Saturday, July 31, 2010
How many tubes does it take to get a transplant?
My life with CF is full of coughing. Cough, cough, cough. Spit, spit, spit. CF people have different mediums to dispose of the nasty mucus that clogs our lungs each and every day. For me, the least disgusting and most economical is rolls of TP. I don't know HOW may rolls i have gone through in my life, but my mom and I thought it would be funny to see how many rolls i collect until i get my transplant. Just to give you an idea, Casey and I must buy a huge thing of TP at costco almost every month because i go through so much!!! So right now, I believe there are 8 rolls i have collected (some were ALMOST empty at the time i was placed on the list) but i have 8 rolls collected thus far... lets see how many it takes!
Hidden Blessings
It is amazing to see the support that has been pouring in from all of those in my life past and present who have found out about my new adventure. I must say that I am enjoying reconnecting with everyone and getting emails of encouragement provides me with a lot of strength and support. I know with all of these people sending me positive vibes and prayers, and love I can do anything! I also know that my future donor's family will also feel the gratitude we send now, and when the fateful day arrives.
Today I received a message on facebook from a friend from high school. I was so touched because she sent out a message to our high school class, to let them all know what is going on and to encourage them to keep me in their thoughts... how wonderful. That was really touching...Thisby, Thank you for that. It really means a lot to see jestures of thoughtfulness and kindness.
I can feel all the support from all over the world!
Today I received a message on facebook from a friend from high school. I was so touched because she sent out a message to our high school class, to let them all know what is going on and to encourage them to keep me in their thoughts... how wonderful. That was really touching...Thisby, Thank you for that. It really means a lot to see jestures of thoughtfulness and kindness.
I can feel all the support from all over the world!
Friday, July 30, 2010
Day 3
It is day 3 on the transplant list, and honestly, I don't know if it has really hit me that I am REALLY on the transplant list. I don't know if it will until i am actually at the hospital waiting for surgery. Maybe once I have waited months and months and no call.... that is when it will hit me. Who knows. I just hope I don't have to wait THAT long.
I haven't had the mental energy to deal with the magnitude of my situation as the night before I got the news that I was listed, my genius upstairs neighbor lit his kitchen on fire in the middle of the night. Luckily it was put out quickly and the firemen got rid of the smoke (none effected us). But man, what an idiot. Most people feel sorry for those who have fires in their home, but the Firemen were saying that he was full of BS. Thank god someone else realizes this. It is his stupidity that is the problem. I just hope that I survive living near him ;)
The Irony in life is that this unfortunate person that is my neighbor has survived 50 something years, and yet sadly, yesterday I learned that a childhood neighbor and former lifeguard at Greenmeadow died an untimely death. To which the cause is unknown currently. How could this be? I am the young person who is supposed to die... why do i get the chance to keep living while he didn't even get to realize all of his dreams? Why has my upstairs neighbor survived all these times while constantly doing idiotic things and risking his life? The world is very confusing and the universe works in mysterious ways. My thoughts are with the Schriebers at this time, and know that they must be devistated in despair. I just hope that they are able to find peace at some point, and remember the good life and good times they had with him while he was here.
I haven't had the mental energy to deal with the magnitude of my situation as the night before I got the news that I was listed, my genius upstairs neighbor lit his kitchen on fire in the middle of the night. Luckily it was put out quickly and the firemen got rid of the smoke (none effected us). But man, what an idiot. Most people feel sorry for those who have fires in their home, but the Firemen were saying that he was full of BS. Thank god someone else realizes this. It is his stupidity that is the problem. I just hope that I survive living near him ;)
The Irony in life is that this unfortunate person that is my neighbor has survived 50 something years, and yet sadly, yesterday I learned that a childhood neighbor and former lifeguard at Greenmeadow died an untimely death. To which the cause is unknown currently. How could this be? I am the young person who is supposed to die... why do i get the chance to keep living while he didn't even get to realize all of his dreams? Why has my upstairs neighbor survived all these times while constantly doing idiotic things and risking his life? The world is very confusing and the universe works in mysterious ways. My thoughts are with the Schriebers at this time, and know that they must be devistated in despair. I just hope that they are able to find peace at some point, and remember the good life and good times they had with him while he was here.
Thursday, July 29, 2010
WARNING PROFANITY BELOW
DO you know what really chaps my ass?
Ridiculous things that Doctors say.....
Wow Anna, you are really stable. 5 hours of treatments? Maintaining weight? Good blood sugars? Staying out of the hospital? No bowel blockages? Working on building your muscles? Keeping up with sinus rinses? Stable pulmonary function test?
YOU REALLY NEED TO BE WALKING 20 MINUTES IN THE MORNING AND 20 MINUTES AT NIGHT. AND GOING TO THE STORE AND WALKING AROUND THE HOUSE DO NOT COUNT!
WHISKY, TANGO, FOXTROT
WTF
for those who are unfamiliar.... (like momma) WHAT THE FUCK!
I apologize for the vulgarity but this really chaps my ass. I do EVERYTHING right, i walk when i CAN, and have TIME... but honestly? Do I not finally get a break? I am SUPPOSEDLY dying isn't that why i am on the TRANSPLANT LIST? Isn't that the time when they finally don't have to pester me to do MORE than humanly possible?
I Completely understand that exercise is important, and we try to keep me moving as much as we can, but you can't ask someone to do that much... you can't ask someone who has so little energy they need their fucking mom to make them food, and help them clean, to go out twice a day and walk around the park with their O2, on top of everything else. Do you know what exercise means to someone who can't breathe? It means doing the exercise for the given amount of time, and resting for the the same amount or more time, and feeling like absolute shit while doing it! THAT is what it means.
Readers, do YOU have time in YOUR lives to go out and walk 2o minutes twice a day? Probably, but i bet you don't do it. Do YOU have time to do 5 hours of treatments? NO. Imagine, you are balancing a plate piled HIGH with spaghetti, and you are trying to keep your meatballs on without them rolling off... and someone comes and puts a big old Piece of bread on top, it all falls down. THAT is how i feel.
That comment made me feel completely disrespected about where i am in my illness. Completely unseen by the doctor, who i would think out of everyone would understand. My lung function is at 28% when i walk I need 6 Liters of oxygen. How do you fit that in on top of everything else? Isn't feeling good and being stable enough?
It just chaps my ass....
Ridiculous things that Doctors say.....
Wow Anna, you are really stable. 5 hours of treatments? Maintaining weight? Good blood sugars? Staying out of the hospital? No bowel blockages? Working on building your muscles? Keeping up with sinus rinses? Stable pulmonary function test?
YOU REALLY NEED TO BE WALKING 20 MINUTES IN THE MORNING AND 20 MINUTES AT NIGHT. AND GOING TO THE STORE AND WALKING AROUND THE HOUSE DO NOT COUNT!
WHISKY, TANGO, FOXTROT
WTF
for those who are unfamiliar.... (like momma) WHAT THE FUCK!
I apologize for the vulgarity but this really chaps my ass. I do EVERYTHING right, i walk when i CAN, and have TIME... but honestly? Do I not finally get a break? I am SUPPOSEDLY dying isn't that why i am on the TRANSPLANT LIST? Isn't that the time when they finally don't have to pester me to do MORE than humanly possible?
I Completely understand that exercise is important, and we try to keep me moving as much as we can, but you can't ask someone to do that much... you can't ask someone who has so little energy they need their fucking mom to make them food, and help them clean, to go out twice a day and walk around the park with their O2, on top of everything else. Do you know what exercise means to someone who can't breathe? It means doing the exercise for the given amount of time, and resting for the the same amount or more time, and feeling like absolute shit while doing it! THAT is what it means.
Readers, do YOU have time in YOUR lives to go out and walk 2o minutes twice a day? Probably, but i bet you don't do it. Do YOU have time to do 5 hours of treatments? NO. Imagine, you are balancing a plate piled HIGH with spaghetti, and you are trying to keep your meatballs on without them rolling off... and someone comes and puts a big old Piece of bread on top, it all falls down. THAT is how i feel.
That comment made me feel completely disrespected about where i am in my illness. Completely unseen by the doctor, who i would think out of everyone would understand. My lung function is at 28% when i walk I need 6 Liters of oxygen. How do you fit that in on top of everything else? Isn't feeling good and being stable enough?
It just chaps my ass....
Tuesday, July 27, 2010
Life changed today, and therefore my blog does too!
Today the culmination of all the work finally came together. I am OFFICIALLY LISTED FOR A DOUBLE LUNG TRANSPLANT. I received my Lung Allocation Score (LAS) and it is 37.7074. That is a numeric status symbol. My placement on the transplant list is dictated by the number, the size of my lungs, and my blood type. It means i am in the "transplant window" and poised to have a call at any time, which will change my life forever! Oh yea, and I am number 13 on the list! LUCKY 13. I can't believe it. It has always been my lucky number and it is true again today!
Today Emily paid me a visit and presented me with a beautiful gift. A small string bracelet, in which to wish upon for new beginnings, the symbol of re-birth. No longer than a hour after she put it on my wrist, she had to leave for her baby sitting job, and as she left, i walked to the kitchen to start cleaning up, and the phone rang. This is a magical bracelet and will be with me the entirety of my transplant journey. It is supposed to fall off when my wish comes true... so i suspect that it will come off when my surgery takes place ;)
And finally, the title of my blog is changing from Anna Banana's Variety Show, to My life on the T-List. As this chronicles my journey, i figured what is better than a tribute to my pop culture and a take off of the show my Life on the D-list. It is a tribute to the silliness of celebrity. I hope you enjoy reading about my journey and my Life on the T-LIST!
Today Emily paid me a visit and presented me with a beautiful gift. A small string bracelet, in which to wish upon for new beginnings, the symbol of re-birth. No longer than a hour after she put it on my wrist, she had to leave for her baby sitting job, and as she left, i walked to the kitchen to start cleaning up, and the phone rang. This is a magical bracelet and will be with me the entirety of my transplant journey. It is supposed to fall off when my wish comes true... so i suspect that it will come off when my surgery takes place ;)
And finally, the title of my blog is changing from Anna Banana's Variety Show, to My life on the T-List. As this chronicles my journey, i figured what is better than a tribute to my pop culture and a take off of the show my Life on the D-list. It is a tribute to the silliness of celebrity. I hope you enjoy reading about my journey and my Life on the T-LIST!
Monday, July 26, 2010
Swimming Miracles
TWENTY TWO years ago Greenmeadow won the JSSL chamionship meet. I helped them win. I won the high point trophy for 6 and unders. It took until this past weekend for Greenmeadow to win the JSSL championship again. They are going to put my picture from back then, with my wonderful trophy back up on the record board, in honor of our team. I find a strange karma that at this time 22 years ago I was beyond fit and living as a healthy little kid. I was stronger than other kids my age. I was a "miracle child". How I came from a devastating hospitalization and diagnosis to a record setting swimmer. They even wrote an article in the paper about me, if i remember correctly.
Now, 22 years later, the entire lifespan of my sister, we are waiting for me to do it again. It is time to be the"miracle child" once again. I must defy the odds of this disease. I must conquer it, i must beat it, i must win this championship again. However, it is different this time around. I am not in control, I can't use my skills and my athletic ability is pretty much gone at this point. My mind is what I must keep strong. My will power and my ability to persevere must be strong. My ability to "let go" must be strong.
I must admit, it was easy to win the high point trophy. I didn't have to try very hard. I just did what i did, and i did it well. I don't mean to brag, but even back then, i just did my best. My best at that point was award winning.
This time around, working to stay strong to get a transplant, that is hard. 5 hours of treatments, controlled life, structured eating, low energy, supplemental oxygen. That is what is tough. I must persevere through it, and hopefully will come out on the other side.
It isn't a guarantee. Swimming for me was a guarantee. I went to practice and i won races, it was pretty simple. This is hard. I have no control. I just have to have faith... faith that I can pull out another miracle. Trust that the universe will align and i will be able to have working lungs again. Have faith that my new lungs will give me the strength to get back in that pool and start winning races again. I promised Ana that i would swim with her at the Transplant Olympics when i get my new lungs...so i must keep my promise, and i must live the miracle once again.
Addition...
After reading my mom's blog entry, which was almost the exact same entry, I am encouraged by the memory of my Dad's cheers. I have watched the home movie he made many times....
"Go ANNA GO! GO Anna GO! Go Anna Go Anna Go Anna GO ANNA! YAAAAAAAYYYYYYYY!"
Love you Dad! I will keep going as long as you keep cheering me on!
Now, 22 years later, the entire lifespan of my sister, we are waiting for me to do it again. It is time to be the"miracle child" once again. I must defy the odds of this disease. I must conquer it, i must beat it, i must win this championship again. However, it is different this time around. I am not in control, I can't use my skills and my athletic ability is pretty much gone at this point. My mind is what I must keep strong. My will power and my ability to persevere must be strong. My ability to "let go" must be strong.
I must admit, it was easy to win the high point trophy. I didn't have to try very hard. I just did what i did, and i did it well. I don't mean to brag, but even back then, i just did my best. My best at that point was award winning.
This time around, working to stay strong to get a transplant, that is hard. 5 hours of treatments, controlled life, structured eating, low energy, supplemental oxygen. That is what is tough. I must persevere through it, and hopefully will come out on the other side.
It isn't a guarantee. Swimming for me was a guarantee. I went to practice and i won races, it was pretty simple. This is hard. I have no control. I just have to have faith... faith that I can pull out another miracle. Trust that the universe will align and i will be able to have working lungs again. Have faith that my new lungs will give me the strength to get back in that pool and start winning races again. I promised Ana that i would swim with her at the Transplant Olympics when i get my new lungs...so i must keep my promise, and i must live the miracle once again.
Addition...
After reading my mom's blog entry, which was almost the exact same entry, I am encouraged by the memory of my Dad's cheers. I have watched the home movie he made many times....
"Go ANNA GO! GO Anna GO! Go Anna Go Anna Go Anna GO ANNA! YAAAAAAAYYYYYYYY!"
Love you Dad! I will keep going as long as you keep cheering me on!
Sunday, July 25, 2010
Christmas, i mean Retreat is coming!
I realized that this week is the week before the CFRI teen and adult retreat!!! Holy Guacamole! I can't believe how fast it has snuck up on me. I have always prioritized retreat in my life, and this year is no different. I have not slept at the retreat for the past few years because I was not able to sleep well, and i found that sleeping at home, and driving to and from was the best option. However, this year is different. With 5 hours of treatments, there is no time to do this, so i am making the commitment of staying at Vallombrosa for the entire week. Obviously if it gets too much I can go home, but i am planning to stick it out to recharge my batteries and live it up with my wonderful CF buddies.
I decided that now that I have my trusty Bipap for sleeping, my sleep won't be so disrupted as it was in the past. I am hoping that this helps me get through the week. The support of everyone there will also get me through. My goal though is to stay well, and not backslide while i am there. So this week is full of getting ready and resting for the busy week to come. I always get so excited for retreat. I feel like a kid waiting for Christmas, oh wait, i mean myself waiting for christmas ;)
I decided that now that I have my trusty Bipap for sleeping, my sleep won't be so disrupted as it was in the past. I am hoping that this helps me get through the week. The support of everyone there will also get me through. My goal though is to stay well, and not backslide while i am there. So this week is full of getting ready and resting for the busy week to come. I always get so excited for retreat. I feel like a kid waiting for Christmas, oh wait, i mean myself waiting for christmas ;)
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