CCA Blog

Here's another blog for you to enjoy!!

This week, I went to the mall, and went school clothes shopping. That is any teenager's favorite part of summer. I can not believe it is getting that close to the school year, and then I'll be a freshman! Oh boy.

Friday and Saturday, I was busy holding another rummage sale. It was an ok weekend but it was so hot outside.  But it was worth it I guess, because I got out of doing chores all day!

This week I have an infusion, I have my infusions at Legacy Emmanual in the day treatment center.  I usually have treatments on Fridays because it's my mom's day off but they did not have any space open Friday so I'm going Wednesday.  Wednesday are fun days at Emmanual, I feel. It's BINGO day.  They play bingo on the TV and if you bingo you get a prize.  So it will be a treat.

After my infusion treatment I feel real tired. I'm not sure if it's the medicine or just the process of getting a treatment.  But I always fall asleep before my mom even hits the freeway to get home.  The treatments do make me feel better for a few weeks.  My body tends to get slushy feeling and I have pain in my legs.  The medicine not only protects my kidney and other organs in my body but it does help with the fatigue and pain I feel from having Fabry.  

My dad had a kidney transplant and my grandmother is still on dialysis waiting for a kidney match.  She does not have a living donor at this time so she is on the national kidney waiting list.  I pray my grandma get one soon.  She has been on dialysis for almost three years now.  My grandma and dad have fabry disease.

Well, I hope everyone is having a great summer. 

This week was awesome. I had flag camp for my colorguard and I learned a lot of new moves. My body is really sore.  I don't have too much planned for summer vacation. I did however go to wonderland last week, and my sister and I did a bit of babysitting to put some fun money in our pockets. I really want a lap top of my own so my goal for the summer is to save all my allowance and other money I earn, to go towards that goal of buying my very own lap top.

There is still a shortage on my medication.  I have not had any medication since the end of May. I will have one dose of medication available on July 21^st, and because I have a port I need to get it flushed on a regular basis so I did that last week.  My doctor has found another drug manufacturer that makes my medication so hopefully I'll be back on my normal schedule soon.  My medication helps protect all the organs in my body.  My mom is full of worry right now for me because she's afraid of what the lack of medication is going to do. But we have faith that everything is in God's timing.

I have something else to share with you and to all the kids out there beware!  My mom has already started buying school supplies.  LOL!!

Until next time!

Hayley Bivins

Ok so here's another blog for the week!!! Ok first thing, was that school got out. YAY!!!! I had dance camp, which was pure awesomeness, except for the post camp pains. But my mom says that the pains will go away as my body gets used to using my muscles.

 I went to the Oregon zoo last weekend and we walked through the new dinosaur exhibit, it was real cool, so I encourage all to go see it.

There is still a shortage on my medication.  I was not able to get an infusion in June and I'm not sure if I will in July.  I hope so because Fabry disease can cause chronic pain. I experience a lot of pain in my legs and my legs can go numb. My mom says I need to pay close attention while I'm at color guard practice so I don't fall.  I have a motto when it comes to having Fabry disease. My mom and I tell each other this, " you can let this disease control you, or you can control this disease." I choose to control the disease and do what brings me happiness.

Another blog coming soon!!! ©Hayley

Hey so I'm back and wow was this week very tight.

First off, I was in the Rose day parade that happened in Portland, with my color guard.  Then I was getting big final projects done for school, and I was launching bottle rockets at school, and had to type the whole thing up.

But anyways, I haven't had an infusion this week.

Oh well, at least my apartment pool is open and now I can swim. I'm hoping to have a pool party with all my color guard team mates. Oh!! And this week I had my completion ceremony for ending 8^th grade!!!

Well I guess that's all of this weeks highlights for me to tell you for this week!!

Keep reading!!! Thanks!!!

:)

Hey, it's Hayley again and I'm back with my first blog! So this Friday I had an infusion. I probably won't have another until sometime in July because there is a shortage of my medication. The way I get my medicine is through a port. I have had my port for 1.5 years and in my opinion it is easier than getting accessed in my arm. To help ease the pain of getting accessed I use a numbing cream that most kids use. I also have a Chemo Pal through CCA.  Her name is Kerry. She is the best!

Anyway, this week I had parade rehearsal with my color guard buddies, youth group, and of course, my infusion. And like any kid who goes to school, I've been doing homework. And also I've been planning a band with my friend Melissa at school! I am going to try and learn to play the electric guitar. My grandpa plays, so maybe I will ask him to give me lessons.

So that's about it for this week. I hope you'll come back again to find out what's been going on with me.

Thanks,

Hayley

Writing these blogs for the past 3 months has been a very great experience for me. I put into words my own personal philosophies to share with you. I hope that you enjoyed them, and maybe took something from them. I realize that maybe I didn't share a lot about myself other than my ideals, so for my last blog that's what I'm going to do.

I'm an only child of a single parent. My dad passed away when I was a baby, and though I don't remember him I hear we had quite the relationship. My mom is my best and most trusted friend in the world.  We have been through everything together, so we are not only best friends - we're war comrades. I can't imagine anyone better to be in the trenches with. She has 7 siblings, and 20 something nieces and nephews. My family is big, and has always been so loving and supportive of me and my mom. I am forever grateful to them for always being a call away. My life has been filled with love, and that's because of my amazing family.

Being diagnosed with CF at 6 weeks old prevented me from knowing any other kind of life. I tried to be a normal kid, and at one point I was so angry because it seemed impossible. In my teenage years I still strived to be normal, but it's now when I'm at the beginning of adulthood that I realize I'm just not cut out for normal. It's not because of my disease, although that's probably the catalyst, normal is just not who I am. I am an artist, a free thinker, an "old soul", a lover of originality and creativity, someone who refuses to live a dull existence. I've always thought that the best way to live life is to live it creatively. I'd like to tell you that I'm a very proud owner of the life I'm living. So I must be doing something right. 

Everything I have shared with you has taken me a lifetime to learn, and even now I'm figuring new things out everyday. But the last piece of advice I have to give, the thing I have learned has the most value, is this: LIVE! Go out in the world and live the life you have. Love the life you have. Be the owner of your life. Because it's the most valuable thing you could ever own.

Thank you for reading.

Love,

Phoebe

P.S. I have done a lot with CCA, and I can say that it's an amazing group of people doing very inspiring work. Thank you CCA for doing the incredible work you do, and thank you for allowing me to blog for you. It has been a true honor.

My time as guest blogger is almost up and there are a couple things more I want to tell you about. One of those things I haven't really gone over is faith.  A belief in God generally helps people get through the rough patches. 

At times I have been asked how I deal with having an incurable illness, chronic health issues, etc.  I have been asked about my religion, whether or not my belief in God is what gets me through.  I don't want to dwell on religion or God in this blog.  I just wanted to offer my version of "faith". 

Being of a certain faith helps people in tremendous ways; it gives them hope where there might not be any, it keeps them positive, it aids them in living healthier lives, and also helps them live more fulfilling lives. These are things that I have observed for myself.

However, I never was part of any faith while I was growing up. Although that's not uncommon by any means, I have found that a lot of people with CF, or any other chronic illness, are brought up as a member of a religion. It's logical that having a belief system and faith in a higher power would help someone who is ill. It's also safe to say that the people who experience illness through a loved one would also need that support. I know that the subject of religious beliefs can evoke strong discussions and emotions; what is true for some isn't true for others, and what helps some might not help everyone. But I know there are people out there like me who don't belong to a church, but who seek spiritual enlightenment and wellness. I know there are people like me who have made great strides in dealing with chronic illness without having a religious affiliation.  

My mom always taught me to look further into the world so I could really experience all that life had to offer. She taught me to believe in myself, and to make decisions in life based on what I thought was right or wrong, to understand about consequences of decisions I made (both good and bad), and to live in such a way that I would have no regrets. She allowed me to be an individual, and gave me freedom to form my own beliefs and make my own choices. Though I started as a baby with no beliefs, I eventually sprouted some, and here I am today 20 years old, my mind chock full of beliefs, some of which I have already shared with you in my previous blogs.

I don't bother with questions like "why me?", because it gets you nowhere. That is a dark abyss from which you may not escape, so don't go there.  It doesn't matter why. We are living in the present, and trying to live for the future. Everyone is eventually going to kick it.  Life is terminal.  So just live it and live it well!

I believe that I can steer my own course and create what I want out of life.  I believe that my sheer intention to live is the senior reason I am alive to blog about it.  I love my life.  I told my mom once that I didn't want to hear doctors tell me how long I had left and that I would stick around as long as I was interested in being here.   I really don't know if God has a plan for me or what it would be.  But, I know that I have a plan for myself and so far it's worked out pretty well.

Love,

Phoebe

I think that in life, especially life with a chronic illness, the future is unsure and unpredictable. We hold on to the big moments because they stand out, but it's not until we've been on the mental border of life and death that we start to appreciate life as it is.

Making the decision to get a lung transplant has made me admit a couple of things:

1. That being that end stage cystic fibrosis is a reality; it's not just some far off thing that could happen but isn't happening.  It isn't the type of thing you can really know until you are kind of close to it.
2. I'm not invincible.  Even though the odds are mostly in my favor, there could be a premature ending to my story.

Lesson learned!

I'm living for the present and the future.  I'm appreciating the life I have now, because in a few years I will most likely be living a completely different one.  And I'm learning the importance and significance of the little things in life I tended to overlook before.

I have become a connoisseur of these small things; these moments. I have found they add to your happiness without defining it.  Like having fits of laughter with my family, chasing my nephew around the house, snuggling up to a movie with my boyfriend, or just driving around on a nice day.

Call me a sap, but making the decision to get a lung transplant has left me with the feeling that life, and EVERYTHING in it, is short lived and should be cherished.  When I say short lived I just mean that time is fleeting, and things are always changing.  I have found myself going through these moments in slow motion, and locking them up. I am truly experiencing them; sucking every ounce of them up so I can retain the joy they bring me and use it later.

I think it's important for us to remember the way life was, and is.  Maybe I sound like a broken record, but remembering everything you've done so far (all the fun, all the struggles, the adventures, time spent with family and friends, time being sick, and time being well) gives you the motivation and the strength to make it to the future. Remembering simple times, and simple pleasures, and possibly even the boredom that sometimes accompanies them, makes the daily minutia of life a little more bearable. It reminds us that even when we're not experiencing light or dark times, there is still life in us.

Living with a chronic illness is a series of highs, lows and coasting, but there are small things in every day, and in every breath that could be cherished and held dear, and that's what I'm doing. 

How about you?

Love,

Phoebe

Something you don't know is that I was just in the hospital for almost 3 weeks to treat my CF. There are things that I learn from every hospital stay, and sometimes I just learn the same lesson again and again. So I thought I'd share a bit of that with you this week.

This is my formula for being a good patient without being just another body for doctors to put meds into.

1. Be gracious. These people are here to take care of you and help you get better.
2. Ask questions! If you don't understand something in the slightest you need to question it. Ask questions, and get educated. Knowledge is power after all.
3. Trust yourself. You are your own best ally. Knowing yourself and your body is the key to a successful doctor/patient relationship.
4. Make sure you know what your protocol is. You will be surprised how much you don't know about it until you ask someone what it is.
5. This is the one that I have learned too many times to count; Stand your ground. If you don't agree with something, or someone is refusing to accept what you say, repeat until understood. I have had to do this with all sorts of people in the hospital. It's the one that comes up most, and if you don't stand up for yourself and what you think is right, you will definitely feel victimized by the end of a hospital stay.

I want to elaborate more on each of those just so you can get the full idea.

When you are polite and gracious your doctors will like you way more, which definitely makes them more inclined to listen to anything you have to say. And that directly connects with #2, 4, and 5. My mom always tells me "Phoebe you can catch more bees with honey." It is so true!

Understanding your condition and your protocol are required to have any power over your illness. When you understand your illness you will be able to identify things that are happening with your body, and you will understand why you need to be adamant about treating it. Some kids I have seen don't really care what it is, or what needs to be done to treat it, they just go about their lives feeling like victims of something they can't control. Maybe you can't control the illness, but you can control what you are doing to make things worse or better. So ask your questions, be curious about your condition, and treat it accordingly.

Over the 19 or so years that I have been going through my own illness, I have learned a lot about myself. I have learned how my body works, what it likes, and what it doesn't, what it responds to, and how far it can be pushed. I have also learned how much strength it really does take to get through everything I have to. I can honestly say that if I didn't know what I know about myself I would not be here today. It's because I know my body that my doctors are able to treat what they can't see. It's because of #3 that I am who I am.

In my experience the best thing I have ever done is stick up for myself, and my rights as a patient. There are lots of people on your case, and sometimes they do not coordinate with each other. You will probably have to repeat most of what you say over and over again. So make sure your story is straight, and you state what you think. It is not fun to be patient road kill. Believe me when I say that if you are not being your own advocate and standing your ground you will get steam rolled.

All of the things I have listed in this blog tie together in some way. So keep it all in mind when doing anything with medical professionals, and you will for sure make it out a happier patient. We are not just fighting for our lives, we are fighting for the best care, and if we can't act accordingly than we most likely won't get it.

Until next time,

Phoebe

Lately I have been debating the concept of getting a lung transplant. Now I don't know if any of you know about Cystic Fibrosis (CF), but basically your lungs get so diseased you need new ones, or if you don't want to do that then you risk a premature death. Either way the chances are not statistically good you will reach middle age.

For many years I opted not to even look at the possibility that I may one day get a transplant; I just couldn't look at it. The concept was repulsive to me; the thought of having someone else's lungs inside me, not to mention the surgery itself just freaked me out!  My doctors have tried to talk me into it many times, but I was firm in my decision. It wasn't until recently I decided to reexamine the subject.

Now that you know the back story I'm going to tell you my thoughts.  For those of you who know I'm thinking about it, (you also know that I'm not really ready to talk about it.....) read on. This is probably the most you are ever going to get from me on the subject. It is a surprisingly highly emotionally charged subject for me right now and probably will be for a while.

I am 95% sure that I'm going to go for it.   (!!!!!)

My whole life has been about keeping my body going; it's been about staying healthy and in the meantime spending time with my friends and family living a semi-normal life. I have done a lot in my life.  I have accomplished many things that I am proud of. I am proud of them because I do them in spite of my chronic illness. But my disease is tied to EVERYTHING in my life. I do so well because I can acknowledge that the disease is part of me, but not become a victim of it. One thing I was surprised to learn is that I'm actually really healthy aside from my lungs, and my lungs are pretty bad off (capacity at 22%).

So, my lungs are worse now, and I'm at the point where if I don't get a transplant I wouldn't be able to stretch my life very far. I would certainly try, because dying the CF death has never been my reality; it has never been anywhere in my vision of the future.  However, it is a part of me, and whether I like it or not there is a fate tied to this disease. I've always taken care of myself, and I've been very adamant about not betraying my body by neglecting it. So to me, this is just that - not betraying my body, and also not cutting myself short. There are things I want in this life that I won't be able to do with the package I have now. I want to spend more time with my mom and my family. I want to marry my incredible boyfriend and spend the rest of my life with him (however long that may be). I want to create amazing things, and have adventures. I want to watch my nephew grow up. Someday I might also like to be a mom myself. Of course there is so much more than this, but those are my personal biggies.

The thought of dying and leaving everyone I love scares the crap out of me. I can barely stand it. And, it's because of them that I'm even willing to take such a risk; it's because of them that my life has been fun and full of love; it's because of them that I'm going to do it. The 95% of me is 100% on board, and the other 5% is just scared, but that is something I know I will work through on my own.

You can bet that when I am COMPLETELY decided I will not turn back.  I will be excited for the first deep breath I've probably ever taken.  It's weird to think that I don't know what deep breathing is like. I guess my life has just been a series of shallow breaths.

This is a big thing. Yes, it's a gamble. Yes, I could die. But I could also live; I could live more than I ever have. And the life that I've waited 20 years to start finally could.  My entire life has been leading up to this point. Everything I have gone through will give me the strength to do this.

I've only ever chosen life, and I'm going to continue doing that.

 Love, Phoebe