in the states, so it would be great to go there. I'm 21, legal down there, and I can finally drink after 5 months of not being allowed to due to medicine! My favourite summer time drink is margaritas so it will be delicious to drink them ALLLLL weekend long!
Thats all for now. Day Three starts early tomorrow. I'd better get to bed!
I cannot wait for this week to be over, to do the farmers market on Friday with my jewels, and then have a margarita on my boyfriends dock at the island...sigh. only three more days to get through.
so far the tests have not been too intrusive...just a lot of them.
I did my six minute walk today. It's where you walk as fast as you can for six minutes and see how many metres you get. I haven't done a six minute walk in five years when i first transferred over to the adult CF clinic. I have dropped a lot of metres since 5 years ago... but I guess thats expeceted since I've also lost half my lung function since then.
I wore my oxygen while I did the walk, which was like having a 10 pound baby on your back for all of six minutes walking gang buster speed. It was like I was carrying beau beau walking my hardest! and my cat is not a light weight...I've had her on a diet for....maybe.... oh my gosh I think it's almost a year now, she's lost a little bit of weight, but we still have a lot of work to do! haha
When my baby cousin Ethen was over, my cousin Julie said (her son is Ethen) look Ethen, look at the fat pretty kitty...Beau sulked for the rest of the evening haha
Tomorrow we wake up at 5 am to get down to my echo, where they hold a wand over your chest and bounce sound waves at your heart to make sure she's all good. If your five minutes late they take another patient and we lose the spot...if you know me and my family at all...we are ALWAYS on time...i'm kidding... we suck at being on time. we lost that gene some how. so we are leaving super early in the morning so we make it. send out positive thoughts that there is no traffic or accidents to hold us up on the hwy!
A friend of mine is going to Australia tomorrow. I am so jealous. I cannot wait to start travelling in the future, which is what a lung transplant would allow me to do. That is something I look forward to in this whole process, the chance to one day carry my own bags down the terminals while RUNNING! haha
I think I shall plan a trip to washington this summer. My cousin lives in the states, so it would be great to go there. I'm 21, legal down there, and I can finally drink after 5 months of not being allowed to due to medicine! My favourite summer time drink is margaritas so it will be delicious to drink them ALLLLL weekend long!
Thats all for now. Day Three starts early tomorrow. I'd better get to bed!
Monday, July 27, 2009
First timer here...
Well...after some convincing from my friend Bree...here is my first blog. She is also going for a double lung transplant, we met through the internet, but funnily enough we go to the same university.
I don't know how often I'll use this blog, but I'm starting a double lung transplant assessment and i guess it's good emotionally to start blogging, but also for others to read about what i'm going through, because some people maybe be like "WHAT" and have no idea that i've taken this next step, since my lung function just is being so stubborn and refuses to increase...soo today I went to Hospital for the first day of the assessment.
This is not to be confused with being listed for a lung transplant...I'm not being listed...just going for testing to see what the whole deal is...we'll know more in a month after all the testing is done (it's a week long deal down at the hospital) and then all the doctors get together, read the tests, and decide whether or not to put you on the list...
Maybe I should start from the beginning...I have cystic fibrosis, a genetic disease that more or less causes your lungs to fail. they begin to fill up with sticky mucus which cause bacteria to get stuck and able to grow, which causes infections. in case you were wondering why i always spit up mucus or cough...there's your answer, i'm trying to get it all out of my lungs, so it doens't fester in there and cause infections.
I go on IV antibiotics about twice a year for 8 weeks at a time, to help with these infections. I am constantly down at the hospital for check ups, and to know how my lung function is doing.
Over the past year, my lung function has decreased, despite aggressive treatments...it's been quite frustrating, because all my life i was so active, and in the past three years, my lung function has deteriorated greatly. It's sometimes hard for me to do the little things, like climb a flight of stairs to my bedroom on my bad days.
So in february my CF doctors thought it would be a good idea to start the lung transplant assessment process, because they don't want me to miss the boat. I can't be too healthy where my quality of life is good enough that the risk of lung transplant isn't worth it yet, but i can't be too sick where i wont' survive the surgery and be able to get well after. Sooooo it's a toss up...it's hard to know when to get it.
after this week of testing we'll know where i stand...today i met with a nurtitionist with the transplant team who said i was the perfect weight (i've gained 13 pounds in 5 months) for tranplant. You can't be a total fattie, and you can't be a skinny minnie, and i'm just perfect for it.
I also have a really good support system. I have an amazing mom who comes with me to every appointment, she missed one this year for the first time in like ever, and my dearest boyfriend took me for the first time to clinic. it was nice for him to finally meet everyone as he's heard abotu the CF team for years! they also really liked meeting him too, as they've heard so much about him over the years! haha
My brothers and dad came with me to the intial consult in June for the lung assessment. So the doctors say i'm in the perfect position because some people get turned away from having a transplant becuase they don't have a support system.
I have two great brothers, an amazing dad and mom, and a great boyfriend who have all been involved in this process. so win win. i'm very lucky. not to mention i have great friends, who i'm sure if i told them more about it...(again it's all kind of new to me, i don't knwo how much to share with people...but then i think maybe i shouldn't sugar coat it for people, ebcause after all i'm the one whos going through it) for the friends i have told about, they have been very supporative too.
hmm okay well i guess thats it for now? shall i continue to blog? perhaps, it's nice to vent to a computer screen and wonder who will be reading this...thanks bree for getting me started! haha
I don't know how often I'll use this blog, but I'm starting a double lung transplant assessment and i guess it's good emotionally to start blogging, but also for others to read about what i'm going through, because some people maybe be like "WHAT" and have no idea that i've taken this next step, since my lung function just is being so stubborn and refuses to increase...soo today I went to Hospital for the first day of the assessment.
This is not to be confused with being listed for a lung transplant...I'm not being listed...just going for testing to see what the whole deal is...we'll know more in a month after all the testing is done (it's a week long deal down at the hospital) and then all the doctors get together, read the tests, and decide whether or not to put you on the list...
Maybe I should start from the beginning...I have cystic fibrosis, a genetic disease that more or less causes your lungs to fail. they begin to fill up with sticky mucus which cause bacteria to get stuck and able to grow, which causes infections. in case you were wondering why i always spit up mucus or cough...there's your answer, i'm trying to get it all out of my lungs, so it doens't fester in there and cause infections.
I go on IV antibiotics about twice a year for 8 weeks at a time, to help with these infections. I am constantly down at the hospital for check ups, and to know how my lung function is doing.
Over the past year, my lung function has decreased, despite aggressive treatments...it's been quite frustrating, because all my life i was so active, and in the past three years, my lung function has deteriorated greatly. It's sometimes hard for me to do the little things, like climb a flight of stairs to my bedroom on my bad days.
So in february my CF doctors thought it would be a good idea to start the lung transplant assessment process, because they don't want me to miss the boat. I can't be too healthy where my quality of life is good enough that the risk of lung transplant isn't worth it yet, but i can't be too sick where i wont' survive the surgery and be able to get well after. Sooooo it's a toss up...it's hard to know when to get it.
after this week of testing we'll know where i stand...today i met with a nurtitionist with the transplant team who said i was the perfect weight (i've gained 13 pounds in 5 months) for tranplant. You can't be a total fattie, and you can't be a skinny minnie, and i'm just perfect for it.
I also have a really good support system. I have an amazing mom who comes with me to every appointment, she missed one this year for the first time in like ever, and my dearest boyfriend took me for the first time to clinic. it was nice for him to finally meet everyone as he's heard abotu the CF team for years! they also really liked meeting him too, as they've heard so much about him over the years! haha
My brothers and dad came with me to the intial consult in June for the lung assessment. So the doctors say i'm in the perfect position because some people get turned away from having a transplant becuase they don't have a support system.
I have two great brothers, an amazing dad and mom, and a great boyfriend who have all been involved in this process. so win win. i'm very lucky. not to mention i have great friends, who i'm sure if i told them more about it...(again it's all kind of new to me, i don't knwo how much to share with people...but then i think maybe i shouldn't sugar coat it for people, ebcause after all i'm the one whos going through it) for the friends i have told about, they have been very supporative too.
hmm okay well i guess thats it for now? shall i continue to blog? perhaps, it's nice to vent to a computer screen and wonder who will be reading this...thanks bree for getting me started! haha
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