OY! I just got back from a walk. We walked around the park twice, but before that I did 30 squats, 50 calf raises, and 12 full pushups. NOW, i have to do a treatment. What was i thinking? I guess i was thinking i want to kick this transplant's butt!!! Well, here are some more pics of all you cute Anna Banana Bunchers!

Rebecca... friend from Kindergarten sportin the bananas!

Tara, CF buddy showin the love

The Big bananas Momma and Poppa sportin their shirts in their new backyard (one day my mom will get to go back there)

Melissa my new CF buddy talking to me on the computer... freaky huh?

Anna Banana's Bunchers

Here are more pics of you wonderful friends and family and supporters out there....

Thanks for all the love and support. Keep those prayers and good thoughts comin!

Linda, Maggie, Isa ... a chance meeting of the bunchers in Chicago

Dr. Leary, Lizette, and Joan... my whole Dentist office!

Grandpa Bud and Uncle Jimmy!

Banana Buncher's Unite!

Hey Everybody!

Well, I have not been inspired to write the past few days. I am sorry about that, just nothing inspiring happening right now. No news is good news on the health front :) Just waiting for something... sometimes i forget what i am waiting for, then it hits me... OH, for my life to drastically change! Oh yea, just that. But I wanted to start posting some cute pics I have been receiving from you all out there in your shirts!!!

Johan Sportin the shirt!

Alexandra sportin the shirt

Courtney and the new baby Matt Sportin their shirt

Emily at Yakko (the fav sushi place) wearing her shirt!

Thanks guys for all the pics...Stay tuned for more tomorrow... keep em comin if you haven't already gotten out your cameras!

60 Days!

It has been 60 days on the list! Here i am, still waiting. I thought it would be a good time to post an update on the tissue rolls! There are 59 rolls that i counted this morning! It looks like i am averaging about a roll a day, and it isn't the end of the day yet! You know how i posted that Jack is part of my bunch? Well, he is the guardian of the TP rolls...

Amendment: tonight on day 60, I reached 60 ROLLS!

Pre-transplant clinic

I had my first pre-transplant clinic appointment yesterday and it was very enlightening. Our center does not incorporate meeting the transplant surgeons into the evaluation process like other centers do. Therefore, I made a special request to meet one of the surgeons. He came by yesterday with one of his residents, and they explained the whole procedure to me. I already knew quite a bit of what they told me, but i really wanted to hear it from the horse's mouth, so to speak. So he answered my crazy freak out questions, which he actually had some good answers to, instead of just telling me not to worry about it like some people might have. These were my questions:

What happens if there is an earthquake?

He reassured me they would continue on despite an earthquake, and that the hospital is rated to withstand a 8.5 quake (at least that is the hope). How he actually knew that i am not sure, but maybe i am not the first person to ask this question.

The next question was spurred on by watching Boston Med this summer and learning how many things can go wrong, and the intricacy of getting the donor organs to the recipient.

What if something happens to the lungs on the way to the surgery?

He reassured me that if i was all prepped and my lungs out, they could keep me alive with the bi-pass machine (heart/lung machine) for up to a week, and if that happened I would be sky-rocketed to the top of the list, and they would find organs for me from all over the country). That made me feel MUCH better, honestly i know it seems outrageous, but if there are answers for even the most outrageous questions, then it really can't be that bad, right? RIGHT!

My last question was a Grey's anatomy question and a one from the recent headlines...

What happens if there is a shooter during the surgery?

He smiled and looked at me and my mom, and said if it was like the situation that just occurred at john's hopkins, then it would be my mom who would be the shooter, and he looked at her and we all kind of laughed. So he made me feel a lot better ;)

Not that i spent all my time worrying about these things, but I did have them swirl around my mind from time to time. After he answered my questions he shook me and my mom a bit with his next statement. He told us that they had denied an offer for lungs for me today. The lungs were not good enough and coming from a far location, indicating they had been passed up by others as well.
WOAH BABY! That means that I really am on the radar and they are looking out for me. You would think that maybe this made me feel disappointed? NO WAY. I have been kind of nervous that because there have been so few transplants lately that they would start taking lower quality lungs. But obviously this is not true. It made me feel even more confident in my team to keep my best interest in the forefront of their mind.

After the surgeons left, Dr Weill and the new fellow came in and Dr. Weill looked me in the eye and told me to "be ready". He thinks it is going to come soon. He mentioned they have been getting more offers than they have, and they also mentioned these things are cyclical, and therefore indicating it will pick up at some point. I am taking the fact that my name did pop up that it will be soon, but no one knows. But I honestly will say that I am thinking in the next month things might happen... it isn't wrong to believe my doctor is it? I know he isn't psychic and no one knows, but I want to think it will be soon. i want to think that I will get some relief of this massive amount of treatments and the mundane day to day life that we are living in. I want to believe it, so i am going to... and then see what happens....

Happy Birthday Mother Dearest

Today was My wonderful mother's birthday. I won't say how old she is because a woman never tells... well at least her daughter can't announce such things on the internet ;) My mom has done so much for us this year... she has sacrificed her whole life for me. I truly appreciate it and hope that she knows how crucial she is to my surviving this life with CF. I couldn't do it without her. Mom, I thank you for every meal, every O2 tank that you have filled, every cup of water, every toilet paper roll you have thrown to me, Every treatment beating, every errand, every grocery trip, every frozen yogurt, every bowl of cereal and berries, I thank you for all of it! You are the best mom ever! I know how cheezy that is, but i really really mean it. I love you with all my heart forever and ever!

To celebrate today we made cupcakes. By mom's request we did lemon cake with lemon buttercream frosting. With a nice lemon drop on top for garnish. YUMMMMM. Then we went to YAKKO, the family favorite for dinner. As always it was delish. But i do think we might need a break from it for a while, with 3 birthday dinners there in a couple months, it might be nice to take a break. After dinner we came back to my place for cupcakes, presents and GLEE. Mom's favorite present by far was the Cash cab home game. I am sure there will be hours of fun to be had! HAPPY BIRTHDAY MOM!

How far I have come....

Today I received an email that caught me off guard. It made me realize how far I have come in my journey with CF, illness, self acceptance, and transplant.

This year I was obviously at the CF retreat with an oxygen cannula wrapped around my face, and pulling my cart with the steaming O2 tank. Everywhere I go, O2 goes too! CF camp and retreat have always been a place where I learn a lot about the human condition, and at CF camp a long time ago, I discovered a quote on the back of a Tshirt. The quote was, "never let your fears stand in the way of your dreams". I have always had this quote running through my mind over and over, with each challenge that I face in my life. Whenever something difficult comes along I find strength in this quote. If a challenge stood in the way of my dream coming true, i would continue to push through.

Where am i going with this? How does this relate to an email? I will get there.. keep with me.

Well, when I got sick and had to start wearing oxygen, it terrified me. It symbolized a new stage in this disease, end stage. WTF? how did I get here? I do everything right! I do all my treatments, I take all my pills, I always eat well, I give back to my community, I stay active and involved in my life. Why did this happen? Well, it just is. CF is a rotten disease and it just is this disease. Some people are "lucky" or win the genetic lottery with CF and just don't progress in the same way. I honestly was lucky a LOT in my life. It always could have been worse. There are things that my friends have gone through that I didn't have to suffer through. But now, I am facing the realities of this disease, by no fault of my own. NO FAULT. But i saw this Oxygen tank and cannula as a symbol of utter FAILURE. Failure that I had let this disease win. But you know what? It didn't win. I didn't give up, i didn't surrender. I have continued to live my life strong, and to the best of my ability. I am not going to say some bull shit inspirational shit like "it made me try harder and made me push more and more, and presented me with another challenge to overcome." No, I just came to acceptance of where I am.
After many years of this disease creeping up on me and once i realized transplant was near, I went through my grief of the loss of my abilities, and my health, and my independence, I made the choice to embrace this new life. You heard me right, EMBRACE this new life!

Instead of resisting it, I would take on the the help, i would change my lifestyle, i would let people help me. I always wanted to fight it before, but this change didn't mean i surrendered. I didn't put up a white flag and let CF win, NO NO NO. I accepted where i am and just let it be. You want to know what happened when i did this? My health finally stabilized. I stopped declining at such a fast pace. I became whole again as a person. My body is sick, but my soul is whole and strong. I have so much left to do on this earth, and that is why I must take this time to be needy and allow myself the space to "be sick" and wait for new lungs.

I used to be embarrassed to be sick, but it is not an embarrassing thing, it is a wise thing. I realized this today. I have embodied all that I was terrified of before, as a young person with CF, holding on to 50% lung function. This was the most terrifying place for me to end up, but you know what? I am still the same person, and I am going to get the most amazing opportunity to live a life I always dreamed of. It makes me tear up writing this because I know how far I have come. But also how far I have to go.. I will have to continue this acceptance as this disease progresses if lungs don't come soon enough. And also through the changing process that I have no control of when the call does come and i do get new lungs. So right now I must be with I have today, and live it up the best I can. I can't worry about what anyone else thinks about me, I must live the best life i can live, O2 cannula or not.

This is where the email comes in...
Because I have been involved with the CF community for a long time many people know me personally. I received an email today from CFRI asking if it was alright for them to use pictures of me with my O2 in the newsletter. My instant response was "OF COURSE!" Then i stopped and realized this was very considerate, because the old me would have said,"no way jose". I do remember thinking at one point "no pictures of me will be taken when I am sick". But i have decided that would be just denying a part of my life. What is wrong with me now that isn't worth looking at? I am still the same person. I still love my friends, family, kitties, fishing, psychology, watching TV, swimming, the beach, the sun, the water, good food, tropical islands, learning, and living... my answer is YES! I want to remember this, because this is me!

Happy Anniversary

Today we celebrated our love with lobster! We went to the Lobster Shack in Redwood city. It is DELISH! When we got there, there was a line out the door, and when we left, there was a line out the door. It is unbelieveable how busy they get. We even got there at 6pm on the button, and all the tables were full! Luckly after we waited in line, a group was just finishing up and we snagged a nice table. We went all out because it was our anniversary. I got a BOWL of lobster bisque and Casey got a cup. We both got lobster rolls. Casey got a mix of two, the naked roll and the maine loster roll. I just got the naked roll. The naked roll consists of fresh buttery soft toasted bread, STUFFED with fresh cold lobster, and a side of melted butter. SOOO good. It makes my mouth water just typing this. The Maine lobster roll is a mix of light mayo and green onion on the lobster, in the same fresh, toasty buttery soft bread. They come with Fries, bread and butter pickles, and coleslaw with dried blueberries. It is so yummmy! I got a rootbeer on tap and Casey got a nice REAL beer on tap. We ate so much! It sure was good. SOOOO yummy!!!!! Well, here is to another year together! I love you Casey!

Anna Banana's Bunch Shirts are comin' your way!

The shirts arrived yesterday. They look fantastic!!! I am really excited. We are not rushing, but getting to it and going to get them out in batches. We got them organized by size and style, and going from there. Tomorrow we will try mailing a batch and see how that goes. I am trying to be like Santa and I have made my list, and checking it twice :) We have a system and i think it will work to stay organized! I hope you guys are excited because I know I am. The shirts really could not have come out any better... you will LOVE them!

When I was 9...

When I was 9 I played with "transplant teddy" at CF camp. Ana and Isa brought it for us as kids with CF to learn about...who would have guessed that 20 years later, i would be on the transplant list... 50 days and counting!

Home for sale

Waiting for transplant is like putting your house on the market. You have a score and you get on a list like the multiple listings. You are in competition for getting offers. You are in the same neighborhood as some, and your square footage smaller than some, and bigger than others. Some have been on the market for a day and they get offers and others just sit there, with no offers. Last week i was getting a little stagnant so we up-ed the "price" or aka my Allocation score. Tomorrow we will start a new marketing strategy with t-shirts, bringing a new vibe to our place on the list. It is just like trying to sell a home, all it takes is that one right offer. I got a nice home with good square footage, a solid foundation, plenty of entertainment and nightlife near by, and a high value of education... Please send me your offers and the score is just right... 40.8, O+, at Stanford hospital. LOCATION, LOCATION, LOCATION!

yuck yuck brain

I am having a yuck yuck brain day... Hope is gone in my brain. I am full of anxieties and yucky thoughts. I am worried the lungs will never come. What if they have to take not so great lungs because they are afraid because there are so few lungs this year? What if the lungs don't work? What if i go through all of this and i don't have a better quality of life? What if i have a lot of complications? I am just in a bad mental space right now. I am freaked if they do come and freaked if they don't. I haven't had this experience much while waiting. Maybe because this means it is coming soon... but what is soon? grrr... I don't like the idea that i am waiting for someone to die. It sounds so horrible. I don't want anyone to die. I don't want to die. BLAH! This transplant thing is getting hard. I know this will pass and i will find hope again, but right now i am just wiggin (for lack of a better word).

Cat Shout Out

Jack and Milton need a shout out . They too are apart of Anna Banana's Bunch. They have been very patient with me. I truly believe they understand what is going on. They understand my O2 tube runs around the house, they simply walk over it, and when I pull it around them they don't mind. I am honestly surprised how well they deal with it. Especially because in the morning when i feed them, i have my tube on one side of them, and when i leave the kitchen to do my nebs, they are eating and while eating just simply lift their paws for me to pull it to the other side. Jack enjoys the time when i am doing my nebs, and he comes to sit with me on the couch a lot of the time. They have never been phased by my loud explosive coughing, and often come up on the bed with us when doing CPT. They like to watch me get beat I guess ;) Jack often likes to play fetch when we are doing a night time treatment and between positions we throw him his mouse or puff ball and he comes back, and patiently waits till the next position for us to throw it. Milton was terrified of my bipap machine at first, and once he realized that i needed it for my lungs (i know he understands this) he was totally ok with it. Many people know how finicky cats can be, and I am so greateful at how understanding and loving my two boys are. They are just a big part of my healing as my medicine, and I am so thankful I have such loving boys in my house.

Cup-pie-cake?

My sister and I had an adventure in the kitchen. It was a day to make cupcakes to celebrate Sara's good friend Dima's birthday. So we decided we didn't want to make just ANY cupcake... we wanted to make something special. So we made these delicious hybrid of cake and pie. They are fantastic. With Chocolate cake as the base they have cherry pie filling inside, and cream cheese frosting on top, with a nice cherry. OH MAN, they were good. It has the best parts of cake and pie, and deliciousness. Here are some wonderful pictures

Waiting for a transplant...

Waiting for a transplant is like waiting for the lottery...
Waiting for a transplant is like fishing...
Waiting for a transplant is like wishing he would just call already!
Waiting for a transplant is like waiting for your college acceptance letter...
Waiting for a transplant is like graduating...
Waiting for a transplant is like waiting for the first day of school...
Waiting for a transplant is like putting off the inevitable...
Waiting for a transplant is like putting all your eggs in one basket.
Waiting for a transplant is exciting
Waiting for a transplant is boring
Waiting for a transplant is hopeful
Waiting for a transplant is miraculous
Waiting for a transplant is scary
Waiting for a transplant is life changing
Waiting for a transplant is the end
Waiting for a transplant is the beginning
Waiting for a transplant is full of love
Waiting for a transplant is a dream about to come true
Waiting for a transplant is trading one disease for another
Waiting for a transplant means I am waiting for someone to die
Waiting for a transplant means i am trying my best not to die right now
Waiting for a transplant means i am going to be given the gift of life
Waiting for a transplant means I am going to experience a life I have only dreamed of
Waiting for a transplant means that My family will get to keep me for longer
Waiting for a transplant means that another family will have to loose their loved one
Waiting for a transplant means a tragedy will be turned miraculous
Waiting for a transplant means I have no control, but still trying
Waiting for a transplant has shown me love more than i could have ever hoped for
Waiting for a transplant has shown me the true color of others
Waiting for a transplant has shown me my true colors
Waiting for a transplant has made my love stronger
Waiting for a transplant has made me touch in with my spiritual self
Waiting for a transplant is full of ups and downs
Waiting for a transplant can't be done alone
Waiting for a transplant means in an instant I won't be waiting anymore!

The Verdict is in

Well, no hospital for me!!! My pfts were stable, and even up 1%. Statistically that is insignificant, so stable is good. Today i woke up feeling normal and not like i was sliding backwards anymore, so we decided to keep an eye on it, but be happy things are still going well. I did meet with my CF/transplant Doc in addition to the CF doc who was supposed to be on. We discussed my O2 needs and with assessment of my 6 minute walk results from the evaluation, they determined it was best for me to be up-ed to 6L all the time, to make sure that I never drop below 88% saturations in my blood. I am able to use my discretion if it is too high, but this is important as I need to have coverage at all times. This change led to a change in my LAS score, and placement on the list. It raised my score to 40.8 and that puts me at the "top" of the O blood type. There is one other who is high like this, but they are a different size than me. So guys... it could really happen... holy crap. It could happen at any time now... it could be soon or it could be in a while. We just have faith that it will happen at the right time and I will get the right donor.

3 months and one weekish

It has been 3 months and a little more than one week since i ended IVs. Remember that I said it felt like things were changing? Well, i think i discovered what it is... My lung timer is going off. Time for IVs again. I started out as tired, and now i am having a harder time coughing, and coughing deeper. I have less drive to get out for a walk (honestly, I haven't done it since last weekend) I know, exercise is the key, but you know what? I can't be perfect all the time. This is the one thing i just don't have the energy for when i start not feeling well, so sue me. I am a little nervous about how this whole hospital and waiting list thing work together. I have a clinic appointment on Wed, when I will do my pfts to see where my lungs are at and assess the situation to see what i need to do, and get the docs approval for hospital time. I am not looking forward to it, because i have been informed that things are different now and protocols have changed about desensitization. They supposedly will put me on a different ward for the time when i get used to the drugs... GREAT. But it will be fine, i think it is just across the hall, and there is nurse cross over, so that should be fine. Just wanted to give everyone a heads up. Bummer, but it is part of the drill. I am just excited that I should be moving closer and closer to my new lungs.

I will give a full update when i know what his actually going to happen...

September already?

I can't believe it is September already! There is definitely a shift in the air. My mom and I are definitely feeling it. There is something about what we are doing that is getting a little old. We need to mix things up a bit. Today we are going to the Stanford Hospital Lung Transplant support group with my dad. That should be interesting and exciting to meet others actually waiting for lungs. I have a couple friends who go already who have received transplants and i look forward to visiting with them, as well as meeting some new people. After we are going to dinner with the fam. Should be a good time as always. Since i completed the shirt orders, i am just waiting for them to arrive and get started on the shipping process, that is going to be an undertaking, but i look forward to it, as it will be something fun to do. I am also going to be making some prayer flags to include in the installation at the Ronald Mcdonald house at Stanford. The Dalai lama is coming to visit in October, and they are creating a prayer flag project, which was originally designed and implemented by my glorious mother :) We are hoping that we will be able to attend this event... fingers crossed... we will see. Well, that is about it for now. I think this is day 39 on the list...

Amendment
This is life with crappy lungs... I felt too tired after treatments and shower today, and we didn't end up going to the lung transplant support group. I am sad that I didn't go, but honestly, I was just feeling so wiped out, and i looked so exhausted when i looked at myself, i just couldn't handle it. I have a hard time remembering sometimes that i am waiting for lungs, and that means i can't do all the things that i used to. I can't go go go. I need to stop and rest. It is very weird when the body just says no. For me the experience is a heaviness in my upper shoulders, my head is heavy and my eyes look a bit red. My ezcema starts to flare up a bit on my eyes, which doesn't help the matter. I also feel a general sense of heaviness all over my body. And it feels like the motor just won't turn over. I know it isn't a lung exacerbation at this point because with some rest I feel better, and my blood sugars and still good, and my mucus is not too gross or too much or too little. So i just ran out of energy. When i decided that resting was in order, i plopped on the couch and didn't get up for some hours, 3-4 to be precise. My mom and i uploaded Serendipity on the bluray player with insta-netflix, and watched that. I napped, the O2 guy came, my mom brought me a snack, and i got most of my energy back. My dad called and we said, yes, still come and go to dinner with us. So we did. I was able to gather my strength to get an excellent meal with my wonderful family at dishdash. We don't get to be together very often, and it is nice to cherish the moments we do have. Now i am just about finished with all my nebs, and i am going to finish the night off with some peach cobbler and ice cream (with insulin) and go to bed, only to wake up at 8am to get to Emily's bridal shower at noon. This is why it is difficult for me, who has to get up so early to make a noon get together? ME. I can't wait for that part to be over... come on lungs... any day now....