Day 14 / little update

Day 14: A tv show you are currently addicted to.

I picked SKINS for this one. If you would have asked me several months ago, I would have said Doctor Who. I will ALWAYS love and be obsessed with the friendly alien doctor, who travels through space and time in a deceiving large blue police box. But as I've seen all the episodes to date, there's nothing new for me to obsess on. Ask me this again in a couple months, and I will say Doctor Who, as the new season premieres sometime soon this year. :D YES, I do realize I'm talking way more about Doctor Who than I am about SKINS.
SKINS: British TV show about teenagers who are for the most part not parented. Some of them do drugs, most of them have sex, but the whole show is a blast to watch. I'm 21, so I'm definitely not impressionable like I would have been say 6 or 7 years ago. I mean, I'm MARRIED people, to a rock god none the less. (thankfully he's not one that does drugs!) So anyways, I have a weakness for teen dramas that involve all of the above, and lots of angst. I first saw it on the Netflix play instantly, and when I started watching it last summer I just couldn't get enough. I'm so happy series 3 popped onto the play instantly list. I'm currently getting series 4 via snail mail. Not fast enough! Anyways, I LOVE IT! And if you have any interest in British tv, and teenagers full of angst, you should put in on your queue.

Skins 1 & 2

Skins 3 & 4

I love this show! Highly recommend it!!



On a completely different note......
I have lung function tests tomorrow, so I could be going home soon!!! YEEEEEAAAAAAHHHHH!
I'm so full of energy, I feel so great, and I just want to go home already. I'm ready!!!! (in the words of Spongebob Squarepants)




Ode to Doctor Who (Abby who is my fellow Doctor Who lover)

 

Love, love, and more sonic love,

Phee

Day 13

Day 13: Your favorite musician and why.

I'd think this one is very obvious if you know me at all.

Musician: Morgan May

Why: He is a very talented song writer! I have witnessed his song writing process, and I know for sure that he never sends a song out that he doesn't think is perfect. He writes with all his heart, and really lays it out for the world to see. He is brave. I am also married to him, so I am bound to listen to some of his music, and what I've heard is music I could listen to all the time. As a person....Well I know this man like I know myself. He has fantastic character! He has a kind of sense of humor that is really rare these days. He is an honest and very loving man. All those things are so admirable in someone who is, someday soon, going to be a well known artist. Because of those things, when I read what day 13 was, I didn't have to think about it. I instantly knew who I was going to put down. And, WOW, I love this musician more than I can even say!!

Oh yeah........Plus, he's a super badass!!!!

 

P.s. Go to jokersandjacks.com to listen to their awesome music, look at pictures, find out where they are playing next, etc.

I loved posting  Day 13!

Xo,

Phee

Day 11/Day 12

Day 11: What's in your makeup bag??
I'd tell you, but I think it's something you have to see to believe. Without intentionally do it, I managed to have ONLY M.A.C. makeup. Well, aside from one Dior eyeliner pencil, and a couple of the brushes I use. I have more eyeshadows than I know what to do with, but I suppose there's one for every mood. :) My makeup is divided into 2 bags; One for face powder and cheeky powders, and one for eye makeup and lip stuff. I only use MAC Cremesheen glass because it's not sticky!! I hate wearing a gloss that's like fly paper, when I discovered the Cremesheen I never turned back. In addition to that, I have never used an entire tube of lip gloss until I found it. It's incredible stuff!!!
Actually, I don't know if you knew this about me, but I am in LOVE with makeup. It's my thing!
This isn't all of it, but it's what I brought with me to the hospital.

Day 12: A photo of the city you live in.

I live in Portland. I moved here when I was 5 years old. Mom packed up our BMW in 1995 and we moved into a tiny duplex in SE Portland near the Aladdin theater. We've moved 3 times in Portland, and are most likely moving for a 4th time this spring or summer. :)

Portland is and will always be my home.

Little update: My headache was completely gone all day! And for once since the surgery my wounds hurt more than my head. Crazy business! I was so relieved and happy all day. I am full of energy, I feel so good, and I don't feel swollen. It's a freaking miracle. All day I've been talking about transplant business, but I don't think I've realized yet just how close it all really is. I am so jazzed!!
My mind is racing tonight. I am having all these ideas, some big, some small but I'm having to write them all down because I just can't keep up.
I'm feeling really good, and I'm hoping to go home either Tuesday or Wednesday. I have PFT's early this week, and I'm hoping to kick ass!!!! :)

Love love,
Phee

I'm back!

Hello everyone!!!

Well I'm back to blogging. I hope you enjoyed my moms blog, I know I did. She's just the sweetest little momma ever.
So the surgery happened! It all went well, and I am alive and happy. I should be listed soon. I'm not entirely sure how that's going to work out. BUT, I am so extremely relieved that this is over and done with. On to transplant!!!
Post surgery I'm having a little bit of a rough time. The blood flow in my body has changed drastically, and I guess sometimes that can give you headaches, which I currently have. I was also having some post surgery fevers for the first couple days of recovery. I'm better now, although I'm still experiencing some headaches, they are not as bad as before.
It's so weird that I don't have a port anymore!

On another note.... I am SO THANKFUL for all of the support and love that was given. It really does make a difference in my healing process. All of you are amazing and deserve some sort of award, but all I can give you is heartfelt thanks and love in return. :) Please know that it means the world to me knowing I have people behind me rooting me on. This journey towards transplant has been life changing in so many ways. Mom and I were talking about it earlier, joking around, and I said that we had "won the battle but not the war".
She replied with "We've won many battles, and we're going to win the war". She is so RIGHT! I have every intention on following through with everything I've talked about. It's all going to happen. Your support is a big part of that. Like every sports team in America, I too need cheerleaders to motivate me to win the game. Just know your love is felt, and it's appreciated sooo much.

I have PFT's some time early next week. My picc line is working, but my arm is a little swollen and pretty tender. There's some insertion bruising. Ew! I'm trying to be nice and communicate with my arm, so my picc stays in.

So I'm like 4 days behind on my 30 day thing. It's kind of ridiculous. I'm going to post 2 right now, and 2 later today when normal people are awake and roaming around. Morgan will be busy all day tomorrow, so I will be by myself/with my mom/or with my sister in law (who is also my new best friend)




Day 9: A photo of the item you last purchased.


Honestly this is the last thing I remember that I have a photo of.

Delicious!!!!!


Day 10: A photo of your favorite place to eat.

That's tough. I have several places that I frequent but none are really my hands down favorite.
I go to Pastini Pasteria a lot. I also go to Outback I love to go to Mio Sushi, but I don't go there enough. I guess the favorite I have that I don't go to often enough is Stanfords. I absolutely adore it!!

Okay there you go. Updates galore! I have to go to bed. I'm sleep deprived, but it's so hard for me to sleep these days. With the headaches, and getting used to my picc line it's a freaking disaster.

Love and more love to all of you!

Phee

fill in the blank friday / blog mojo

 

 

 

1.   I am currently obsessed with ..  Heat packs for my picc line, card games, my pink camelbak (picture below), spending time with my mom and Morgan.

2.  Today I am feeling pretty subdued. I'm feeling the itch to go home, but I honestly feel pretty crappy because of these headaches. 

3.  The age I am is 21 - Went to one seedy bar and , had a drink at Mcmenamins. My outings as a 21er are not impressive at all!!

4.  My favorite place is home. target. michaels. and borders.

5.  Something I have been procrastinating is working some magic on my picc arm. And posting on my blog.

6.  The last thing I purchased was Starbucks. Strawberry Blueberry yogurt, and a chocolate milk. :)

7.  The thing I love most about my home is the people, the puppies, and the family room. I love that I can hang out in any room and no one cares. I like to spread out with all of my stuff.  

 

 

A real update is coming shortly. I wanted to have pictures edited for your viewing pleasure. I haven't done a fill in the blank friday in a while though, so I figured this would be a good beginner. 

Stay tuned! Check back in an hour or so, if you're still up. I am a total night owl, I stay up late...

love,

Phee

Day 8 - Truly Amazing Day!

Day 8 - A song to match your mood
Phoebe's choice was:  "Eye of the Tiger"


Hello! This is Amy, Phoebe's momma.  I know Phoebe had wanted me to post updates during the surgery, but I couldn't take my attention away from waiting...in a waiting room full of family who were also waiting.  Wait seems to be the order of the day.  Luckily, we didn't have to wait as long as we thought.  Why were we expecting the longish wait time?  You should have heard one of her surgeons during a consult...  

In prior consultations with Phoebe's surgeons they had discussed her upcoming surgery as a "rock fight from the start",  "I can't tell you how successful we are going to be", "I wish I could give you some odds, but we really just won't know anything until we are there", as well as "we booked a long time for this surgery".  We weren't bowled over by their confidence, but we knew that they were the "prepare for the worst and hope for the best" types.  For the last few months I haven't been able to get my attention off of the upcoming surgery and how significant an event it would be.  What a crescendo of anticipation!  This would be a death sentence or an opportunity at a new life with new lungs (to be listed for a double lung transplant).

There has always been one thing I could count on, no matter what, and that is Phoebe.  She has this will that forces the universe to simply obey.  She has overcome the odds so many times she would have outlived a cat times twenty.  She is the strongest willed person I know. Examples:  Day before yesterday she said that she would enjoy some fresh cut flowers in her room.  That night her cousin Jena came to visit with an elaborate bouquet of exotic blooms.  Today during surgery a lovely bouquet of pink tulips arrived from a dear family friend wishing her luck! Now, I realize these aren't dramatic life changing events.  We've had those too, such as the time the docs were hugging me because they thought Phoebe was going to bleed to death from a burst blood vessel in her lung and her only chance of survival was to stop the bleeding on her own, or the time she told me that what she wanted to do about her extremely rare bacterial infection was to get rid of it and give her docs the finger for giving a less than optimistic prognosis of 6-12 months (NAILED IT!).  I could go on, but this girl has been living against all odds from the very start.  I'm surprised she hasn't cured herself of CF, but maybe she still has a few aces up her sleeve.

Today was the biggest challenge yet.  Not only did a brittle and tired old catheter/port have to be removed without breaking apart and dispersing into her bloodstream, there was a huge clot and a completely occluded and damaged SVC that needed to be repaired and then stented.  Neither of these two things were easy fixes. There were potential pitfalls and worse case scenario possibilities galore.  

It took a few hours and then casual as can be, the surgeon steps out of the OR to let us know that "Phoebe is doing well.  The surgery was a success." and that he's "really glad it all worked out, it was really cool."  I was stunned.  I asked him what the down-side was.  He said "Nothing...it's all good."  I asked him about being listed for transplant.  He said "We did everything they asked for."  Easy breezy, lemon squeezy.  And that's how our story ends.  Just the way Phoebe said it would end.  I'm wondering why I was worried in the first place.

Why worry?

I don't know about you, but I am a big Phoebe fan.  HUGE.

L,
Amy

P.S.
A sincere and heartfelt THANK YOU to Phoebe's surgeons, who may not know it, but they saved a life and many hearts today.  And lots of LOVE to EVERYBODY who was out there sending Phoebe prayers, positive thought, light, love, etc.! 

Day 7/ Update

Day 7 : Your dream wedding

Well I had my dream wedding last year. I love everything about our wedding. We had so much fun!!

 

We had our dream wedding on August 9th 2010.

Once I get all the pictures from our wedding I'll have to do a whole run through for you. Our wedding was so much fun. I've heard from a lot of people that it's the funnest wedding they've ever been too. :) We made an incredible play list and made Cd's for all of our guests. The whole thing was very memorable!

So, I'm guessing you want to know how the picc line placement went? Well...... It actually was okay. 

It did hurt, it was uncomfortable, and it has been sore all day since it was placed. BUT, Perfect placement, it works, and I am not getting swollen from using it! We are using the picc line over my port now, and it seems to be working out. :) 

Here are a few pictures my friend Abby took of me. 

My sweet little Abby brought me some yummy KFC for dinner. I am so lucky to have such a great friend. I love my Abby! <3

I'm having surgery at 12 pm! I'm a little nervous, but I am soooooooo 100% positive that it's going to happen this time. I want to be listed RIGHT NOW! So I'm going all out. 

Balls to the walls!!! 

My mom will be doing a guest blog tomorrow, and possibly Morgan if he decides he wants to. 

She will be giving updates on my surgery, and most likely do something silly. 

I hope all of you are doing well. Take some deep breaths for me. I'm on my way to healthy lungs!

Love, Peace, Breath, and Life!

-Phee

Day 6/To blog readers

Day 6: A photo of an animal you’d love to keep as a pet.

A baby Panda! They are just the cutest things in the world! 

I just want to take a little space on this post to say something to all of the people who are currently following my blog. :)

I am so thankful to all of you for sending me such wonderful communication. It's so good to hear from all of you, and I wish I had the energy to talk to all of you! I wish I could tel you all more personally about my upcoming surgery, my hospital stay, my life etc. But unfortunately I will have to explain everything on my blog so that EVERYONE can read it. I find it to be easiest when confronted with so many questions like "what's going on? what surgery? why?"

So stay tuned for my next post later tomorrow. I will explain everything again, for the last time until my surgery which is on the 22nd aka Tuesday at 12 pm. 

Just so you don't get confused, this is not my transplant surgery. This is a surgery which will correct something in my body, that's getting in the way of me being listed for transplant. Once the surgery is done and successful, Seattle will get the "She's alright now!" call, and they will list me on the national transplant list. I will be listed for a double lung transplant. It's amazing to me that I could be on the list by the end of the week.... I just now had that realization. How AMAZING!!!!!!!!!!

I'm going to attempt to go to sleep, but I feel a pressure in my chest indicating an esophageal spasm coming on. It's been hurting for hours now. Soooo NOT pleased with the resident on call tonight. 

Good night dear blog readers. I truly do love you, and value each one of you. Thank you for the good thoughts, and lovely comments. :) 

Loooove,

Phee 

(aka once upon a time as Panda Bear)

Day 5!

This is just my Day 5 a lot earlier than when I post my day 4. Hehe! Special treat, I'm on the ball tonight. :)

Day 5: A photo of yourself. 

I wish I had that hair still! I am thinking about growing it out again. It's already 3/4 of the way there. And to have that only slightly chubby head. What I would give!!! Now I'm a swollen cow with no neck. Ugh...Only till Tuesday!!! YES! The pain in my chest and neck is so uncomfortable now, I'm not sure if I'll be able to sleep much tonight.  But whatever.... This is my Day 5 picture. I hope you enjoy looking at 4 different Phee faces. :)

Goodnight!

Phee

Day 4/Update

Hello again!
My day 4 is late...... As I start to write this it 11:36 pm. I'm listening to Iron and Wine with my Beats on, while Morgan watches Californication on his laptop. My neck and right side of my chest is acting up quite a bit. I'm thinking from all of the fluid back up from my IV fluids. The clot makes it difficult for anything to run through normally.
I signed the surgery consent forms today. It's official, I'm all ready to wheel into the Cath lab on Tuesday to have my life changed. When the surgery is finished and everything goes as planned (AND IT WILL) the okay will be given to UW, and I'll get listed.
My surgery is 4 days away, and I find myself contemplating time and how fast it goes  by. So many are happening right now, and are being set into motion. This is the year for change!! I'm hesitant to let go of the old times, but I'm putting on a brave face towards the future. The future is so bright, there is so much to be excited about. This surgery will be the catalyst for all the changes in my life. I will be put on the list, and then I will get a transplant, and then who knows. There are so many things I want to do in life. I want ALL of it!!!
So, I'm excited for this surgery. I'm nervous, but in an anxious way. I want to get it over with. I'm not afraid of pain anymore. I'm not even sure the recovery could be worse then the last time I went in. (knock on wood) Although the post surgery body problems were all random and completely unexpected. I'm positive this time will be different. :) I'm ready to do this!!

Here is Day 4!! This took me awhile because I technically have 3 parents. So here they are, being admired and thanked by me, and probably embarrassed if they hate the pictures I picked.



My dad - Michael Mattera
He passed away when I was 18 months old. I only knew him for a short time, and I only have tiny slivers of memories with him. I've always thought that he's been around me since then though. I feel his love all the time, and I am loving him all the time.

 

My Momma - Amy Mattera

She is by far the BEST person I know. I love my mom more than anything. She is my soul mate, and my best friend. There are not enough good adjectives to describe her. I love her more than there are stars in the sky. ;) 

My Papa (aka Step Dad) - Shane Kenney

Shane has been in my life for 8 years. It took me a little while to warm up to him. When I finally did let my walls down, I discovered that he is one of the most caring and kind men I've ever met. I can't imagine our lives without him in the mix. This guy is just AWESOME! I love him so much.

I know I'm very late with this blog post. Whoops! Today was kind of busy with people coming in to talk to me. All this last minute coordination before the surgery and the picc placement on Monday. I'm hoping to have some fun this weekend before I am confined to recovering.

L,
Phee

Day 3/Update

Day 3: A picture of your first love.

This was a few days ago, so it's way more recent. :)

I've never cared about any guy as much as I care about Morgan. He is honestly the greatest guy I've ever known. We have a very honest, loving, and hilarious relationship. I feel so lucky to have him as my husband, at the same time I'm lucky because my husband is also my best friend.

4 years and counting!

update time

Decided it was best to get Picc line either tomorrow or Monday. I'm so nervous! I told them I need lots of Ativan. Haha! Don't under estimate the power of drugs for the Pre transplant train. I was simply traumatized by the PH test, and I don't think I could have gotten through it completely without the help of Ativan. ICKY!!!!!!!!!!!!!! Did I mention I was traumatized...?

Back on topic... Picc on Friday or Monday, lots of drugs, lots of lidocaine, and lots of soft plush pillows and blankies for after. I wouldn't mind getting a trophy as well, but I guess I'll just have to wait till I get my new lungs. I will add that flowers would suffice for now. ;) Surgery is on Tuesday the 22nd. I have a VERY good feeling about it. I'm starting to feel the effects of the clot more and more. My neck is so swollen from the buildup of IV fluid that doesn't have a big enough channel to pass through. My neck is killing me. I think later I will take a picture of my neck to show you how swollen it has gotten. They won't let me take painkillers, or even advil because of the surgery, so the only thing I can do is put heat on it. :(

Mom and Morgan are coming up for lunch today, and they are bringing groceries for me too. I could use some snacks that aren't chips or candy bars. I will update again later. I promised you pictures last night and they never arrived! Sorry. I fell asleep in my bed with all the lights on, and woke up at 3 only to realize I still wasn't hooked up to my feeds and hadn't taken my meds. 

I'm so excited to have something to post about. I love blogging, I really should get in the habit of doing it more often. 

L,

Phee

Day 2/Update

Day 2: Meaning behind your blog name.

Well, I'd think that my blogs meaning is pretty obvious from the title of it. BUT, just in case....
This blog is about my life, the loves of my life, and ultimately my life with Cystic Fibrosis.
There are no aspects of my life that aren't affected by my CF. I didn't want to name my blog "My life" or "The life of Phoebe", so I came up with Life, Love, and CF. Nothing special, and nothing funny, but it is what it is.

Update:

Still haven't seen the cardiologist, or the surgeon since I've been admitted. But it's only day 2 and I have 6 more days till the surgery. I am nervous, but I'm so committed to getting through this so I can get listed. I'm thinking that I need to do the picc line a couple days before the surgery. I think it will be better for my body to do that. I just have a feeling that doing it during the surgery would be way too much. I'm going to ask my cf doc to get me a picc consult tomorrow. I'm the kind of person who needs to know everything about what is going to be done.
Anyways, I'll update again tomorrow. Hopefully there will be more information for me to process.

L,
Phee

P.s. More posts tonight. I have pictures this time!!!

Day 1

I checked into the hospital yesterday. Today is my first official day in here! I thought it would be appropriate to also start my 30 days of Phee today. 

Consult with my cf doc this morning went really well. We are talking about placing my picc during the surgery. I think that it would be easier for all parties involved. Although my trooper of a body will be going through a lot during that time, I'm convinced that that's the best time to do it. The last thing I'll want to do post surgery is get peripheral IV's till the next day, when I'd get a picc placed. No day afters' for me.

 My gabapentin dose was increased because my lung pain started to come back. I can't wait to get new lungs that don't hurt. 

One super exciting thing my doctor said is that post surgery, UW will most likely list me as active on the list "IMMEDIATELY". That is, if every thing goes as it should. (Clot removed, stent placed, picc placed etc.)

My surgery is on the 22nd. 1 week away! So in addition to this being my first day in the hospital, it marks the countdown till my surgery, and being listed for a double lung transplant.

I feel like I am ready for the real waiting to begin, and that when I do finally get my new lungs I'll appreciate them more than anything in the world.

Day 1 - Introduce, recent picture of yourself, 15 interesting facts

I'm Phoebe (Phee) Mattera

1. I'm a total nerd. I mean X Files/Harry Potter nerd. My husband makes fun of me for it all the time. 

2. Apple juice is my addiction. I have at least 2 glasses a day.

3. Lawrys Lemon pepper is my favorite seasoning. I put it on almost everything.

4. Being in the hospital is comforting, and is like being at a second home. 

5.I have an obsession with things pink and sparkly.... :D

6. I wear sweats more than half the time these days. I get so uncomfortable after a few hours of wearing everyday clothes. 

7. I'm one of those people who actually LOVES gift cards as presents. One of my favorite things to do is shop, and having some money to go spend that I didn't have to work for is amazing. 

8. I love playing solitaire with real cards! I could play for hours. 

9. My 2 favorite comfort movies are: Little Women and Under the Tuscan sun

10. I have a weakness for chocolate/raspberry truffles....I have a bag of Lindor truffles in my closet. 

11. Post transplant I want to go to school to become a hairstylist and makeup artist

12. I love baking and cooking! I especially love cooking for my husband.

13. I don't like coffee at all!! However I love black tea, and in most cases it has more caffeine anyways. I need all the caffeine I can get. 

14. I'm more dedicated to getting new lungs than I've ever been to anything. Aside from my mom and husband because these lungs are for them too. :)

15. I'm very introspective, and it takes me awhile to update my blog sometimes because of that.

But I love updating, and I'm hoping this 30 day thing will get me more in the habit doing it.

Phew! 1st day down. I'm planning on doing a video tour of the amazing hospital room I scored! So I'll probably end up posting again later today. :)

L,

Phee

30 day

I'm starting this before I go in the hospital. On one hand I want to see if I get through the whole thing while I'm in the hospital, and on the other I just want to be posting all the time. Even if it's just something small like the daily facts in this survey. I got this from my cousin Jena over at C'est ma vie!
I go in on Monday the 14th....Yeah, I know. HAPPY VALENTINES DAY PHOEBE!! Hahaha!
I have a birthday update coming tomorrow or Sunday. 

Here are all 30 days listed.

Day 1 - Introduce, recent picture of yourself, 15 interesting facts
Day 2 - Meaning behind your blog name
Day 3 - A photo of your first love.
Day 4 - A photo of your parents.
Day 5 – A photo of yourself two years ago.
Day 6 – A photo of an animal you’d love to keep as a pet.
Day 7 – Your dream wedding.
Day 8 – A song to match your mood.
Day 9 – A photo of the item you last purchased.
Day 10 – A photo of our favorite place to eat.
Day 11 – What’s in your makeup bag?
Day 12 – A photograph of the town you live in.
Day 13 – Your favorite musician and why?
Day 14 – A TV show you’re currently addicted to.
Day 15 – Something you don’t leave the house without.
Day 16 – Your celebrity crush.
Day 17 – A photo of you and your family.
Day 18 – Something you crave a lot.
Day 19 – Another picture of yourself.
Day 20 – A picture of you last year and how you’ve changed since then.
Day 21 – A photo of something that makes you happy.
Day 22 – A letter to someone who has hurt you recently.
Day 23 – A picture of something you want to do before you die.
Day 24 – A photo of something that means a lot to you.
Day 25 – What’s in your purse?
Day 26 – A photo of somewhere you’ve been to.
Day 27 – A picture of the person who has gotten you through the most.
Day 28 – Your favorite movie.
Day 29 – Something you could never get tired of doing.
Day 30 – A photograph of yourself today + three good things that have happened in the past 30 days

Puppies!

As you know we got a new puppy at the end of November. Well, it's taken awhile but our puppies are finally acclimated. Fancy took a little long to get used to him because she's been the center of attention for 5 years. Recently they've started to play together, nap at the same time, and eat together. I'm proud to say that this week we've worked ourselves into a very lovely morning routine. My puppies make me so happy. So this post I'd like to dedicate to them. 

I took these pictures last week and thought they would be a fun addition to a puppy post. Here they are. 

The puppies are playing and having a fun time being friends. I'm so relieved they are getting to be friends!

Love, 

Phee

My 2011 update

Back again....
So here is the update.

They are NOT replacing my port anymore. Another one would be too complicated to place, and because I have a tendency to clot, they don't want to make any vessel compromised with a port catheter. Peripheral IVs won't work, I need something long lasting. So getting a Picc Line was the suggested option. (click on it to find out what it is) I was really upset about it for awhile, in fact I'm still kind of upset. Mostly because no one indicated that I might not be able to get my port replaced. That was always the plan and then overnight it was different. Plus, they've been telling me for the last decade that I would ALWAYS need a port, and that I had to make sure I took care of it so I'd have it for a long time. That  has serviced me well until now, and I'm at a loss. I've said it before and I will say it again now... I would do ANYTHING for this transplant. This is another instance where my dedication is tested, whether my doctors know it or not. Once again though I find myself having a smooth calm of resolve after processing the latest and greatest of this pre-transplant process. I've come to terms with the fact that my case is very unusual, and that there are things that need to be done. I want ALL of this to go perfectly and smooth, and I'm willing to put myself through a lot in order to do that. So if getting a picc line will insure that my post transplant is easier than I'm going to do it. I've come this far, I might as well go all out, right!? I have a clinic appointment with the surgeon on the 9th. He will be working with my cardiologist in the upcoming surgery. Which by the way is tentatively scheduled for the 22nd of February. I'll be going into the hospital like a week before so I can get a mini clean out and have my picc line placed (shudder)..... I'm thanking myself for postponing it. I'd be in the hospital healing from that surgery right now if I hadn't. BUT....and this bring me to my next subject. I didn't want to spend my 21st birthday (possibly) in the hospital, or at home with a new picc line. I'm sick, but I'm not sick ENOUGH to not celebrate my 21st birthday!
I am so loving the fact that in 1 week I will be 21! My birthday is on Monday the 7th. Finally I'll be able to go to my husbands over 21er shows, or hang out with my family when they go out. It's just really nice that when I turn 21 I can go out past 10 and actually be able to do something other than drive around. It's amazing!! Most of the time I don't really feel any different. But this year I can say with certainty that I am not the same Phoebe who turned 20 last year. I have grown and matured in ways that I hadn't really anticipated. When I was confronted with transplant I had to really analyze my life, and what I wanted for my future. I had to understand/accept some scary truths, and put myself out there in ways I never have. I pushed my limits farther than ever before. I learned that I can do anything, and I mean anything, if I have to. I realized late last February that I didn't have an option about transplant. When I listed in my notebook all the reasons I would want to stick around, it occurred to me that they weren't reasons at all, they were obligations. I wasn't about to bail! I wouldn't dream of it. So, I decided to get a transplant. You've most likely read that blog post though, and if you haven't here's the link. That decision I made a year ago has taken me on a long and crazy journey, this year seems extraordinarily longer than all the years prior. I'll be in the hospital roughly the same time I was in last year, funny how that works.


I have a long way to go still, but if this year is anything like last year, I know it will be epic. At this moment I am unaware of the changes that will take place within my life, but I am thankful for everything that has happened so far. I can't wait to see what happens next.