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!

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.

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....

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!

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!

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 ;)

Another week down...

Well, it is 5:11pm on Friday, July 23rd. I have been so patient and open and calm. I have had my moments of fear and sadness, but overall i have been extremely patient. Since my last hospitalization when this whole process of getting on the transplant list started, i have known to just have faith and it will happen when the time is right. Well, I have waited and i am sick of waiting. It can't take it much more!!! I just want to get the show on the road. I think i feel this way because i have completed all my "tasks" at hand. I have all my medication lists, pharmacy lists, advance directive, doctors appointments, medications ordered, laundry done, special things for the hospital purchased, patio cleaned, desk cleaned, tp stocked up, and everything is in order. Well, there is a lot to do always, but I have been working hard this past 2 months and i am finally done with everything except packing my bag. I even backed up my computer today. I AM READY. I am ready for the thing I have been avoiding my whole CF experience.

I had a dream last night in which i pulled the CF out of my lungs and i could breathe.

I have been visualizing my new lungs, and saying the loving kindness mediation for my future donor and their family.

I have read up on lots of stuff about lung transplant.

I am ready.
I am strong.
I am going to kick ass!

BRING IT ON!

Right now i feel like the universe isn't in control, i can just see my papers sitting on someones desk at blue cross collecting dust, forgotten and lost.
Please don't forget me!

I am ready to live and fight and rock on.... now lets go!!!!!!!

Today is Sissy's Birthday

Today is my little sister's birthday. 22 years ago today, my little sister was born. My mom gave birth to what she told me would be a person who i could always count on and forever have as a friend. At that time she was just an exciting little baby doll to play with, and fastfoward all these years and she really is a built in best friend who is always there for me when i need her. Our sisterly bond has grown throughout the years. I respect her so much for her intelligence, her strength, her wisdom, and healing powers. She has such a kind heart, and compassionate spirit that I can't but help admire. Her drive and direction is focused and she is turning out to be the most amazing human being. She is my baby sister, but I admire and look up to her so much. Both literally AND figuretively. hehe... She takes care of me even on her birthday. She makes me feel so special. She loves to hang out with me even when i am gross and sick and spewing mucus everywhere. She loves me when my O2 is buzzing and when i can't catch my breath. She knows how to massage my body to make it feel better. She knows where i hurt, she knows how to make me laugh, she knows me inside and out. And she is a damn good CPT thumper. You should have heard the horses tonight :) She has gracefully lived as the sister of a CFer, a chronically ill sister who always gets the attention. She has put up with the pain we suffer due to this illness, she puts up with me, with the disrupted plans, the vacations not taken, the fun not had, and she still loves and supports me. She is a glue in the family. She is the calm. She is such a strength for me and my parents. We love her so much and i am so happy to celebrate all these birthdays with you. Today, Sara, you are 22 and I love you. I can't wait to celebrate your next birthday with you without CF interrupting any part of the day :)

Feeling the love

I wanted to give a shout out to my dear friend Courtney. We have been friends since Pre-school, Ruth Wood Pre-school. She was a sweet girl and very shy. I was a gregarious little one, and we found a lot of comfort and a great friendship in each other. She once helped the teachers find me when I had gone missing... I fell asleep on the toilet (yes, CF and bathroom issues, it started young... haahahaha) She brought them in to find me. What a hero.
I don't know if she remembers, but I remember when I was 4 and hospitalized for the first time as a child she came to visit me. That is really big for a 4 year old to come and visit their friend in the hospital. It is a touching memory that i still have to this day.
Now, 25 years later, She is pregnant and I am embarking on this gigantic life changing experience of a lung transplant. Weird how at this time in our lives we are experiencing such big life events. Not only the two of us, but also in middle school to high school we had a 4 some of us girls. Anna, Courtney, Emily, and Betsy. Over the years we have all gone in different directions, but all in our 29th year we are all celebrating gigantic milestones. Betsy just had her first child, Courtney will be having hers, I will be getting a lung transplant, and Emily will be getting married. Even more coincidental is that Courtney's baby is due on Emily's Wedding day. How would our childhood selves think to see us all in these different places at the same time? It really boggles my mind and makes me think about our karmic connection together.

Anyways, Courtney and I got to see each other this weekend and she brought me a wonderful prayer quilt, that her church worked together to make for me, with wonderful prayers for the perfect donor and good health. It means so much to me, and she ordered it in purple and beach theme, my favorites!!!! I am proud of the quilt and can't wait to take it with me to the hospital and bring in the prayers. Just wanted to share it and let you all know, I feel so much love around me right now. I feel your good thoughts, and i hold them all close... Please don't stop, we are only just beginning this journey together...

Checking in

I haven't had anything I have been inspired to blog about. I feel guilty not sharing my experiences, as I know that when you stop momentum things get hard to start doing again. I was enjoying my birthday week. I had so much fun this week doing a variety of things. However, I realized that i am all fun-ed out. I am exhausted. I need to rest this week. I have used this week to try to be "normal" as all 29 year olds are supposed to have a lot of fun with their friends and celebrate their birthdays. However, I realized today as Casey and I got back from Costco, and i had put all the stuff away and re-organized the cupboard, that I was DONE. I need a few days off to just rest, and not pressure myself to be "normal". I need to relax, and tootle around the house. I can't socialize and expend my energy, I need to work on saving it. I still have a few things i need to get organized before I get put on the transplant list. Advanced Directive written, read about the meds I will be taking, pack a hospital bag, update my medication list and print out a few copies... Not too much, but still....
AND it is my sister's birthday this week... YAY. So we will have more celebrating, so rest is certainly in order.
In other news...
This weekend there were 2 lung transplants at Stanford and my sister got to go and pick up the lungs of the recipient, and the donor's trachea. Pretty cool huh? There hasn't been a transplant in over a month and a half and then 2 in about 24 hours. My poor sister didn't sleep this weekend, but she got some awesome experience, and i got to see her one more time than i had expected to. so YAY. And YAY for those who got new lungs and a gift of life, and my heart goes out to the donor's families....

Birthday!

Today is my Birthday!!! Lalalalalala....
YAY!!!!!!! I am 29! I made it!!!!!

The Miracle, the Magnitude

Today I am feeling the magnitude of what is going to take place. The tears are rolling not for myself, but for my future donor's family. For the gift that i will hopefully be given. Just simply for the opportunity I have to even get a shot at this... It is an amazing miracle. The why me's are beginning.... The unfairness for others, the unfairness for me, the miracle for me, the opportunities, just simply the BANG that will happen when my life and my family's intersects with the tragedy of another's...it is just HUGE. Not sure why I am so lucky to be in this situation, but I am trying to just BE in the humble, thankfulness, and acceptance of what is of it all...

Sisters RULE!

Yesterday I had a great day with my sister! She helped take care of me while Casey went to ride in the Bike for Breath ride, to support lung health! He rode for the Second Wind team, a group that supports the lung transplant community. She and I went for an adventure at the nail spa!!! YAY! This was my birthday present a nice mani/pedi. We both got french manicures on top, and i got this ridiculous bubble gum blue on my toes. My sissy suggested a yellow flower on the big toe to complete the crazy package. It looks so fun and cute. My style is not always understated ;) Sara got a really pretty Purple mate on her toes. Then after we had a nap and some Pho. It was a great day! Again, SISTERS RULE!!!!!!!

O, O, O, O, O ,O, OMG

My Blood type is O! I knew that Usher song was for me... hehehehe. It is the most common blood type. Well, it is really here, the next working day my case will be presented to the whole transplant team. They will review my case and hopefully, more than likely, approve me for a double lung transplant at Stanford hospital medical center. Once this approval takes place they will submit it to my insurance and get approval that they will cover my future immune-suppressant drugs. They have 7-10 days legally to get back to us, and then once the approval from insurance comes in, the Transplant coordinator will call me, and viola, i will be listed (with my approval of course). So now i sing loud and proud...

"oh oh oh oh oh oh oh oh oh oh oh oh OH MY GOD".........

Jack the Laundry Cat

This would not be my blog without my cats... here is Jack!

Some days are up some days are sleepy

Today is one of those days where i realize i am tired. I am not the spring chicken I once was. I had a day full or errands yesterday, and today, I must rest. I had ideas of doing more, maybe actually driving myself somewhere ( i have not driven since my last hospitalization) but now i am thinking resting is in order. It is such a tough balance between pushing myself to stay strong, be active, and doing too much and knowing when i need to rest and sit on the couch and nap. I rested all weekend, after my exhausting week, but I need to rest again. Everything takes so much energy these days.... hence why my good old momma is helping me. Oh wait, she isn't old, she is just GOOD.

Yesterday I officially completed all of my testing for the transplant evaluation. I had to collect my pee for 24 hours and then drop it off and have blood (only one tube) taken. We also turned in the contract that my caregivers had to sign to agree they will take care of me for the 3 months after transplant(and obviously more if needed).

I also picked up my new glasses for long distance/every day wear. I don't have to wear them, as i see ok on my own, but i have astigmatism that just began to bother me. So i got some cute cole haan glasses from costco (I LOVE COSTCO) and i am trying to get adjusted. My experience with them is just like when we got our 47inch HD TV. Our previous TV was just fine, you could see it, it was a little blurry, but the main idea was there. But when we got the new TV life changed and the whole tv experience was enhanced! My glasses feel like that. Everything is a little be sharper and shiny-er. It is very nice that i don't need them all the time, but wearing them makes the world look pretty...

Ok, i need a nap now....

It's no lollygagin Picnic...

Welp, done. Finished with my week of tests for the transplant evaluation. All I have left is to collect pee for 24 hours. But the exhaustive part is done. Today the magnitude of what i just accomplished hit me. Holy crap, did i really just do that? The thing that i was so scared of doing for years before this? The place i never wanted to be? The place i have been avoiding my entire life? It is here???????

Yup.

You don't get a transplant because you are doing well. You get a transplant because you are at the end of your life, without the intervention of a transplant. I am almost 29 (in 10 days) and i am at the end of my life without this? Well then, BRING IT!!!! I have so much more to do, CF does not get to take that away.

I guess the possibilities of the future is where i got the strength to get through it.

It all started on Tuesday at 915am. Fasting for 12 hours for blood work. They drew 14 tubes. Then we met with the transplant social worker for 2 hours as a family. They must assess the strength of your support system and all of your mental capacities.. i hope we passed ;)
After that meeting we had lunch, then a chest-xray, EKG, and Echocardiogram with bubble. Ending the day with a bone density scan, getting out of there at 415pm. Then off to start the nebulizer in the car to get started on my treatment we had to do as soon as we got home.

You can say i was tired.

Wednessday was less intense, but exhausting none the less. I had a pulmonary function test, Arterial blood gas, 6 minute walk, and CT scan of my entire body (except my limbs). The ABG was my most anticipated. One of those things that has developed a bad reputation. It is known as scary and painful. But luckily i had a kind RT, who used a nice amount of lidocane, and had me not watch the procedure, and it went without any pain. SO NICE. The i had to do the dreaded full pft, the hardest part about the PFT was that now that i am O2 dependent I had to do these varieties of breathing exercises in a machine without the O2, which makes it that much more exhausting. So i was seriously fatigued once my blowing was over. Then i had to proceed to do my 6 minute walk. That was not too difficult as i got to walk with my O2. I actually walked so hard, I almost walked 1/3 of a mile, which is pretty good (which doesn't show my sickness) but oh well, i like to do my best!

After all that my mom and i went for a walk to pass some time and then proceeded to the CT scan where they scanned my body. I got to see the pictures, and i could see how gross and destroyed my lungs are. So sad, they have carried me a long way, but it is time to trade them in for a new model.

The next day was More blood, 11 more tubes, An Esophogram, and the Transplant clinic appointment. I got to drink barium and watch it go down into my tummy... fascinating. They told me to drink a lot of fluids because the barium can turn to concrete, NOT what i need, so i have been drinking and drinking all week. I think all systems are go, so that is good.
The Transplant clinic was long. It was great because we could ask as many questions as we wanted. I was examined and told that I passed all the tests, but failed the lung portion, Just how we wanted it ;) So the determination is that I will be accepted into the transplant program. Dr. Weill will present my case to the team at the next meeting (monday July 12) and then we will be able to get on the list soon after that. HOLY CRAP.

My initial reaction was joy, and clapping with excitement. I know this is what i want and need, but man, is it big!!!!!! After that day I was totally exhausted and still had one more day to complete.

Friday was the Cardiac Catheterization, or as i was informed was actually an angiogram. I was NOT AT ALL PREPARED for what was instore. I had to check in at 10am, there was 2 hours of prep (including weed wacking my girl parts), and then the procedure, and then 30 minutes until they could pull the sheathe out from my groin, then i had to lay motionless without lifting my head for 2 hours, with no visitors. I stared at the ceiling. I had been given drugs during the procedure but nothing that made the wait any better, i was too conscious for that. So it was LONG and boring, and i had to supress my cough. Then they moved me to sitting up, and my mom was finally allowed to come back with me. To say the least i was grumpy. My poor mom has put up with a lot of grumpy, frumpy sicky Anna. She is such a trooper. I don't know if i would be able to stick by me like she sticks by me. I love her, and don't know how i could do it without her.

So now we are done, and we gain back the strength to keep going. I have been resting and sleeping today. Not to mention i have a incision in my crotch ;) I have to rest it and not lift anything over 10 lbs for a while. Well, in sum, this week was No lolligagin picnic.....

Half done...

Hello to all of those out there in cyber land...

I am half way through my week of Pre-transplant testing and evaluation. I have been running long hours and needing rest so i apologize that i have not had time to keep you updated on the goings on of the testing process. I will give a full report when I am done and can take a breath or relaxation again. I must say thus far, with most of the testing finished, it was NOT even sort of as bad as I was anticipating.

I think that having my mom push me around the hospital instead of hoofing it, has made a huge difference in keeping my energy level up, and i am thankful for her companionship and support!

Today is an Esophogram and "phase 2" blood draw, and transplant clinic visit. So i figure meeting with the doc will tell me a lot about how this week has gone... and what to expect next. I will keep you informed.
Tomorrow is the dreaded heart catheterization, and i am THRILLED for that. Luckily drugs will be involved, so that will be helpful!!!!

That is all for now, time for a treatment.
Wish me luck....

If you want to see my mom's updates on the week please check out
www.miracleonorder.blogspot.com