False Hope??

I read a friends blog and she brought up an interesting and possibly controversial point with the CF community. You can read her blog on this by clicking HERE.  Will there ever actual be a "CURE FOUND"? I used to believe that I would live to reap the benefits of a cure. I participated in years and years of fund raising and drug trials.  My first instinctive response is one that is quite cynical and "real".  I have lived through facing the failure of the CURE not being there when I needed  it. I got to the end and I looked over the edge and the "cure" was not there to keep me from falling. However, deep down that's not how I really feel. It's true that as we live longer and life beats us up a little we begin to see things for what they really are. But despite that, I never gave up on HOPE.

I always had hope for a cure which motivated me to do what I could to stay healthy and active so "when the cure was found" I would still benefit from it. . . . I also lived for the idea that 'I could beat CF'. I believed with my whole being, that I could somehow exercise and treatment my CF from ever stopping me or slowing me down.  Now of course, I see CF for the monster it becomes despite my best efforts. BUT I lived my life and made choices based on having hope and optimism. I honestly believed I could conquer anything including CF. I wouldn't have made it as far in life if I hadn't believed I had control over my fate. If anyone asks me if I think there will be a cure someday, I would say "I hope so" that is an honest answer. I still hope that someday children and adults with CF will not have to get lung transplants. I am thankful that lung transplants are an option. As of right now,  CF will eventually wear down the lungs and there is no "miracle Cure Found" (yet), but at least there is the option of new lungs. When I knew that Cystic Fibrosis had finally caught up to me after 27 years of trying to beat it, I turned to having HOPE for a lung transplant. Hope/Faith in something always makes us become better than we could ever be without it. I like the idea of having hope of new treatments that add more tomorrows. Making life with CF easier and extending quality of life.

As much as I feel like CF is a losing battle. . . . I never allowed myself to really believe that. Living through a transplant makes me see life and CF in a different light. Not right or wrong mostly just different. If hoping for a cure or believing that running marathons and working out will keep CF from killing you and that is what motivates a patient to do their treatments, take their meds and stay very active, then I say to never lose hope in those things! Maybe my optimism is not as 'glittered coated' as it used to be. . .but it's still here & keeps me going!

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New Cut!

So my Mohawk was getting a little 'outgrown' and since I started my internship I figured a little more "normal" or professional look would be good. I am seriously FLAT broke right now so I got the courage to cut my own hair (again). . I am getting pretty good at this :) I am dying to color it bright pink, but perhaps I might have to compromise with just a pink stripe or something!
Check it Out! I really think I would do well at Beauty School. . .but why go to beauty school when I can go to college and get a degree 100% paid for!? Anyways here is my new look :)

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Saying it out loud

I honestly see myself through a whole different perspective sometimes. I consider my life right now fairly "normal" my daily routines are similiar to a day in anyone else's life other than I take a handful of meds 2-3 times a day. But recently I have had to explain my 'limitations' to a Vocational Rehab worker.  I thought it would be easy for me to explain my 'life post transplant' and as we talked about it outloud it just hit me. . . I have a lot of issues still.

For example: I can easily say "well I just take my immune suppressants", but I also had to list all of the following, prednisone, Bactrim, blood pressure pills, blood thinner pills, crazy vitamin doses, and pancrease suppliment pills (whenever I eat something). . .that is a lot to take. On top of that I had to address things like constant back pain, frequent headaches, terrible insomnia and difficulty remembering things. Okay, those things are all easily remedied BUT  I had to really think of my day to day obstacles I then added: Borderline Diabetes (although I think I have the diagnosis, I just control my sugar levels without insulin), I have Anxiety, probably a bit of depression once in a while and who can forget the lovely tremors that Prograf causes! As I listed all of that and said it all out loud it shook me up a little. The most important issue we addressed of course was risk of infection and/or rejection. I feel like I am the healthiest person in the world, but on paper I look very sick :) Oh and on some of my paper work from the transplant center apparently I am also coded as having Liver or Kidney disease stage I or something like that. . . .really?

In reality I do feel like I have had an extraordinarily healthy 3 years post transplant. What very few complications I have had since my release after recovery is nothing short of a miracle.  I am not cured obviously by reading the long list of things in the above paragraph, but as far as I can tell it was one heck of an awesome trade off. Many of the day to day bothers like the headaches, tremors, frostbite fingers & toes, anxiety, depression, back pain, kidney functions, high blood pressure and even the high blood sugars are all probably just side effects of my list of medications . . . but I will take all of those over coughing up mucus & blood, being under weight, having no energy, suffocating to death, having to lug around oxygen everywhere I go, spending 1/2  of my life in a hospital room, but most of all having the fear of falling asleep cuz I was afraid I wouldn't wake up.

Getting a lung transplant was a trade off. One set of problems for a different set of problems and even though when I list all the little things I deal with now, it is a trade I would do over again in a heart beat. 

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Pug Sitting!

Today I was pug sitting. Bella played with Teddy for most of the afternoon. . .but now I think the jealousy is setting in a little. Teddy is a cute little guy! He has been keeping an eye on the door, I think he's missing his mommy :) It's been a fun day to have two snugly puglies. They both should sleep good tonight! Teddy is sleeping on Bryan's lap and Bella is snuggled up to me.  Oh how I love PUGS!!

Out of all the toys they both wanted this rabbit!

Teddy & Bella

Teddy Chillin out on my couch!

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INTERNSHIP

Yep. . . I definitely spoke too soon! I got a call from Chris Freihofer the casting director and he invited me to join the team :)  I am really excited to learn and be a part of The Actor Factory.  It is an internship position so it's not a "job" and it's No Pay, but I am sure I will enjoy being there, learn some pretty cool things and meet some pretty cool people. I knew I nailed the interview (haha, I just felt good about it). I will be going in on Thursday to get things rolling and sign some paper work. I am sure I will post all about my new adventures there! You can check out The Actor Factory by clicking HERE.

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It's Mii Time

My Wii showed up on Friday! I am actually pretty proud of myself for getting it all set up and "synced" on my own. I have already created a Mii for myself and tonight I did some YOGA. It gave me my "fitness" age which I am proud to say it came back as 30! It keeps telling me "You have great posture" oh yeah!!! The balancing stuff is kinda hard and when I hold the motion sensor controller it wiggles all over (prograf tremors). We rented some other games to really get a feel for how the wii works. We rented Mario Worlds and Bryan rented Star Wars 'Forced Unleashed II'. . .I ended up playing the star wars game ALL DAY yesterday. I kicked some dark side butt!

I am hoping I am at the tail end of this little cold I have had for the last few days. My micro spirometer hasn't dropped and I'm not running a fever at all. . so probably just a cold, it is going around here. Otherwise I am feeling good. Staying positive and I officially have a Wii to answer to. It even made me commit to to a 'Fitness' goal. I had to laugh when my fitness goal had to be to gain 12 lbs to be in my "ideal" BMI. I am at a normal BMI but it wants me to be ideal. NO gaining fat though, I will have to gain it all in muscle :)

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Drugs, Copays & Being Alive

Awwwww, medicare how we seem to have such a love/hate relationship now for so many years. Medicare, you cause me a lot stress. However, I owe my life to you in some ways. You are difficult to understand, but you usually come through for me. I complain because your policies are confusing and unreliable, but I am still alive because you cover 'just enough' to keep my health under control.

I have been losing sleep, stressed to the MAX, had a few breakdown 'episodes' and have even pondered the thought of "Am I worth all this". I have medicare part A & B. My part B plan will cover my prograf with a 20% copay which ends up being roughly $220 a month. I wouldn't have to worry about the "donut hole" as it does not apply to part B coverage. I also pay extra and I have a Part D plan (prescription costs) Under my current D plan Prograf is a covered formulary drug with a copay of around $7.50 HOWEVER, they denied paying for my prograf due to the fact they could pass the buck to my part B. I just feel like I am on a sinking boat sometimes. A slowly sinking boat. My premiums for my coverages comes to $120 month. . .so now my out of pocket expenses are already at $340.00 I take a lot of other meds than just prograf! I am not sure what those copays will be this year, but hopefully most of my generics will be cheap. It's hard not to feel like my drug cost puts a hardship on Bryan and I. . . .I feel guilty sometimes. I get $889 from medicare subtract the $340 and I end up with only $548, it's just hard to feel like I contribute enough.

Life after transplant has many wonderful things that I get to do. . . unfortunately it also has some pretty stressful and unfair things too. I wish we had more money, I wish I didn't have to deal with insurance, but don't we all? I AM blessed so much to be so healthy and alive & to have the fight to call HUMANA and Medicare and give them a fight. I for one DO BELIEVE that changes in Medicare/Healthcare need to be addressed. Things like what I am dealing with is just a crack in the system. There is no "RULE" so HUMANA can or can't choose to cover it, and ME the patient who has the prescription coverage pays the price for it.

I have even looked into the drug companies "extra help" plans to make sure the patient gets the medication they need. . . .however, patients on Medicare or Medicaid don't qualify for the help. I just wonder sometimes if I am worth all this. Bryan tells me every day I am. I guess to him I am worth it and he is who matters.


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Spoke too soon

I spoke a little too soon. I figured the Casting Agency wasn't interested in interviewing me for the internship but they sent me an email today asking me to come in tomorrow to interview. I really need something to help me with all the time I have on my hands. . .even if it's no pay :) I will post how it goes. I can always use the experience.

Also, I met with Vocational Rehab today and sounds like they will help pay for my schooling, but it will be at the University. They want to train me for a job that is going to be solid and be accommodating to my health restrictions. So now I have the task of choosing what I want to go to school for, something 'sustaining'. I will probably have to major in something and minor in Arts/Theater. Got to be balanced with 'practical' and 'what I am interested in'. :) I might start this summer with some online classes either that or I'll start in the fall.  It will be years before I am done with school, so actually "working" is a little ways into the future.

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Getting Settled

We have been in Oklahoma a little over a month. . .doesn't really feel like it's been that long. I am happy to have already made a friend! It took me over a year to make my friend in Phoenix. I mean I had friends, but ya know the 'friend' you can hang out with and spend time with. We have a lot in common and I think we'll spend quite a bit of time together :)

Bryan likes his job and he gets along good with the other guys at the shop (I knew he would). Bryan is an easy guy to like and get along with. We have spent the last couple nights hanging out with one of the guys from work and his wife. It is nice to have them to do thing with. So all good things!

I meet with the vocational rehab worker tomorrow. . .not sure what that is going to be like, but I should get an idea if and how much they'll help me with school. I am kinda leaning towards going to the University because apparently we get automatic 'resident' status here. So no out of state tuition!! But like I said before I will make that decision when I have to & right now I am still unsure.

Also, if you remember about a month ago my friend Susanne got her new lungs in Pittsburgh. She is doing great with the lungs, but last week she fell due to the weakness of her body from the surgery (it's common to lose muscle strength after surgery). She apparently broke her leg/knee and has been admitted back into the hospital where she is under supervision and physical therapy. Please keep her in your prayers that she will recover and that she can stay positive. I can only imagine how frustrating a set back like that could be. Thanks!

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Coming Soon. . .

This is just a heads up on what new cool project I am working on! I have never been too thrilled about wearing rubber bracelets around, not that they aren't cool. . .just not my thing. I am going to be working on some bracelets that will be SUPER durable and I can make them in Purple for CF and Green for Transplants. I am hoping to have them available in the next couple of weeks! I will try to post variations of colors I will have available. These will be all hand made by me. I am still trying some ideas for personalizing them.

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Just called to say. . . .

Tonight I got a much needed phone call from one of my most precious and favorite person in this world. I answered the phone not taking much notice to who the call was from. My heart lit up when the smallest cutest voice with so much excitement and conviction spoke.
    "Hi Jamie!! I was watching Despicable Me and I was missing you so we are going to come see you tomorrow before I go to kindergarten. I miss you a lot. Hey, guess what? Despicable me says 'OH YEAH' and blows up it was really funny' I love you."

There is nothing more precious than having someone so sweet and innocent love you so much they think to call you and tell you the moment they had that thought. My niece is very special to me and I do really miss her. I hate that I am away and when I get to come home, she has grown up so much and I have had to miss some of it. A child's love and admiration is more powerful than about any other force on earth. . .that's why Jesus loves the children so much because when you are loved by a child, it is the purest form of love and it's miraculous.

I don't have children and I don't know if we ever will. My sister's kids have a special connection and place in my heart. Tonight MJ made sure I knew I was loved by her and missed. How can that not brighten anyone's day! Love you too MJ and miss you every day!!! It's for moments like these that I fought for my transplant.

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Apparently no internship. . .

Which I am surprisingly okay with not hearing back from the casting agency's internship opportunity. For several reasons actually. . .I don't enjoy working for free, who does? But I felt like I left that in God's hands and I am satisfied that at least I applied for it. There will many other offers for me to do things as I explore what Norman, Oklahoma and 2011. I DO know that I DON'T know exactly what I am going to do and it kinda feels good to not have the stress of feeling like I need to make any decisions right now! whoohoo~

Okay. . .I heard back from my blood work. Some good news, some not so good. My Vitamin D levels has doubled (good news), but my Cholesterol was high (bad news). My creatine/kidneys was 1.2 (good news) but my Prograf was 5.6 (bad news).  I had some girl from the office call me with my med levels. . . .I had to contain myself when she started lecturing me on "You really need to try to take your prograf every 12 hrs split up evenly. . .blah. . blah. . blah". . .I tuned her out after that. REALLY?!! look lady, I am 3 yrs post transplant I have very, very few complications in those 3 years one of them being NO REJECTION. I cannot tell you how it drives me nuts when I am spoken to like a small child about how to care for my health. I have alarms set on my phone that go off at EXACTLY 9:45 am and then again at 9:45pm. I stop what I am doing and I take my meds at those exact times every day for the last 3 years!!!!! Without a nurse babysitting me. So please give me some credit lady!  *Big Breathe* 

Okay, so a little rant. . .but lab work looks okay. my prograf dose is going from 3.5mg am to 4mg am and at night from 4mg to 4.5mg. SO she increased my prograf by one mg. We'll see if that works. Apparently my target prograf trough is 8-10.  I wish Leslie would call in my labs cuz I just think she knows where I usually am at and so is better at gauging levels. (however, she seems to be the hardest person to talk to) she is very busy with many patients. :)

That's about the most excitement I have had today :)

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Won a Wii

I WON THE Wii FIT!! I seriously don't usually win these kinds of things but I did!! So thank you to all my friends and family for helping me win this & thank you to Cystic Life! If you didn't get a chance to become a member of what I consider to be one of the most awesome online communities for Cystics, family members and friends of Cystics then go do it now.  I will be sure to post some pictures of how super psyched I am when it arrives & pictures of me toning up with the Fit Plus.  I got my workout done tonight from dancing around my apartment in excitement and disbelief!!! Whoohoo!!!!

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Brutally Honest

So I toured one of the cosmetology schools that I was really leaning on going to. They offered the chance for met to sit through a class one day to see what the school is like. I am SOOOOOO glad I took them up on that. I think every school probably has pro's and con's, is there such thing as a 'perfect' school because every student is different. When the admissions lady called me today, she asked me what I thought. . . . what do I say? I could give her a typical bland review and sugar coat my observations, but what good does that do? So I was honest. I started with what I liked, then what I found discouraging, like how all the students just seemed unprofessional in personal appearance. I mean if you're going into a beauty/fashion kind of career then learning to present yourself that way should be a HUGE priority. The facility/ classroom & break room where boring and un-inspiring. I don't know how any student would feel creative in that space. The instructors all seemed nice and knowledgeable but clientele and walk-ins would be sparse. I want as much opportunity to work with 'actual' people. I didn't really get the impression that any of the students were very 'excited' to be there. Also 10 out of 30 girls just "didn't" show up that day, hmmmmmm, that's concerning. It's nice to be able to have checked it out, and I just don't think its the right fit for my personality. It went against my 'people pleaser' personality to tell them that I thought their program was a disappointment. But I could not bring myself to 'fake' any kind of excitement that I DIDN'T feel while I was there at the school. If more companies get back honest feedback even if it's negative, they should appreciate and learn from it.

So the search goes on, decisions are not being made, my plans are on hold. . .and that's okay because I am moving forward, I am taking life less seriously :) It's my future and I want to make sure I do what is best for me. I have so many options I can still explore. I have many, many interests, so I am confident when I know what IS the right fit I will be ready.

I am working on not worrying about pleasing everyone else. That's more stress than I need to put on myself. I have gone through my entire life worrying about that. Stressed out that I will disappoint other people. . .and frankly it's silly. So what?, not everyone is going to think I am wonderful, I am learning to accept that :)

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12 years ago today. . . .

                                   Happiest Day of my LIFE!

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12 Years

It really has been an easy 12 years . . .except for all the hard times :) As I reflect back on my life 12 years exactly to January 7th at 11:15pm, I know I was about as awake as I am now. I don't remember getting much sleep at all from the excitement and anticipation of my wedding day! I was 19 yrs old, not quite 20. I had a few people who thought I was too young to marry. They thought perhaps I needed to "explore my life" more. However, of all the things I have done and all the decisions I have made in my lifetime getting married to Bryan was my best one.

Our life together has been many things but ordinary and boring are far from how I would describe it. I know I blog about how much I love my husband so I don't want to repeat myself again. But for the record, I love my husband more than anything in this world. . .more than myself. I used to write in my journal almost every night for a lot of years. (blogging has kinda taken over that role) But as I go back and read them I spent one year ending my journal entries with a reason I loved Bryan. I kept track and numbered each one. It's fun to go back and read those. Some of them were BIG reasons and some were small, but each one made up all the great qualities that make me fall in love with him over and over again every day.

12 years is how many years I spent total in school. Those 12 years seemed like an eternity. Crazy how 12 years with Bryan seems like it went by so fast. I must have not enjoyed school very much! Anyone reading my blog tomorrow will probably get sick of reading about why I love Bryan, cuz I might dig that journal out and list all the reasons.

A quote from one of my all time favorite movies (and soundtrack)
"Above all things I believe in love. Love is like oxygen. Love is a many-splendored thing, love lifts us up where we belong, all you need is love."
Moulin Rouge quote

Just a funny picture I did using Photoshop. . .our family. . .notice Bella in the background?

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Is my heart in it?

I have posted about "what next" and I am set to start cosmetology school in February. . . but I have felt torn, as I have mentioned before. Will my heart really be in it? Will I feel satisfied and complete? Will I be happy? I honestly don't know the answer to any of those things. I have been constantly thinking about a casting post I saw a few weeks ago. I can't stop thinking about it. It was a notice for an internship for an acting/casting company based here in Norman. They cast most of the acting work for surrounding areas including Dallas. It would be a 'no pay' deal. . .but I am getting used to those. Unfortunately that tends to come hand in hand with acting :) I just can't leave that opportunity unexplored, so I sent off a cover letter and resume tonight. I should hear back from them with plenty of time to know whether I will continue with my current plan of cosmetology. I just know I must consider the possibility that this would be a great opportunity and I should not pass it up. It could open the right doors for me here, or at least allow me to learn a new perspective and insight to the flipside of casting.

I have my hesitations with cosmetology. The main concern of course is my precious cargo getting damaged by the chemicals used in that profession. Along with concerns of working and losing my medicare benefits. I have already shown a track record of NO INCOME from acting. lol. But this doesn't mean cosmetology is ruled out. I do have two things I enjoy very much one is obviously acting/performing and the other is HAIR.

So I will leave this one up to God. I don't know what he has planned for me, I do know that he will help me do whatever will make me happy. I always know when I have made a good choice. It's hard to explain, but I just know.

My heart and soul and hopes and dreams all belong to Acting. . .I can't explain it, but that is where my heart truly belongs. So I would be going against myself if I didn't at least consider this option.

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Being Transformed

If you haven't noticed I love butterflies but mostly because of what they represent for me in my life. They are a very beautiful creature and they come in many sizes and colors which is one reason I like them. But for me the true fascination with them it how a butterfly becomes a butterfly. A butterfly is not born. . .it is transformed. I look at my life pre-transplant, and I feel as though that was my life as a 'calapiter' (as my sister calls them). Being a caterpillar is what a butterfly starts out life as being. I feel my life prepared me with the necessary foundation for who/what I was capable of becoming. My cocooning stage was months in the ICU and recovery at UPMC.

When I woke up from that experience and I took in a full breath of air with ease, I became overwhelmed with emotion. I know what it feels like when a butterfly spreads her wings and is no longer limited in a caterpillar form. The sky becomes her limit. Butterflies don't seem to stay still for very long. . . .maybe it's because they are afraid if they stop flying they will become a caterpillar again. Or maybe it's because they are enjoying their second life!

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Frustrated and bugged

I am trying to get settled in Norman. It's been kinds tough. For one. . .I am hoping to find a hospital/lab to start getting my blood work done. It's is difficult now that we are down to just one vehicle which Bryan takes to work early every morning. That makes things hard. There is not a hospital/lab within walkng distance like there was in Phoenix. I am going to look into a home health nurse to come draw the blood at my apartment, but I am not sure if medicare covers that. I will find out. I also called the CF adult clinic last week to schedule an appointment, but the office was closed for the last 10 days! I received an email from my doctor telling me that they have not been receiving my labs and PFT's. The last PFT they have on file is from May which was when I was in Pittsburgh last!! I know I had 2 done in Phoenix since then. I found the blog post from Sept where I happen to post my PFT results. It just bugs me that I am told the results are faxed, but at some point they don't get from point A to point B. It just makes me look bad! The draw back to being so far from my transplant center I guess. I shouldn't have to be babysitting either hospitals they should be able to communicate and work together! So tomorrow I am going to go into Norman Regional and get the information I need to get labs done then I have to get my rent paid. Bryan has to be at work at 2pm. . .so tomorrow is the only day to get it done this week. It's things like this that just eat at me so bad to the point I can't sleep. I am frustrated and cannot do anything about it! . . .. .okay. . . . . counting to 10. . . . .moving forward. . . .what's done is done and I can only move forward and make sure this doesn't happen again. Right?

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Moving Forward

Moving Forward is my 2011 personal slogan. I don't know what this new year will bring me or where it will take me, but I do know that I can always be moving forward. I feel "stuck" sometimes, but rarely do I sit idle for too long. I believe it's a great advantage to be able to look back on what we have done, endured and accomplished. . .and even our "failures" or mistakes because all those things make up what we do tomorrow. Always moving forward even if sometimes it's not in the direction we "think" we want to be going :) I know where I "want" to be in life, but that doesn't mean taking the more scenic route or even perhaps some detours will keep me from getting there. The only thing that stands in my way of going forward in my life is me. Stopping is not an option, there is no putting it into reverse. . .what is done is done and forward is the only way.

I think about 'what if myself as a young girl could look at what I've done in life, would she be disappointed?'  Maybe a little, because when I was a young girl I didn't see how hard life can really be. I also honestly think she would be pretty impressed with all the things I have done, despite the lack of an Oscar :)  I had an idea of what I wanted in life when I was as young as 8 or 9 yrs old. But if I had stuck to that plan, then I would perhaps be a movie star, but I wouldn't be a wife, had taken in foster children, or had a lung transplant . . . I didn't ever see those things in my future until they were right in front of me. I've had to learn to fulfill both my childhood dreams and my adult needs/wants.  If I had stuck to my 'childhood life plan' I would also be eating Speghetti O's every day. . . . wait, I do that :) Well, even though it can be tough to feel like my life is everything I dreamed it would be, the truth is there are things that are more miraculous than what I could have dreamt about. My 2011 will be all the things that I need it to be and that is all I can ask for in life.  If I keep moving forward and looking inward then true happiness will fill my 2011.

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