TOday is one of the best days ever.
I am leaving for BC in an hour for three months.
See ya in awhile Ontario.
Thank you donor for making this possible.
Thank you family for supporting me through everything.
This is my first adventure...I've NEVER been away from home or my family for longer then two weeks.
It's quite a feeling to be healthy enough, strong enough to flee from your home province for three months.
I'll probably be updating my hattitude blog, which you can check out here www.hattitude-hattitude.blogspot.com for photos of our adventures etc.
eeeeek! one hour. wahooo
Saturday, January 28, 2012
Monday, January 16, 2012
C.F. is what happens when your busy making other plans...
currently listening to Lana del rey
you know the ol' saying "life is what happens when your busy making other plans"....well I am home now from clinic with a saline lock peripheral IV....10 days of IVantibiotics. Ceftazadine....so flight delayed hopefully only 2 weeks. It's better to find everything out now and get it all sorted out before I get there and have to be pryed back here. I probably would not be a happy camper.
My creatine was down to 95. Normal. It is never usually below 100 which is normal.
My wbc was down to 10 from 12.7 (indicating less infection)
My haemoglobin was 121, a normal non lung double transplant woman usually sits at 120. Normal.
I know...right?...seems like they got my blood work mixed up with someone elses...but i swear i double checked!
The good thing is, breathing still a-okay, everything is dandy, minus the tight chest which they said was probably due to the pseudomonas. So these drugs will nip her in the bud.
They also found something like asperitus (sp?) pneumonia...meaning I may not be swallowing my food properly and going in to my lungs causing the rejection and other not so nice things to have...so I start a stomach emptying pill as well today.
The funny thing about being a doctor is you never really truly know whats wrong with someone...it's science but also it's a lot of art...an educated guessing game on what to add, what it could be, what should be done...no one knows why you get cancer, why you got that mark on your back, why your back is sore, or why exactly you have heart burn....it's all an educated guessing game...a very skilled art form with a minor in science. At least that seems to be in the case in transplants.
Dear universe,
thanks for making this glitch seem not so big in the grand scheme of things. Thanks for making this glitch treatable. thanks for making the doctors able to have theories and hypothesis'.
Eternally grateful to still be here breathing, planning, dreaming
Sincerely,
the girl with curls
Dear vancouver,
I'm coming, I'm coming. Save me a seat.
Sincerely,
the girl with the orange 1920's umbrella
you know the ol' saying "life is what happens when your busy making other plans"....well I am home now from clinic with a saline lock peripheral IV....10 days of IVantibiotics. Ceftazadine....so flight delayed hopefully only 2 weeks. It's better to find everything out now and get it all sorted out before I get there and have to be pryed back here. I probably would not be a happy camper.
My creatine was down to 95. Normal. It is never usually below 100 which is normal.
My wbc was down to 10 from 12.7 (indicating less infection)
My haemoglobin was 121, a normal non lung double transplant woman usually sits at 120. Normal.
I know...right?...seems like they got my blood work mixed up with someone elses...but i swear i double checked!
The good thing is, breathing still a-okay, everything is dandy, minus the tight chest which they said was probably due to the pseudomonas. So these drugs will nip her in the bud.
They also found something like asperitus (sp?) pneumonia...meaning I may not be swallowing my food properly and going in to my lungs causing the rejection and other not so nice things to have...so I start a stomach emptying pill as well today.
The funny thing about being a doctor is you never really truly know whats wrong with someone...it's science but also it's a lot of art...an educated guessing game on what to add, what it could be, what should be done...no one knows why you get cancer, why you got that mark on your back, why your back is sore, or why exactly you have heart burn....it's all an educated guessing game...a very skilled art form with a minor in science. At least that seems to be in the case in transplants.
Dear universe,
thanks for making this glitch seem not so big in the grand scheme of things. Thanks for making this glitch treatable. thanks for making the doctors able to have theories and hypothesis'.
Eternally grateful to still be here breathing, planning, dreaming
Sincerely,
the girl with curls
Dear vancouver,
I'm coming, I'm coming. Save me a seat.
Sincerely,
the girl with the orange 1920's umbrella
Sunday, January 15, 2012
sometimes it's just the universe's way of reminding you...
Last week was my 18 month assessment. I have been living and breathing and fighting with these new pink, disease free, lungs for a year and a half now.
The week started off well.
My pft's were stable at 62%.
My six minute walk was stable at 615 meters.
My CT scan showed no changes.
My blood work came back very good.
My kidneys are working well.
Liver is in check.
My tac level (my anti rejection drugs) was a little low. It has been in the past. It sometimes bounces around the place the level. All in all everything checked out. I had even gained a little weight (love weight, or winter weight? Still debating...jury's out on that one)
I did my bronchoscopy Tuesday morning at 8am.
Thursday evening I had a jewellery show.
Thursday night, I got a phone call from my coordinator. My bronchoscopy results were in. I have acute rejection. (enter scary duh duh duh music...at least that's what happened in my head when I heard those words)
My new pretty little lungs were not happy with something I was doing...so they decided to start to reject a little. Just when I thought we were getting along so well.
It was not the nicest news to receive, the night of a jewellery show, 5 days before I leave for Vancouver for 4 months, and on a rainy awful night, when I stepped outside, missed the step, and went down in to the gravel in the mud, rain and cold...mustard sweatre and grey dress pants a mess: check.
Picture a very distraught girl.
What does this all mean?
Well I guess they do not treat grade 1 rejection. There are four levels. I have level one.
They upped my tac mg (anti rejection drug) so that the blood work will become in the normal level.
They are thinking and hoping this will eradicate the rejection. Please pray and hope that it does.
It is probably one of the scariest things in the world to hear your lungs are rejecting...no matter what level it is.
These awesome new little lungs that I worked SO hard to get, and SO hard to be where I am now are rejecting... sigh...a little discouraging. New Lungs don't you know, you and me are in this for life? You are suppose to cooperate from here on out! Please and thank you.
The good news is, I do not have a fever, my home spirometer has not changed, and my exercise tolerance is still a ++.
I have developed a tightness in my chest and a heavyness, almost like inflammation...maybe it's all in my head though? I can't decide, since on friday I received another voice mail, announcing that I had pseudomonas in my lungs (an icky bacteria...nobody really wants lurking around), another bronchoscopy result was in. Oh lovely, cause that's EXACTLY what I wanted to hear.
Perhaps my little mind is working over time, thinking how the heck am I still going to get to Vancouver, live a 'normal life' and deal with these two things thrown at me?
The brain is a POWERFUL tool. I think it's tricking me in to thinking something is wrong with my chest, because EVERYTHING ELSE is absolutely normal. Worry wart over here.
Tomorrow I go in for blood, and to see the doctor.
I am planning on keeping an eye on everything when I am in Vancouver with the lung team out there in Van city, since with grade 1 it seems you don't really do anything, just monitor. I will get another bronchoscopy done in May when I am home.
As my friend Lindsay said when I exclaimed "but is this normal to get rejection this far out!!! (panic filled voice)"
"Yes hattie, that's why they do bronchoscopes for the first two years, because rejection is common in the first couple years, hence why they keep up with the bronchs"
Thanks Lindsay for being the calming soothing voice of wisdom.
OF course I txted all my other TX post and pre friends to make sure I was going to be okay. You know who you are. Thanks for listening patiently and guiding me with encouraging words. Sometimes a cystic has to freak out every once in awhile.
Anyways I'll let you know how tomorrow goes...If all goes well. I'll be writing to you from my new home in Vancouver!
Goodnight sweet sweet blogosphere. Thanks for listening.
The week started off well.
My pft's were stable at 62%.
My six minute walk was stable at 615 meters.
My CT scan showed no changes.
My blood work came back very good.
My kidneys are working well.
Liver is in check.
My tac level (my anti rejection drugs) was a little low. It has been in the past. It sometimes bounces around the place the level. All in all everything checked out. I had even gained a little weight (love weight, or winter weight? Still debating...jury's out on that one)
I did my bronchoscopy Tuesday morning at 8am.
Thursday evening I had a jewellery show.
Thursday night, I got a phone call from my coordinator. My bronchoscopy results were in. I have acute rejection. (enter scary duh duh duh music...at least that's what happened in my head when I heard those words)
My new pretty little lungs were not happy with something I was doing...so they decided to start to reject a little. Just when I thought we were getting along so well.
It was not the nicest news to receive, the night of a jewellery show, 5 days before I leave for Vancouver for 4 months, and on a rainy awful night, when I stepped outside, missed the step, and went down in to the gravel in the mud, rain and cold...mustard sweatre and grey dress pants a mess: check.
Picture a very distraught girl.
What does this all mean?
Well I guess they do not treat grade 1 rejection. There are four levels. I have level one.
They upped my tac mg (anti rejection drug) so that the blood work will become in the normal level.
They are thinking and hoping this will eradicate the rejection. Please pray and hope that it does.
It is probably one of the scariest things in the world to hear your lungs are rejecting...no matter what level it is.
These awesome new little lungs that I worked SO hard to get, and SO hard to be where I am now are rejecting... sigh...a little discouraging. New Lungs don't you know, you and me are in this for life? You are suppose to cooperate from here on out! Please and thank you.
The good news is, I do not have a fever, my home spirometer has not changed, and my exercise tolerance is still a ++.
I have developed a tightness in my chest and a heavyness, almost like inflammation...maybe it's all in my head though? I can't decide, since on friday I received another voice mail, announcing that I had pseudomonas in my lungs (an icky bacteria...nobody really wants lurking around), another bronchoscopy result was in. Oh lovely, cause that's EXACTLY what I wanted to hear.
Perhaps my little mind is working over time, thinking how the heck am I still going to get to Vancouver, live a 'normal life' and deal with these two things thrown at me?
The brain is a POWERFUL tool. I think it's tricking me in to thinking something is wrong with my chest, because EVERYTHING ELSE is absolutely normal. Worry wart over here.
Tomorrow I go in for blood, and to see the doctor.
I am planning on keeping an eye on everything when I am in Vancouver with the lung team out there in Van city, since with grade 1 it seems you don't really do anything, just monitor. I will get another bronchoscopy done in May when I am home.
As my friend Lindsay said when I exclaimed "but is this normal to get rejection this far out!!! (panic filled voice)"
"Yes hattie, that's why they do bronchoscopes for the first two years, because rejection is common in the first couple years, hence why they keep up with the bronchs"
Thanks Lindsay for being the calming soothing voice of wisdom.
OF course I txted all my other TX post and pre friends to make sure I was going to be okay. You know who you are. Thanks for listening patiently and guiding me with encouraging words. Sometimes a cystic has to freak out every once in awhile.
Anyways I'll let you know how tomorrow goes...If all goes well. I'll be writing to you from my new home in Vancouver!
Goodnight sweet sweet blogosphere. Thanks for listening.
Monday, January 2, 2012
looking back over a year
2012 I am in to my second year with new lungs. If I thought 2011 was going to be a good year, baby 2012 is going to be the best yet.
I started a couple years ago a tradition of looking back on my year month by month. You can view 2009 here and 2010 here.
Here is my synopsis of 2011.
January brought me my six month lungiversary and my first run down a city block. My first run up city steps. January made me fall in love with being able to jog.
February brought ear infections, headaches, fevers, and other infections. February brought me to a haemotlogist for low blood counts. February I experienced a bone marrow biopsy. Something I don't reccomend. It is MOST uncomfortable and sends my body into spasm shakes. February my results came back saying I had a healthy bone marrow and that I did not have Lymphoma. Later in the year, I would learn I did have lymphoma, it was just lurking somewhere else ready to attack.
March brought my first hospitalization. I had developed CMV virus and a psedumonus infection. March also brought with it the gift of being able to say "yes everything was worth it. Life is worth it now"
April brought my first adventure with my new lungs. I took my lungs to washington DC to visit my cousin. It was the best trip ever. It felt like I should have been in a movie, skipping and 'tra la la laing' the whole time. April brought the first time I blew up balloons post transplant. What a wonderful feeling to blow up balloons for a birthday celebration and not get winded.
May I played my first baseball game in years. I aced it.
May also brought my first tx tragedy. My friend Bree died. She was my age, my mentor, a fellow double lung transplant recipient, a guelph university alumni. She was my friend and I am so so so sad she had to leave this world only a year and 9 months after her life saving surgery. What a courageous and amazing spirit she was.
June brought summer and me having to fight another battle. A battle I never thought I'd have to go through, especially not so soon after transplant. June brought a false negative test to having lymphoma. A biopsy on the back of my nose. More hospitalizations. A cancelled jewellery show. A weakened girl. More CT scans. An MRI and finally a diagnosis of Lymphoma cancer.
July brought trips to the cottage. My first anniversary with new lungs. Planning of the 2nd annual CF for CF fashion show. July brought weekly visits to Princess Margaret hospital for doses of chemotherapy.
August brought me Tristan.
August brought the most successful to date CF for CF fashion show, raising over $30,000 and helping sponsor a family through transplant.
September brought me laughs and happiness with someone who I never thought would. September found us in a baseball tournament for Heather, a strong lady fighting sarcoma cancer.
October found me in Calgary visiting my friend. Another adventure. My first time seeing the rockies. October spawned an idea in my head...a move to vancouver? October was my first time going to a Leafs game.
November was a month of hope and renewel. My cystic sister got her call for new lungs.
December I spent in barbados with my family, Christmas shopping. Getting spoiled for my birthday. Snowboarding for the first time in years not being out of breath.
January 18th, 2012...I move to vancouver for a few months. What the rest of the year holds?...we shall see :)
This last year, I had my one year lungiversary, I beat cancer, I fell in love and planned a move to Vancouver. What a year! Man oh man oh man...what a freakin' wild year.
I started a couple years ago a tradition of looking back on my year month by month. You can view 2009 here and 2010 here.
Here is my synopsis of 2011.
January brought me my six month lungiversary and my first run down a city block. My first run up city steps. January made me fall in love with being able to jog.
February brought ear infections, headaches, fevers, and other infections. February brought me to a haemotlogist for low blood counts. February I experienced a bone marrow biopsy. Something I don't reccomend. It is MOST uncomfortable and sends my body into spasm shakes. February my results came back saying I had a healthy bone marrow and that I did not have Lymphoma. Later in the year, I would learn I did have lymphoma, it was just lurking somewhere else ready to attack.
March brought my first hospitalization. I had developed CMV virus and a psedumonus infection. March also brought with it the gift of being able to say "yes everything was worth it. Life is worth it now"
April brought my first adventure with my new lungs. I took my lungs to washington DC to visit my cousin. It was the best trip ever. It felt like I should have been in a movie, skipping and 'tra la la laing' the whole time. April brought the first time I blew up balloons post transplant. What a wonderful feeling to blow up balloons for a birthday celebration and not get winded.
May I played my first baseball game in years. I aced it.
May also brought my first tx tragedy. My friend Bree died. She was my age, my mentor, a fellow double lung transplant recipient, a guelph university alumni. She was my friend and I am so so so sad she had to leave this world only a year and 9 months after her life saving surgery. What a courageous and amazing spirit she was.
June brought summer and me having to fight another battle. A battle I never thought I'd have to go through, especially not so soon after transplant. June brought a false negative test to having lymphoma. A biopsy on the back of my nose. More hospitalizations. A cancelled jewellery show. A weakened girl. More CT scans. An MRI and finally a diagnosis of Lymphoma cancer.
July brought trips to the cottage. My first anniversary with new lungs. Planning of the 2nd annual CF for CF fashion show. July brought weekly visits to Princess Margaret hospital for doses of chemotherapy.
August brought me Tristan.
August brought the most successful to date CF for CF fashion show, raising over $30,000 and helping sponsor a family through transplant.
September brought me laughs and happiness with someone who I never thought would. September found us in a baseball tournament for Heather, a strong lady fighting sarcoma cancer.
October found me in Calgary visiting my friend. Another adventure. My first time seeing the rockies. October spawned an idea in my head...a move to vancouver? October was my first time going to a Leafs game.
November was a month of hope and renewel. My cystic sister got her call for new lungs.
December I spent in barbados with my family, Christmas shopping. Getting spoiled for my birthday. Snowboarding for the first time in years not being out of breath.
January 18th, 2012...I move to vancouver for a few months. What the rest of the year holds?...we shall see :)
This last year, I had my one year lungiversary, I beat cancer, I fell in love and planned a move to Vancouver. What a year! Man oh man oh man...what a freakin' wild year.
Subscribe to:
Posts (Atom)