Ode to 02

For English class I had to write a poem about a peice of technology. I decided to write one to my oxygen!
Here it is:

ODE TO O2

I have known you all my life
Since the moment I was born
You gave me the precious breath of life
At first you were just attached to a wall
But you changed forms as I grew

When I came home
You became a giant green tank
That my mom and I would dress up in clothes just for fun
You were in numerous baby pictures of me
You added a lovely medical feel to our kitchen

Then when I got into grade school we got another one of you
This one would plug into the wall and had wheels so I could push you around
The best part was that you looked like R2D2’s twin

Then when I was 12
We got a “vertically challenged” version of you
When I was so sick but wanted to go to class
You allowed me to do so
I would sit you down on the mini cart
And pull you behind me when I was at school

Finally when I was 16
We got the “fun size” oxygen concentrator
For the first time I could put you in a backpack
And go up to the Arizonian Mountains
Where I had never been before because it was always too high an elevation for me
Oh but not anymore
Because I had you

You’re still part of my every-day life
Each night before I go to bed
I plug you into the wall
Push the switch
Put your clear plastic tubes in my nose
And crawl into bed
Your constant humming, hissing and clicking would drive anyone else crazy
But not me
It is a reminder that you have been there for me
Helping me live

I thought about doing one to my breathing treatment (SVN Machine.) But I decided this was a better subject. =) Another girl who took the Creative Writing class did an Ode to her Insulin Pump since she is Diabetic. What piece of technology would you do a poem to?

Love and Hope,
Becca

Future???

Hi Everyone,

The 'What is my future going to be like?' is a question that has been coming to my mind lately. Partially because now that I am 18 years old and just a few months away from graduating high school; people have been asking me about my plans for college and the rest of my life. It's a scary thought, for any young adult; having to think of their future and making decisions about it. But for me, as a chronically ill teen it seems even tougher.

What will I do about insurance? What about if I have to go on my parent's insurance and their premiums sky rocket? Will they have to sell their home? Will we have to move out of state just to get better insurance? Will my mom have to get a job? What will happen to my dad's small business?

What will I do about covering for a heart-lung transplant? In the state of Arizona, once you turn 21, the goverment will not pay for the transplant. A lot of people just ask 'Why not get it now?' the answer is, my quality of life is too good. People have the misconception that if you need a transplant, you should get it right away. They also believe it fixes everything. It doesn't. Transplants are tricky things. Here are some things you should know about heart-lung transplants:

• You don't want to get it until you ABSOLOUTELY have to! (this goes for all transplants.)

The reason you wait as long as possble are:

• According to my transplant doctor in 2007 - 2008, less than 50% of patients are alive in 5 years after reciving a heart-lung transplant. - I want to wait until 5 years is EXTRA time to my life. Right now, 5 years is NOT extra time because I am doing so well. I have a life, when I stop having a life because of my heart and lungs is a time when we talk about transplants. The doctors said that they go off numbers but also how I as a patient feel. An example they gave me:
• My pressures (in my lungs; not high blood pressure.) could be 100, but my quality of life could be WONDERFUL, so despite the large numbers; the transplant would not be needed. But if my pressures were 80, but my quality of life was horrible, then we would start talking about transplants. It comes down to quality of life, not just numbers and science.

• Another reason is medically technologoy. The longer I wait, the more research is done into transplants. With more research comes better medicines, better medicines means less chances of infections and rejections; meaning my chances of living past the 5 year mark becomes better.

But the main reason to wait is really quality of life. My life is too good to chance it with a transplant that would cut my life down to less than 5 years when at this point in my life, there is no time limit!

Some other concerns with my life as I become older:
What will I do about having money while being a full time student? I know that I would not be able to work and go to school without jeopardizing my health. Heck, going to high school and being a full time pateint is tough for me to do!

What about if I get sick and have to drop out of college? Will that happen to me? If so, can I pick up in college where I left off? Or will I have to repeat?

Will I ever find a place that will hire me even though of my pre-existing condition? I know being a nurse at a hospital should have good health insurance. But usually that hospital only lets you go to certain other hospitals (if not itself), and what if those hospitals aren't the ones that are best for me and what I need done?

For the longest time (actually, all my life.) I depended on my mom and dad, as do most kids living with a Chronic Illness. For the longest time I only got scared when I went into the hospital. But now as I grow older, I become scared about more than that. I am starting to share the burden of the insurance issue as the major problem.

But also just trying to figure out my health. Right now my Thyroid is going crazy, and my pottasium is really low. I am exhausted 24/7, going to school has started to become a problem for me. I sleep almost all day on the weekends and even then I am still sluggish and tired. We are hoping it's just because of the Thyroid and once I get some medicine it will help. Keep your fingers crossed for me!

If any of you who are reading this are doctors to pediatrics or young adults, please take this to heart. We have a lot going on in our lives. We are trying to live a normal life while we have the burden of our health and sadly, sometimes insurance problems on our shoulders. Meanwhile we worry about grades, finding a college, trying to decide if we can work while we go to school and also trying to have a "normal" life. Life as a Chornically Ill Teen and Young Adult is not what people think it is. It is a sad, miraculous, triumphant, dis-heartening and frightning life that we live... please try to be understanding.

Love and Hope,
Becca

Pain That Comes From Caring

Hi Everyone,

So I suppose people are wondering what the title means. Well I go to the high school where we have a school magazine. I am on the publication staff and I wrote an editorial for the school magazine. My editorial was on why you shouldn't use the word retard. This subject is very near and dear to my heart because I have an older sister who has a learning disability, a neice who has Cerebal Palsy and one of my older sisters used to be a teacher in the Special Education class at my elementary school when I was little. Not only for those reasons, but because I have been considered different, weird, un-worthy and even made fun of my life because of my heart and lung disease; I know what it feels like for this people. People who are loving, caring, understanding and most importantly; human.

Well the school magazine got out and I didn't hear a lot about it. Not even from my teachers, most likely because I put in a paragraph about how dissapointed I am in them for not stepping up and stopping the use of the word when kids say it. And I mentioned how THEY say it too and how hurtful it is to hear people who are supposed to be my role-models using a word that hurts others. The two teachers I had in mind when I wrote the article, obviously did not get the message because they still use it. But anyways. . .

It was the night of the first show I believe, in the school play. I was backstage talknig with a few actors when a boy in the show brought up the editorial. When I tried to explain to him how I felt about it, it fell on deaf ears. He and about 4 other boys started to just taunt me about it. They would purposely use the word around me and when I tried to ask them not to they would reply with 'Becca just drop it.' And yet they wouldn't stop; so how did they expect me to just drop it?

While I understand that immaturity is all a part of high school, these are Seniors and Juniors. . . don't you think by this time they would be more mature? I wanted to go to Mrs. Colson (the drama director) and tell her what had happened. . . except her son was one of the taunters. And on top of that, she was one of the teachers who used the word retard, so she probably got offended by the editorial anyways.

I suppose some people may say that I asked for it. That I wrote that editorial knowing that there would be hell to pay. But that doesn't mean that I can't try to change the world. Martin Luther King knew that he could be thrown in jail, that people would attack him. But did that stop him? No. And it won't stop me either. The bad and good part about having a chronic illness is that you are more mature than people your age. But the best part is, you know what its like to be different. You care about others. You want everyone to be treated equally. You want everyone to be accepted and loved for who they are; because that wasn't always the case with you.

I want to change the way this society thinks. I want people to be more understanding, more caring, loving, accepting and kind. I can't wait to get out into the real world, where (hopefully) the highschool immaturity and the 'I-know-everything' mentallity is gone. I won't stop talking or stop advocating for those who can't do that for themselves. I won't stop loving and accepting others.

With Love and Hope,
Becca

About Me

Hi Everyone,

My name is Becca and I am chornically ill. I love writing so I figured that I would start a blog and since I am living with TOF, PA and PH I would write about being a chronically ill child.
Here is some websites about my defects:
http://www.americanheart.org/presenter.jhtml?identifier=11071
http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/What-is-Pulmonary-Hypertension_UCM_301792_Article.jsp
and lastly:
http://www.americanheart.org/presenter.jhtml?identifier=1303

I want to take my feelings and gift for the written word and transform lives and bring awwarness to these diseases. I hope to impact people and let others know just how truly special people who are chronically ill are.

My first post was something my mom wrote about my miracles and all that I have been through. So I decided that this post I would give you a little more insight into who I am. I want to show hope with my blog and let others know that there is hope out there. Just don't give up.

As a senior I have had many people ask me about my future and for the first time I realize that I have a shot at going into the future. I have been so sick for so long, but this year I am truly thriving. I will graduate high school, I will go to prom, I will go to college, I will become a nurse. It has taken a lot more work to get where I am today; but it was all worth it. I am finally living life and I want to remind you all to do the same. Try not to worry as much (despite how scarry it is.) and live your life. We truly only get one chance and we understand that more than anyone else. So when you wake up in the morning, smile to yourself and remember 'I made it to this day, I can make it to the next.'

Hope and Love,
Becca

My Miracles

This was written by mom about me. She sent this out a few years ago on my birthday.

At one month old, when we became Becca's forever family we were told that "Becca had a 13% chance of survival to the age of 5."When she was 3 months old we were told by the doctors there was nothing more they could do... they felt Becca had 6 months or less to live. Hospice started coming to our house to help us through the darkness.When Becca was a year old we were told that "things" had changed with her heart. There was a surgical procedure that could be performed that would enable her to grow up! Miracle #1.On November 19th 1993 when she was 13 months old Becca had her second open heart surgery. The operation went well but Becca would not come off of the heart and lung machine. She was put on ECMO, a portable heart lung machine considered a "heroic measure" and taken to the Intensive Care Unit. Four days later she was taken off of ECMO and a month later she left the hospital.

Miracle #2.When Becca was 26 months old we traveled to UCLA for her 3rd surgery. We had been told it was very high risk and she would have a very "rocky" recovery period. Becca surprised everyone, did wonderfully and was home in 10 days.

Miracle # 3.When Becca was 5years old she had her 7th heart catherization. In this cath massive ballooning and the placement of 2 stents were performed. Becca began bleeding from her lungs... they felt it would be very difficult to stop the bleeding, and if the bleeding did not stop she would die.

Miracle # 4.Becca had surgery at Lucile Packard Children's Hospital (LPCH), part of Stanford, when she was 12 years old. She did well but 2 days after we returned home she was back in a local hospital’s Intensive Care Unit fighting desperately for her life. During surgery she had contracted a deadly infection Methicillin Resistant Stafyloccus Arus (MRSA) that raged through her body. After 5 weeks in intensive care Becca went home very weak, in a wheel chair, with a PIC line and 6 more weeks of IV medicine to finish.

Miracle # 5.In her 8th grade year Becca started having arrhythmias. After trying for 4 months to control her irregular heart beats her condition turned life threatening and she was life-flighted to LPCH. She spent 2 weeks in the intensive care unit as they increased a strong anti-arrhythmia medicine and placed into Becca an experimental pacemaker/defibrillator.

Miracle #6.In October of 2007 Becca was evaluated at for a Heart Lung Transplant at Lucille Packard Children’s Hospital. Thankfully, at that time it was determined that Becca could still be medically managed. She is being followed closely. Every 3 months she travels to Stanford for testing by the transplant team, her electrophysiologist and her pulmonary hypertension cardiologist.Today Becca is feeling well. She is bright, beautiful, funny, sensitive, loving, and "healthy" for her.

They say "It takes a village to raise a child." For Becca the saying would need to be changed to "It has taken five hospitals (in 3 different states), 4 pediatric cardiothoracic surgeons, several pediatric cardiologists, intensivists, pulmonologists, pulmonary hypertension specialists, infectious specialists, nurse practioners, nurses, respiratory therapists, a wonderful pediatrician, a special child psychologist, a loving family, caring friends andunderstanding teachers and schools to raise Becca."If Children have the ability to ignore odds and percentages, then maybewe can all learn from them. When you think about it, what other chance isthere but to HOPE? We have two options, medically and emotionally: give up,or FIGHT LIKE HELL". -Lance Armstrong

I have been through a lot, but I will not stop fighting. I cannot stop fighting.
Love,
Becca