A Banana Bunch Miracle!

Well, today I placed the orders for the shirts. I know, I know, a day late... but I was so exhausted yesterday from getting everything organized that I just decided since I am the one who set the deadline, I don't need to pressure myself. So I did it today. The grand total of orders from my Banana bunchers was 126. I can't believe it! SO MANY SHIRTS. So I placed the orders, one for short sleeve and one for long. I realized after i sent the orders that I had a little anal Anna moment and wanted to make sure everything was copacetic. So I called the Tshirt company, and spoke to my new best friend Jim. He noticed the 2 orders placed were the same and said, "Anna, I can save you some money since you happened to call" OH BOY! There isn't much more that I love than saving money. He combined the orders and I got a discount price for each type of shirt at the 126 item price, and POW! I saved 201 bucks! Now Iwill be able to donate a very significant amount. Once all the shirts arrive, and the shipping costs deducted from the total, I will let you all know how much is donated, and I will do it in the name of the Anna Banana's Bunch Supporters, YOU! Thank you for making this little endeavor such a success! That was my first Banana Bunch miracle...

The SECOND crazy thing that happened today... 5 weeks ago today, my friend Emily put a bracelet on my wrist with the intention of new beginnings, and dreams come true. My directions were to wear this bracelet until it fell off, then my dreams would come true! Well, today 5 weeks ago and almost to the minute or the same time it was put on, it fell off. I was strugging with a CD and trying to make it work in our DVD player, all these new fangled contraptions just boggle my mind sometimes... but I got up to go try another CD player and plop. The bracelet fell right on the CD. "OH MY GOD. IT FELL OFF" AHHHHHHH..... My mom turned around, "STOP. We have to take a picture."


So this is our action shot. Don't you feel like you were there too? hehehe.... So who knows... maybe I will get "the call today", maybe I won't. But I do know one wish sure has come true. I have been shown a tremendous outpouring of care, compassion, and support. I never expected to have so many people from all facets of my life so interested in supporting my "cause" and just how many people want to be apart of the bunch. I thank you all so much, and it will give me the strength I need to carry on and get through this really tough and exciting and scary time. To me, you are all truly a Banana Bunch miracle, and a dream come true.

One Month

Well, today is August 27, so i guess that means that today is officially one month on the T-list. Wow. I don't want to minimize the magnitude of my situation, as I am facing the biggest day of my life, but each day is just like every other day. I would have thought that living on the list was different than this. But honestly, it is easier than I ever anticipated. I have had my moments, but honestly, I just trust and have faith that the right lungs will infact come at the right time.
I am getting more and more ready for them. I have been working on opening my heart and my energy, to accept this amazing gift I am waiting for. I have been trying to connect energetically to my future donor. I hope they are living their life to the fullest and enjoying the time they are spending with their family.

The one thing that is difficult is knowing that the list continues to grow because there have been very very few lung transplants this year. I am really hoping there are some more transplants that happen soon. I am really hoping that the other people who need their lungs most get them soon. I am healthy and stable now, but it won't last forever. I used to think that my transplant was going to happen fast, but I do not have that feeling anymore. I have settled in and I realize this is partly because I am not completely emotionally ready. But I do hope it happens this year....

I just hope that my donor lives their life to the fullest with the time they have, and i continue to get ready for the biggest day in my life.

Order your shirts!

Just a reminder that Orders for Anna Banana's Bunch shirts are due BEFORE MON AUG 30!!!

Please place your order SOON! I want everyone who wants to be included to have the opportunity. Please email me: A13@aol.com with your order

Name
Address
Long/Short sleeve
Size

and please pay through "send money" on Paypal to A13@aol.com

Please email me with questions. You can refer to the first post for more info about the shirts...

Thank you all who already ordered!!!

Can't wait to get the rest of your orders...

How are you doing?

I just wanted to write about how i am doing. Well, everything is relative, but I would assess my situation as GOOD right now. This is the longest I have stayed out of the hospital in a couple years. I am going on my 4th month of Inhaled antibiotics between hospitalizations. I am not even feeling like I am wearing down. I can feel some congestion in the Left side that comes up when we bang and beat on it, so that is good. I was able to walk around the park today twice, which combined with walking there and back home is about 0.8 of a mile. So that is good. I am keeping up, not slipping. I say this with my fingers crossed because we all know how fast things can change. My GOAL is to stay out of the hospital till i get my new lungs, but i won't drive myself into the ground for that, It is just a fun goal to set to see if they come soon enough!

Other than that MENTALLY i am doing well also. I have my ups and downs, times when i think about the what ifs, but I try to stay focused on the positive and visualize the things that I want to happen when i can breathe deep. The waiting sometimes gets to me, but I know there are so many others on the list that have been there so much longer and deserve their calls before i get mine (even tho that is not how it works anymore) but I still feel that it should be a somewhat first come first serve.

I have been enjoying my kitty cats. Jack spends a lot of time following me around these days, and sits with me while i do my nebs, like right now... purrrrr purrrrr. He doesn't sit ON my lap, but he sits on the soft blanket right next to me. SO CUTE.

My Mom is finally getting better. she even tried marching yesterday ;) So i think we will be walking more this week, good for both of us :)

So things are GOOD. Just trying to continue working my butt off to keep it up :)

Anna Banana's Bunch Shirts are HERE!

Make custom t-shirts at CustomInk.com

Make custom t-shirts at CustomInk.com

Well, we finally did it. We designed the shirts and they are available to order!

So here is the process...

I will place a bulk order Please EMAIL ME at A13@aol.com with your order.
In your email Please include:

Full Name
Address
Number of shirts (Long sleeve or Short Sleeve)
Sizes. (Long sleeve: S,M,L,XL,XXL) (Short Sleeve: YS,YM,YL,S,M,L,XL,XXL,XXXL)

There will be one set price of $25 that will cover both types of shirts as well as postage. I ask for you to please pay me through PayPal at A13@aol.com. To guarantee your order I ask for your payment to be received before the order is placed on AUGUST 30th. If you do not want to use paypal you can mail me a check but it must be in my hands before I place the order. Please let me know with your order that this is the best means for you and I will give you my address.
I do ask for the people who are local that they can pick up their shirts. Due to the size of the order the overall cost may vary, therefore if it turns out there are extra funds at the end, I will donate them to the United Network for Organ Sharing.

Directions for Paypal: Go to website HERE
The link should take you here...
Send money Tab
Send to a13@aol.com
Select the Personal Tab for type of payment, Click on money being sent as "payment owed"
From your paypal account, if you have a balance or your bank account is connected there is no fee. If you use your CREDIT CARD, a ONE DOLLAR fee with be charged. If you choose to pay with a credit card, please click on the option for YOU to cover the fee.
Follow the rest of the directions and the transaction will be complete.

I hope you guys enjoy the shirts!

I can't wait to get your orders...

Mission Anna Banana's Bunch shirts commences: August 30, 2010!

A poolside life

I have been lucky to have an easy week this week. My mom and I had to get out of the house on wed morning and we participated in our new summer ritual. Breakfast at Dinah's! It is a restaurant that sits poolside, and it reminds you of a time traveling to a 50s vacation. It is fantastic. It is our escape during this rough time in our lives. A little mini vacation every two weeks. Even though this summer has been on the colder side, it has always been nice when we go to Dinah's! This week Peggy met us there and gave us some more entertainment. She is a great friend and support.

I also finished painting my sister's birthday present. A picture of her kitty mooey! I think it turned out quite nicely if you ask me...Here is a pic of the photograph of Mooey and also my watercolor of her...

3 weeks

Today marks 3 weeks since i have been listed for a double lung transplant. Today is a harder day emotionally for me. I woke up out of a dream where the surgeons were calling me at my old number that I had in high school. In this dream the cops came searching for me trying to locate me. When I finally spoke with the surgeon on the phone (in the dream) he said they found lungs, and needed to know if i accepted them. When I asked him about the lungs he said they were "mediocre". I said "MEDIOCRE?" and i proceeded to tell him how i deserve so much better than that, and i asked the risk of not taking them, and he said, well, another pair may not come. He asked me again "will you accept these lungs?" and then i woke up. It was a horribly uncomfortable dream.
It brought all of my neurotic tendencies to the fore front. Today I called my sister to check to see if the phone numbers were still correct on the list, and i got an anxious feeling about how the new lungs can't come soon enough. I can't complain because I have not been on the list that long, and I have the health right now to be able to sustain, but the urgency of the "what if" really hit me today. It also hit me at the reality that i am truly in this position. So here I am, waiting for my new life to start. I have no control, I have no way to make it come faster. All I can do is wait... try to enjoy my life as it is and WAIT....

Anna Banana's Bunch

Hello to all my readers (and I hope that you mean you are supporters). At retreat this year Linda, me and my sister were thinking it might be fun if we had T-shirts to commemorate this momentous transplant event. My sister and i have been working on designs and I think they are almost ready. We would love to know if anyone out there is interested in purchasing one for themselves to wear along with us. I believe the cost will be approximately $26. But the more shirts we order the more the cost goes down. If you would like to partake in the shirt adventure would you email me to let me know?
A13@aol.com

Obviously you will want to see the shirt before we order, but since it is not finalized yet, I just wanted to see if you would be interested or if this is a totally ridiculous thing. The basics is that the shirt will be dark brown and short sleeved. My mom really wants a long sleeve one, so if you would like to jump on that band wagon if there are enough orders we can do both long and short sleeve. It will have a icon of bananas on it, say "anna banana's bunch" and a slogan.
Sorry it is so brief of a description, but i will unveil it when it is finalized....

So please let me know... if you would like. Thanks!!!!

Update

The transplant last night didn't end up happening. It turned out that the potential donor was not in good shape at further examination. They were told that the White blood count was high, which is a sign of infection (not good to put in a newly immune suppressed body) and also the lungs were not able to saturate the blood with enough oxygen. Upon that discovery they determined that the lungs would be too risky to donate to my friend Rhiannon. Therefore they canceled the procedure. However, Rhi did say that they believe that the other organs may have been salvageable... Please keep this person in your thoughts and their family is going through a very difficult tragedy.

Thank you.

I also wanted to let all of my readers know about this event because this could be a possibility for me as well. In the transplant world we call this event a "dry run". So it may very well be that I get the call for transplant and have to go home as well. My doctor told me that this occurs about 10% of the time but I have heard that it is not uncommon. Some people have a few of them. So i wanted to take this time to educate and not have you all freak out if it happens to me....

Evesdropping, blockages, and transplants

Today was quite a full day. I unfortunately woke up to a hurting, gassy, protruding belly. I recall this pain, and pressure... BLOCKAGE!!!! OH NO. I immediately got up to take miralax on the double, and then proceeded to throw it right up! Granted my coughing probably was to blame for that one. So I just did my treatment and had my mom call the hospital for me to let them know and see what they thought. so i was instructed to walk, drink the lax, and hydrate and see how things go. Well, once the treatment was done, i kept it down, THANK GOD, and a couple hours later it was doing its magic. so it looks like we will thankfully avoid the hospital this time!

In the middle of the day, the stirring upstairs started... uh, oh... is HE BACK? So i proceeded to "water" the plants. I realized it wasn't the neighbor. It turned out to be his Sister in law and the brother, they were trying to fix the door, and secure the house, as he is not coming back for a long while.... YAY! We got to talking and traded crazy neighbor and crazy lady stories. So they are totally normal and not at all like their brother. They even apologized that we have to live with him... haha.. that is an understatement.

Finally I am very happy to report that my friend Rhiannon is getting her double lung transplant tonight (well, tomorrow early am). she got the call today. YAY! Please keep her in your thoughts as well as her donor and their family... I surround them all with light and love!

Go get em RHI!!!!!

Power of Two ? or that of many....

Yesterday my mom and I completed our participation with the power of two documentary. We spent the day infront of the camera. I am not going to lie, it was really hard for me to not look like an idiot. I stumble, i was trying hard not to make jokes, and lighten the mood. I felt pressure to "do it right". I wanted to provide them with some good footage for their use, I was concerned that I would waste their time if it wasn't good. I realized how much pressure i put on myself. This was exhausting. We did interviews consisting of me by myself, my mom by herself, and my mom and i together.
The second part of the shooting was at my condo. The four of us, Ana, Isa, me, and my mom sat together on my couch and had a love fest. I was so thankful for this experience. It was the first time the 4 of us have sat down together since i got listed. Also, the first time in a long time that it was just the 4 of us. We got to tell each other how much we love and admire each other. I must say, it was so nice to be there with all these powerful women who i love so much. It really nurtured my soul. It was a bit exhausting of a day and it took until now to have the energy to write about it, but I am so glad i did it. This was the last of the filming, today was their last shoot and the filming is complete. However, Marc the director made it clear that if I get the call soon, they will be there in a moments notice if i want to share my experience with the camera... so we will see... is it in the cards? Will my life magically coincide with this awesome film and turn out to be a narrative for the patients in waiting? Who knows... I will let that one be decided by the universe.

Flipin it

Today (after the sleep clinic) i did a bunch of flip videos. Our dear friends Ana and Isa are in the process of creating a documentary film about international issues, cystic fibrosis, and transplantation. My mom and I have been asked to contribute some tape of us talking about our experience with transplant and CF. It is very hard to talk to the camera. I always said how I would never do reality TV, but i guess this is different. This isn't reality TV, this is truly reality. I talked about how difficult my life is, what i do in a day, what it means to be on the transplant list, and how important my sister is to me. Along with some other random ramblings...

I am having this karmic experience where i am going through the transplant process right at the time when a documentary is being made, and letting go of my own insecurities for the betterment of others is what i have to do. I have to let myself be vulnerable. I have to let myself be seen as "sick". this has always been such a big fear of mine. I never want people to view me as sick, as unable to accomplish something, as less than. But here i am. Barely able to keep up. I must be honest at this point, life is hard. I am the epitome of vulnerable. I must share it, and help others learn about it. To see why we need organ donors. Because without the knowledge and education we don't have donors, and we need people to consider the possibility of donation. If i can share my story and it will help others, it makes my participation and insecurities worth it.

A day at the sleep clinic

Today two gimps set out on a date. One with a crutch and the other with an oxygen tank and sleeping machine attached to a cart. clip clop, wobble, wobble, wugga wugga, woooosh. The sounds of the invalids.

We got to the appointment just fine, hobbled and rolled our way up to the sleep center. The doc greeted us after we checked in and we said, "don't mind us, we are both gimps" and he said, it's ok, i am too! He mentioned he had been in some crazy explosion accident, he didn't go into it but said he was lucky to be alive. Anyways, he was a really great doctor and really understanding to all of my variety of issues in addition to my sleep apnea. He downloaded my data from my SD card in my bipap machine. He said that everything looked perfect! I was leaking less air than was allowed by regular use, and that I had no apneas or hypopneas at all. They want the index to be no more than 5.0 and my index score was 0.3. He called me a miracle child! haha! I finally had a good appointment, and the treatment is working! He told me to just keep doing what i am doing and that after transplant i will come back to do another sleep study to see if i can switch to the Cpap, and not use O2 with the machine. YAY. One thing i don't have to worry about anymore!!! Hallelujah.

Happy Birthday Casey!

Today is the love of my life's birthday! He is 28 today. We celebrated with a nice man sized brunch. I made him hot linguisa, 3 fried eggs, some cheese, honey dew melon, donuts, and beer. What more could he ask for? We watched So you think you can dance... that we missed last week from being at Retreat. It was a really nice day. He has been getting calls from his friends and family all day. I think he is feelin the love. He should. He is the most amazing man. He has been so supportive in this time of need in our life. We are working together and still having fun. I love him so much and am so thankful to have him in my life. Next year we will be able to party a bit harder and maybe go on a birthday adventure with great new lungs! Thank you Casey for being You and Thank you for being Born. I love you with all my heart!

My Wonderful Week at CF Retreat!

Ahhhh.... the week I anticipate all year is over. I am overwhelmed by a sense of camaraderie, exhaustion, joy, hope, and a great will to live. My life has been blessed to get to know so many amazing people with CF, and also "normies". This year our group was lucky enough to welcome about 10 new comers. We had 5 new CFers, all MEN! For the first time the females were outnumbered! We had so many people with CF this year. Often we are about even with how many non-CFers we have, who we need to help with our cross-infection guidelines and strategies to keep us all safe and germ free. But this year Monica and Jessica worked their buns off as there really were not as many as we have had in the past. Not everyone was there for the entire week, but we had great attendance this year. It gave me a lot of hope that this group will continue for years to come! The other amazing thing about our group was at one point we had 9 people with transplants... next year I will make it 10!!!!!

It was a strange experience for me to meet all these new people at this stage in my life, as i am not quite as spunky or energetic than i once was. I drag around Oxygen, and i cough a lot more and spend more time doing treatments. However, I am proud that I participated, had a good attitude, and enjoyed myself. It was so nice to escape the mundane-ness of my life on the list. It was the only safe place i could go to spend a nice week long vacation.

We had great rap sessions, arts and crafts, stress management, yoga, volleyball, wiffle ball, improv, and a wonderful one man show. We were honored to welcome Jordan Herskowitz to perform his one man show Jordy Pordy, which he performs to raise awareness for organ donation and cystic fibrosis. It was absolutely an amazing show. It was very close to my heart and my sister's heart as we are struggling through the same experiences that he has been through in his life. Lets just say there wasn't a dry eye in the audience by the end, and Sara and I made a ridiculous scene of the real authentic Ugly Cry. It was good for us to process and experience this together. We were both thankful that during the show we did not end up sitting next to each other because we would have been a blubbering mess!!! His show was not just touching, but also hilarious. He really combined the comedy and drama perfectly.

For some of the activities I had to sit out, to rest and nap and treatment instead. But i felt completely included and loved and that I made a great contribution to the community. I just wanted to make sure that everyone knows how important each person at retreat is to me. They all teach me lessons about life, and to be happy to be alive, and give me the will to get to next year!

Miss Priss

Well, I am the princess from the princess and the pea. I can't sleep anywhere except for home. I thought that maybe this year would be different as I finally got my sleep apnea treated, but no way jose. I think it is even worse this year. I had the least restful sleep of my life. If this doesn't change tomorrow, i might have to head home to sleep. I just CAN'T run myself ragged. Maybe if i get tired enough then i will be able to sleep. Hopefully a nap? I think part of the problem is that the only way i get to bed is through a ritual, and there is no going to the kitchen, having a snack, watching tv, then heading to bed. It is amazing how addicted I am to routine.

Also, every time i sleep away from home i curse the day we got a tempurpedic bed. I can't sleep on regular beds now. They squeak, my blood circulation gets cut off in my arm, and i just toss and turn. Obviously it is good that we have this amazing bed at home and i sleep wonderfully on it, but honestly I am ruined! Oh poor baby, I know. I just can't help it. I have tried so hard not to be a prissy sissy, but it just doesn't work, i continue to be high maintenance.

It is funny being in this room because it is the most BARE room, no luxuries what so ever -- not even blankets. And you have to make your own bed, luckily i had one of my slaves do that for me ;) hehe... We do have wifi. I don't even have enough space to put all my medical crap. We need an extra table. I am definitely the village pharmacy over here. I think i am going to TRY to get a little more sleep now. My eyes are getting tired looking at the screen. I gotta get in a better routine here so i can get some rest. Part of the problem is that it is too much fun here and there is always something fun to do... who wants to sleep when your best friends are around? I sure don't ;)

One WEEK and time for Retreat!

I got on the transplant list One week today. It took until now for it to really settle in and for me to realize, Ok, i can do this waiting thing. I am really ready to buckle down and ride the ride. I don't have to be on HIGH alert. I just have to make sure that I am available at all times by phone. I guess my lungs are always on call ;) Other than that I need to just simply relax, live my life, and let the mojo flow.

And therefore I am going to live my life with the most amazing people... My CF buddies!

Off to the CFRI teen and adult Retreat today!!!! YAY!!!!! Except it is bitter sweet because two of my good friends are not able to be there this year because of their sputum culture results. We screen everyone to make sure no one has any type of bug in their lung that is shown to be "more serious" So because one of those bugs showed up in two of my friends cultures, they can't join us this year. I am giving them a shout out right here... HEYYYYY! I love you!

I am not sure how I am going to survive this retreat energy wise, but i have a great support network, and my wonderful Linda has offered to help me in any way she can. Also, there is always my wonderful Casey. So they will be my slaves ;) My mom gets to be my slave one more day this week, then she gets some time off from being a slave. I am a nice slave driver though, i let them eat yummy food and take naps, and even exercise if they want. So don't feel too bad for my slaves ;) Also, spending time with ME has got to be fun right? hehe...

I am due for a battery recharge with my friends. I hope this week completely fills my CF love tank!

My weekend

I spent some time by myself this weekend. As much as I love all of my wonderful caregivers it is nice to have personal moments. I was able to nap, paint, go for a walk, and lay by the pool. I was inspired to paint a picture of my new lungs... I think of it like a vision board... Paint what you want to happen. Let it be so...