Cca #6: Transplant?

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

CCa #5: Family

I love my family. My family is HUGE. My mom is the sixth child of a family that has eight children. There are so many aunties and uncles and cousins and nieces and nephews that its hard to keep track of birthdays and special days. There is, however, one thing that stands out and that is L-O-V-E.

I know it sounds corny, but my family is all about love and support. We are a family that is dedicated to each other. Let me illustrate: when I was just two years old and had my first hospitalization my uncle Paul drove all the way from Minnesota because he heard I was in the hospital. He showed up at 2am at the hospital because that is when he arrived in town. There are many instances like this that have happened over the years demonstrating the many ways that my family has been there for me. Like the time my aunt drove up from California to help my mom while I was doing home IV meds and made me a special drawer in the kitchen for tea. Or, the when my nana moved up from New Mexico and spent three years in Oregon (away from the sun!) so that she could be near us. Or, the many times my aunt Maxine has come down to Portland with Halloween costumes, Christmas presents, birthday surprises, etc. My aunt Shauna used to sit through every poke and procedure with me because she was the only one who could calm my nerves!

I am lucky. I know that and am so grateful that I have a family who loves me (and who I love right back!) and who support me and give me strength. I am always sad when I hear about a kid in the hospital who is alone. I just couldnt do this alone. Its hard enough just to be sick, but to go through this alone would be unbearable to me.

To my family, I love you with my whole heart! Thank you so much for the love and the laughter and those crazy random instances where you just showed up and made me smile! I couldnt ask for more because I cant imagine any other group of people being more loving or more supportive or more dedicated than you have been.

Because of my family, I will always know that LOVE is the currency that reigns supreme in life. Sure, money is nice, but you cant buy love, man.

Love,

Phoebe