Transplant Update

OKay everyone...I'm sorry I have been neglecting my blog. I vowed to start blogging after my CCA stint was over, and here I am not blogging for weeks. I guess I need a break, but also I've just been so busy. I have so many updates for you it's ridiculous.

I'm in the hospital right now to get my normal clean out, although my admission was rushed on account of a cold I caught. I've been here about a week and a half now. I've got at least another week and a half to go.

As you know I decided to go ahead with the transplant. The process has been long, and arduous so far. I became eligible for Medicare in February, so my other insurance was cancelled automatically. My mom and I must have spent weeks trying to get all of our bases covered insurance wise. We finally got it all done, and were able to move onto the referral process. Yay! We talked to the coordinator up at UW, and decided on having the first meet and greet appointment in the next 4 weeks. It was a good decision because I would be fresh out of the hospital and feeling as good as I could. However, a few days later we get a call from the scheduler who says if I don't come on May 3rd (this coming monday) for the appointment, than I won't get in till June. The sad thing is, I know I couldn't wait till June. I want to be listed by October.
So I'm in the hospital, and oddly enough my doctors feel very strongly that I go to this appointment. Later today I'm being discharged, going home to stay the night, and then leaving for Seattle on Sunday. My mom and I are going to stay in a hotel, and head to UW at 7:30 Monday morning. After that we are going to come home, only so I can get re-admitted. YES....RE ADMITTED on Tuesday! How weird. I basically am getting a long weekend away from my hospital stay!? The only thing that is annoying to me is that I have to pack all my stuff and bring it home, only to bring it back and unpack in a new room on Tuesday.
Whatever. It's all for the cause!!!

I'm wiped, and I have to pack in the morning...well later in the morning. I'm sure you are familiar with the CF insomnia....

Rose Garden

Today I went on a little expedition to the Rose Garden here in Portland. I am sad to say that none of the roses were in bloom yet. BUT the grounds were gorgeous, and the one spot that caught my eye was the Shakespeare garden. It's really just a tribute I suppose. Here is a little picture of it. The quote is what the engraved stone on the wall says. 

It's on a hill, and to get down to the garden you have to go down stairs.....I haven't really done anything active in a while, so I had no idea how hard it really is to have such low lung capacity. I felt like I was going to pass out. I was willing my legs to move half way up the hill. Blagh! It's sick. It makes me feel sick. On the bright side, I got a good workout. :)

Update on the transplant:

All of the insurance stuff is handled! YAY! It's incredibly weird navigating through the world of social security, and medicare. I am so happy about my insurance though, and am deeply in debt to the man who gave us the lowdown on what we needed. He is a miracle. 

So we called our contact at the Cf clinic to tell them we got the insurance stuff handled. Now we are on to the referral part of the game. We will be referred to UW in Seattle, and hopefully go up in the next month to meet the team. I hope it goes that fast anyways. Going up those stairs today made me wonder how long it's going to be before I have to be on oxygen all the time. And that thought made me want to throw myself down the hill. It's amazing how far you can fall in a year. 

I'm off.

L,

Phee

Cca #10: Final-e

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, a 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 life time 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

Cca #9: Faith?

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