Dear Abbey — An Australian Profile in Courage
Abbey Jones is a lovely 21 year old woman who lives in Sydney Australia but Abbey doesn’t have the life of other 21 year olds because she has an almost unpronounceable disease. It’s called Bronchiectasis, a malady that seriously affects a person’s breathing. Some say that the only way to explain what it’s like to have Bronchiectasis is to try breathing through a drinking straw all day and that’s what you would feel like on good days. Cystic fibrosis causes about a third of all bronchiectasis cases in the United States.
According to the American Lung Association Bronchiectasis is a condition in which the lungs’ airways are abnormally stretched and widened. This stretching and widening is caused by mucus blockage. More and more mucus builds up in the airways, allowing bacteria to grow. This leads to infection.
Bronchiectasis can develop at any age. It begins most often in childhood, but symptoms may not appear until much later. Bronchiectasis can occur as part of a birth defect or as a result of injury or other diseases, like tuberculosis, pneumonia and influenza. It also can be caused by a blockage in your airways due to a growth or something you inhaled as a child such as a piece of a toy or peanut.
Bronchiectasis cannot be cured. But with proper treatment most people with bronchiectasis can live a normal life. That last sentence may be true for some, but it sure hasn’t been true for Abbey.
When you look at the picture to the left you would not suspect a thing is wrong with Abbey but this picture was taken on one of the few furloughs she’s had from the Intensive Care Unit which seems to be where she spends a good deal of her young life.
Abbey’s Bronchiectasis is further complicated by a rare form of asthma and she is subject to getting pneumonia quite frequently. I have only known Abbey for a few months and in that time she has had pneumonia twice and has only been out of the hospital for about three weeks.
Abbey and I met on Facebook. While she is not on a transplant list now, she has a keen awareness of donation/transplantation issues and is very familiar with almost all lung diseases.
Abbey prefers the picture above but this picture is one she also posted. It is a the way she looks most of the time, connected by a serpentine maze of cords and tubes and wires and who knows what technology…but it keeps her alive and and her mind and imagination are always at work.
Like anyone with a debilitating disease Abbey has down days but for the most part her spirit is good and she talks about what she is experiencing. Abbey has a blog. Below are a few of her entries. I think they will tell you a little about this brave, upbeat and inspirational young woman. World…Meet Abbey Jones.
There it is, that little piece of equipment that will make or break.
That grey box labelled “cf clinic” i’ve gotten to know far too well- it defines me.
Its sides are curved for comfortable handling- if only it helped.
Buttons on its suface, my known of by heart MR number jabbed in – failure and decline.
Physio’s flick through years of results- finding a once healthy and satisfying FEV1 of 3.4L
As if the numbers weren’t enough. A small screen on top graphs the badness.
You can pinpoint it on the graph- a sharp dip, the exact moment airways collapse.
THEN just to throw in your face how much you suck- it shows your graph next to the ideal.
I look down at you, hoping i have what it takes to get a decent figure.
If i can do this- i get to go home.
A take the biggest breathe i can and blow into the white tube within you with all i have.
I can hear the rumble of rubbish in the bottom of my lungs as a try to squeeze out every last bit of air.
My face gets redder as i try harder. You keep beeping.
I wait for you to process. If only i could tweak something within you to show me something good.
Waiting, Waiting, Waiting.
BAM. FEV1- 1.49L
I hear you from a mile away; I hear the badness,
I hear the thumping of the physios; the buzzing of the nebs,
And your laugh- although crackly and wheezy- full of joy.
You’re kept up night after night coughing;
You struggle day after day to walk up the 5 flights of stairs to your classroom.
Slowly- but surely- you are dying.
I can tell you are young; I can tell you have CF.
I can tell all this before you even open the curtain; because I have heard it before.
I watch you give it your best to make that spiro spit out a good number,
I watch you use PEP for until you are red in the face just hoping it will make a difference.
Ultimately though- both you and I know that your life will be cut devastatingly short.
All you can do is hope- hope that one day there will be a cure;
That one day you can live just as long as those who aren’t affected.
You share so much joy; it’s as if you have to fit it all into a shorter life span.
You share with others the kind of joy that comes with knowledge;
Knowledge that we should live everyday as if it is our first- not our last.
You know it’s the “hello’s” that are more important than any “goodbye”.
The transplant might kill you, it may give you 5 more years,
Yet unfortunately, In the end, CF is too strong, it thinks it has won the battle.
But you- you are the one that beat CF- you never let it stop you living life to the fullest.
For now, just keep breathing.
But when you are tired; when you can’t take it anymore- sleep, sleep forever and eternity in peace;
And say a big hello to a world so amazing you could never have imagined.
Living with cystic fibrosis is hard, uncomfortable and timeconsuming. A life potentially dominated by endless tablets, nebs, hospital admissions and physio; just in an attempt to extend the lifespan of the lungs.
What people manage to achieve despite the odds that are stacked against them is astounding. Recent research has lead to medication breakthroughs resulting in significantly increased life expectancy.
The 25th of May marks “65 Roses Day” where fundraising takes place and awareness of the condition is increased. The story of how the day came to be called “65 Roses” is really sweet and something I wanted to share:
65 Roses is what some children with CF call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation USA in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had Cystic Fibrosis. With some trepidation, Mary posed the question, What am I working for, Richard?”
“You are working for 65 Roses,” he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his body to hers. He could not see the tears running down Mary’s cheeks as she stammered, Yes Richard, I’m working for 65 Roses.”
I hate you, I really do.
But I love you- I promise.
You’re special, very special.
So very special that I can’t make sense of you.
You’ve changed me,
You’ve given me insight,
You’ve granted me understanding
But please- I’ve had enough.
Please, just once- let me blow you away.
May you float among the clouds.
Me free of you, you free of me.
Just the way it is meant to be.
Abbey’s blogs can be found at http://takemybreatheaway.wordpress.com/ Abbey has a page you can visit,too it is http://www.facebook.com/groups/411648502237896/?fref=ts
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at email@example.com. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to firstname.lastname@example.org and usually you will get a copy the same day.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.
Bob Aronson Newheart de Bob es un receptor de trasplante cardiaco 2007, el fundador de Facebook, casi 2.500 Iniciativa miembro de Trasplante de Órganos y el autor de la mayoría de los blogs de donación / trasplante.
Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en email@example.com. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.
Por favor vea nuestro video “Gracias desde el fondo de mi corazón Donante” en http://www.organti.org Este video fue producido para promover la donación de órganos por lo que es libre y no se necesita permiso para su uso.
Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a firstname.lastname@example.org y por lo general usted recibirá una copia del mismo día.
Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.