Long overdue blog

I've been out of it this last week. I guess I underestimated the extent of my exhaustion. I finally finished writing this blog. A major thing happened this week - on Monday.

I WAS LISTED FOR A DOUBLE LUNG TRANSPLANT!!!!!!!

It happened. FINALLY. I'm so overjoyed and excited. Of course I'm nervous too, but I'm not going to let my nerves take root in my head.

I have been having a good time catching up with all my nurses here at DCH. I could not ask for better nurses. I'm feeling a bit nostalgic, because soon I won't be able to see these people who have been a part of my life for the last 15 years. I'm so grateful for all of the great times I have had here at DCH, and even the bad ones. I have formed some very strong bonds with these people. They are my family! I'm so lucky to have them in my life. :)  I LOVE YOU GUYS!!

Okay, so just in case you're wondering... I've been one sensitive cry baby this week. Of course I do a lot of it in private. I'm just a little overwhelmed by how thrilled I am, and how relieved I am that I'm through the worst of it. I don't think the actual transplant will be as unpleasant as all the crap I've had to do in the last year.
  
So here is the long overdue blog. I hope you enjoy it. Gives you a little window into the current state of my soul. ;)

I read somewhere that we gain a lot of our life experience through pain, whether it’s physical or mental. As a CF patient I can totally agree, but as a pre-transplant patient – good grief it’s my life! This has not been an easy road to take, and I guess I can kind of see why some cf patients would opt not to go this route. It’s scary, and it most certainly can be painful (physically and mentally). It was the scariest decision I’ve ever made in my life, while simultaneously being the best one.

I’ve always been pretty self aware, and in touch with my body which really aided me throughout my life. But going through this process was like going through a crash course on self awareness and spirituality. Transplant plowed through all my fears, and boundaries. I found out I can do anything, literally, and one day I really understood that this surgery is not only going to SAVE my life, but it’s going to GIVE me a life that I thought I could never have. Someone is going to save my life without even knowing me, in spite of losing a loved one. It’s interesting because this last year has been one huge awakening for me. I learned that the relationships we have with people, the connections, and all the love is what really matters in this life. One of the most intimate relationships I’ll ever have is going to be with a person I don’t even know, or at least part of a person I don’t even know. It’s so remarkable that through someone’s death another person can live. I feel so lucky to know firsthand how utterly amazing it is. This whole process has been so deeply intense, and has opened my eyes to a very different and beautiful world. I’m seeing some amazing things these days. 

The thing I really want to focus on, because it’s the most meaningful to me, is the profound beauty that has come into my life because of transplant. The decision I made is by far the best decision I’ve ever made, and I’m so thankful for everything I have gone through. Some of it was really shitty (excuse me) but through all of this I’ve just become stronger. I’ve learned so much about myself in the last year, but I think I’m also more whole as a person. All the ups and downs have humbled me beyond belief. I can only look back on this last year with reverence. I believe that things happen for a reason, and they happen when they’re supposed to – when we’re able to experience them.

When I was little I used to have dreams that I was running through a park or a field, breathing deeply and not coughing. I remember the sadness and ache in my heart when I woke up because I thought I’d never get to experience that. I never thought I’d be able to breathe deeply anywhere but in my dreams. Funny how things work out in life, the thing I wished for most as a child was to be able to live a long life full of deep breaths. I just didn’t know it would work out, and that I’d have to get a lung transplant to make it happen.

Here I am a year after making my decision to get a transplant, listed, waiting for new lung so I can run and breathe in real life. 

I also want to thank EVERYONE who has prayed for me, thought good things for me, encouraged me, done anything nice for me etc. It's your love and care that helped me get through the last year. Without all the love in my life I'd be lost. So thank you! Know that even if I didn't reply I sent you good thoughts too.

Cheers to LOVE & LIFE!

Phee

Been a little too long

I've said it before and I'll say it again... I am a horrible blogger. The 30 day thing was way too much when I came home. I didn't anticipate not being able to blog. I think it's referred to as writers block? Ha! Just kidding I know all about that. I bet you didn't know that I took a creative writing class in high school. ;)
I'm not going to apologize for not keeping up with my blog, the only thing I can really do is write a blog worth the wait. So, following this post will be a new blog. This one is just to update you a little bit.

A couple weeks ago I went to Seattle for my UW appointment. My Dr told me that the Echo I had done looked good, and they felt really good about listing me. They still had to have a committee meeting and make sure everyone was on the same page, and get some labs from me. I had some paperwork to send to them this week, and I have to do another blood test, but I'm almost there. I'm starting to get a little nervous, I can't believe this is actually happening. Even though for the last year I've been planning my life post transplant, I'm having a hard time imagining getting the call and waking up with new lungs.

I'm going into the hospital on Monday for a week - 10 days. We'll see what happens, I'm starting to feel a little shabby. Picc line is still working perfectly (knock on wood) so I'm very thankful for that. I'm used to it now, and actually really like it. Taking a shower is a little bit of a pain, but I find it actually makes my life easier. I take things slower, so I don't get as wiped out by getting ready. Excited to go in and have some nice relaxation time, some blogging time, and some me time. :)

I promise you all that I have a fantastic entry that is just waiting for some attention and editing. I'll probably post it on Monday or Tuesday. Followed by many other entries! Blogging is heaven sent while in the hospital. Honestly, the internet is amazing!

Running errands for the hospital today, so I will catch you up on Monday or Tuesday. Can't wait!!!

L

Phee

3 days...AND an update

 I have so many things I want to blog about, but I find myself unable to post anything my first week out of the hospital. I think I might have finally caught up on my sleep. My picc line stopped being such a hassle for me when trying to fall asleep, and I'm starting to find my independence when getting ready for the day. My arm has been really stiff, but it's finally starting to release a little. It's not that swollen anymore, and it's not tender anymore! YAY! The last person to change the dressing did a horrible job, after just 3 days it's starting to get crazy.
I'm home!!!! After my hospital hangover truly goes away, I will be able to update you on all the happenings of my life. My life is far less interesting out of the hospital. You'd think it was the opposite way, but it's not. I came home expecting my Jena to be gone, but didn't really understand what that meant until I saw all of her things gone. :( I MISS YOU JENA!!! I'm a sad little Phee without my JBear.
So here are the last 3 days I've missed, I'll try and be better about this. I have 10 days left!!!



 Day 18 – Something you crave a lot.

 Lindor dark chocolate w/ Raspberry deliciousness in the center. Mmmmm good!!

Day 19 – Another picture of yourself.

 This is a picture I took of myself 2 summers ago. I desperately miss the sun.

Day 20 – A picture of you last year and how you’ve changed since then.

Just for the record, my entire blog documents the changes in my life during the last year. To renew my own knowingness of them I am going to write it out now.


A year ago I had just come into contact with the scary prospect of transplant. I knew my condition was worsening, and would continue until my ultimate demise. Obviously I wanted to avoid that, so transplant was my only option. I thought about it constantly for a week, and I learned everything I could possibly learn. I had been against it for years, so it took awhile for my doctors to REALLY understand that I was serious about it. I've done a lot of changing since Morgan came into my life. Now, I would never want to leave him, not even in death. So, I had to grapple with that when I was thinking about transplant. I had to come to terms with the possibilities if I got a transplant, or if I didn't. But, death would be guaranteed if I didn't get a transplant.
I did the transplant workup in April/May, and I've been trying to get on the list ever since. Obviously I've had some complications in that arena. After a failed surgery, and a successful surgery I'm finally ready to be listed. Through all the (excuse me) shit I've been through in the last year, I can comfortably say that I'm not sure I knew who I was before I made this decision. My attitude about life has changed in some interesting and drastic ways. Where I was living for the present before, I am now living for the future. Even though I was very interested in my future, it wasn't EVERYTHING. Day to day was my life, experience to experience. But it's so much more now! My life is so incredibly full. I have love and hope surrounding me wherever I go, no matter the state I'm in. There is something weird that happens to you when you know that being sick isn't ALL there is in life. Now, I'm living with the knowledge that I won't always feel like a massive pile of sick that just got flattened by a semi. Life is much happier now, but at the same time it's not. Like anything great and fulfilling in life, you really have to work hard for transplant. It will consume you if you don't balance it all out.

But, WOW, I've changed so much since I became a wife. My life revolves around Morgan, in a very strange way that you would only understand if you were married. I'm so incredibly happy to be with him every day, and even though everyday isn't a fairytale by any means, we have so much fun together, and our life together is so full of love. I am so thankful and blessed to have him in my life as my husband and my best friend!


You know, after sitting here for awhile, I just now realized that there isn't one way my life hasn't changed in the last year. Even my style and hair is different. The ripple effects of deciding to get a transplant is so interesting to look at from where I'm standing now. I am so close to it that I can taste it!
The life and future I've been dreaming of is just over the next hurdle.


I CAN'T FREAKING BELIEVE IT!!!!




I'm going to a Jokers & Jacks show tonight. (The band my hubby plays in) It will be the first good venue I've been too. I can't wait to see all the new stuff they've been working on. Even as a wife there's very little musically speaking, that I'm privy too.


Also, I told you I would post a picture of my new haircut....

I guess this kind of was an update in the end, at least transplant wise. You might of noted the fact that I'm not listed yet. UW wants me to do an Echo to get find out the new state of my heart. I'm doing that tomorrow. I have an appointment in Seattle later this month, so I'm pretty sure that I will get listed this month. Which is interesting because it's exactly a year since we started this whole adventure. I'm thinking next year this time, let's go for having been transplanted! Yeeeeaaahhh!

I hope this blog finds you all well and happy. 

Cheers to love, happiness, and the endless possibilities that the future holds.

Phee

M.I.A??

I'm playing catch with my days this post.
I don't have a long update for you right now, but I will tell you a couple things.

1. I'm home from the hospital. I did great on my lung function test. A+

2. Finally get to satisfy my home cooked meals craving.

3. Sleeping in a bed with a picc line and another person is a lot harder than I thought.

4. The first week is always the hardest. It's like having a hospital hang over. I'm still playing sleep catch up, and yes naps are included in that equation.

5. I got a hair cut!!!! And it is soo cute. (Will post pictures soon!)

6. My puppies are AMAZING!! I missed them, and they missed me. :) Living in perfect harmony once again. 


Day 15: Something you don’t leave the house without.
My inhaler, my phone, and some pills to get me through anything. Pain, indigestion, and enzymes for eating.



Day 16: Your celebrity crush.
CHRIS PINE!!! Star Trek is one of my top 6 favorite movies. I could watch it over and over again. And it's not just for the awesome special effects, and witty dialogue... Funny enough I was looking at pictures of Chris Pine, and a saw a little bit of Morgan there. Brown hair, thick brows, lush eyelashes with dreamy eyes, and hello....Sexy man scruff! Not to mention star quality. :) Morgan is my Chris Pine. I'm sooo happy.

Day 17: A photo of you and your family.

This isn't the entire crew, but most of us are here. This was at my wedding. I'm such a lucky girl! I have a very large and caring family. :)


I will update you more later.... I'm so tired and I have to go to bed.

Love,

Phee