I GOT THE CALL!!!!

I really don't know too much more..... but yeah!!!!! The surgeon called at around 9:30 and Seth answered the phone. I said I didn't want to talk (because I was still asleep) but Seth handed me the phone anyway.

It was the surgeon saying they accepted the lungs, and to get down to the hospital as soon as possible. I took a shower, and tried to throw together anything I might need. Right now I'm sitting anxiously in a room. I had an EKG and X-Ray, but no one has come in to tell me anything else.

On the drive over we saw so many rainbows. I know it may sound cheesy, but it was amazing. I think it was God reminding me that no matter what happens every thing will be okay.

Seth will try to keep the blog updated as much as possible. Okay blood draw time.....

Transplant Clinic

Today I went to my very first transplant clinic appointment (besides the evaluation one.)

It was a pretty long day, we were there from 2:30 to 6:00 pm. It went well. I didn't do PFT's and am glad about that. That test is just exhausting nowadays, and of course the numbers are always poor. It's kind of nice to not have to check them anymore (for now anyway.)

I got to ask some questions that I have been wondering about. Such as:

At what age do they stop accepting lungs from donors?

Do they do transplants on Christmas?

What's my place on the list?

I'm sure I asked more, but those are all of the ones I can remember now. In case you want to know the answers too:

They accept lungs from people up to 55 years old. When they use them from someone in their fifties they cat scan them to make sure they are healthy enough. They even accept smoker's lungs. (I'm praying I get a young athelete's lungs!)

They do do transplants on Christmas day. I don't know why that surprised me - but it did.

My place on the list is still #2. I was hoping to be number one, but oh well. I think I could still be called even though I am #2. They told me that my size might be delaying it. I am very petite, and although my lung cavity is larger than most, I am still smaller than your average joe.

The doctor compared it to shoe shopping, which I thought was hilarious.

We also got to touch on subjects like my LAS score has now been raised to 40, fundraising, and possible anxiety medication. I also got my blood retested and they are checking for C diff again. They also want me exercising more, and are giving me a concentrator that delivers more oxygen so I can get in more cardio.

Overall I think it went well. I guess a lot of people get antsy like I am while waiting on the TX list. I want the wait to be over, and to go onto the next steps! Well that about sums it up.

Kind of a boring post, but ya know, whateves.....

Joyful Thanksgiving!

Happy Thanksgiving!!! I have so much to be thankful for! Thank you Lord for the many, many blessings You have given- and for life itself!!

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Levi made this scarecrow to scare away the birds from eating our tomato plants. So cute!

Weighed Down

Today I'm tired, and weary... and sad.

I am struggling. Things are getting harder for me. Today I laid in bed till noon. Yesterday I didn't stand until one o'clock. Mornings are rough times for me, as are shower times. I'm not lazy. I promise. I have to remind myself of that daily. Logically I know I am not lazy, but my brain doesn't let me rest, and a part of it is telling me that I am.

I'm sad because so many sacrifices are daily having to be made to keep me well. Big sacrifices, by lots of people. It stinks. Big, fun plans have to be canceled because of germs, or even the fear of germs. I know that I am truly near the end of my life, and one flu or cold at this point would do me in. I am living in fear- and I HATE that. It is so not me! It is not how I would normally be, if I wasn't being forced into it.

But I have to. Because I'm a fighter too. I'm fighting for my life, tooth and nail, so everything else is on the back burner... even my personality.

I am watching from the sidelines right now... and waiting for my turn to play again. Literally.

Crying has practically become a daily occurrence. I cry for different reasons. I cry because I am in pain. I cry because I am sad. I cry because I'm scared. I cry for other people's struggles. This life is intense!!

My mind is in turmoil. It is really being affected by my physical health. It is freaking out on me because I can't escape the very weak body that I am stuck in. To crawl out of my skin sounds so nice. To be able to take a day off. I would love that. To be able to walk with no oxygen, to have freedom, independence, and energy back! .... Even for a day.

Please pray these verses for me, this is what I am praying for myself.....

Psalm 55:22 (NIV) Cast your cares on the lord and he will sustain you; He will never let the righteous fall.

1 Peter 5: 7 (NIV) cCast your cares on the lord because he cares for you.

Matthew 11: 28 to 29 (NIV) Come unto me all who are weary and heavy burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble of heart, and you will find rest for your souls.

I really need rest.

Content

Clinic today. Lungs at 20% lung capacity. Yep, i think it's about time for that transplant... Haha!

Normally after hearing my ever-falling PFT results, I am royally bummed. I try not to ride the emotional roller coaster that comes from hearing that little FEV #, but I always do.

But today was the first time in years that I had PFT's and wasn't totally distraught about the numbers....

(even though they are worse than ever)

I'm just looking forward to new lungs!!!!!!

28 days......

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28 days. That's how long I've been waiting for a double lung transplant. Sometimes I can't wait to get the call, sometimes I dread it.

We should do a contest and guess when it is going to come. I'll go first. ummmm.....

I guess I'll get it the day after Thanksgiving.

Okay, it's your turn. Leave a comment and guess how long the wait will be. I'll try to think of a prize for the winner.

#2

Today I called the transplant clinic and asked the update of what order I am on the list. My UNOS allocation score is 38, and I found out there is only one person ahead of me in my blood type/category!!! Oh my goodness! It could be happening very, very soon! I was getting a bit antsy, knowing that time is not on my side right now. I am glad I called, and I can't believe there is only one person before me.

LISTED

I am now actively listed on the transplant list. My lung score is pretty high, which places me at the top of the list. Also my blood type is a common one that actually gets the most donors. The nurse at Stanford told me today that her gut feeling is that I will get lungs very fast.

So as of this morning we just wait to get "the call." I could be called any moment of the day or night to come down and get prepped for surgery. We have to be able to drop everything at a moments notice and always be reachable by phone.

Waiting for the call means waiting for someone to die. Please keep the donor's salvation in your prayers along with their family and friends. Please start praying ahead of time for peace for the people who lost a loved one.

Please keep us in your prayers too. It is a crazy roller coaster ride of emotions right now.

Amazing Summer

I haven't been very good about keeping my blog updated. The beginning of this past summer was amazing and fun. Here are a few photos of this summer's activities I didn't write about.....

New Adventure...

Transplant.

This morning I awoke to a phone call from the transplant nurse coordinator up at Stanford. She told me that they had reviewed my evaluation case and that they have accepted me as a good candidate for a double lung transplant. That is good news! So I am not officially listed yet.... I still have a few loose ends to tie up on my end. Once everything is in I could be listed as early as next week. Once I am listed we just wait for "the call."

These past two months of my life have been the hardest I have known. Looking ahead it doesn't look to be any easier. I think things will get worse before they get better. In the meantime all of the transplant evaluation has been a lot. It's been a lot of work, a lot of stress, a lot of pain, and a lot to wrap my mind around. It has gone pretty fast and smooth for the most part.... but I have a new understanding and respect for people who have been through a double lung transplant. It is not a walk in the park.

My head has been swimming lately with so many thoughts, the risks and details surrounding transplant. It can be very overwhelming at times. There is a lot of "unknown" involved with lung transplants. Nothing is guaranteed. I just pray that God guides and directs us to stay in His will. I cling to His word, to the promise of everlasting life... to being alive with Him for eternity. God does not promise to make my life here on earth easy, but all I can do is trust what the Bible says to be truth.

I pray for my family. This is not just a hard time for me, but the people I am close to. I see the stress in my families faces. Levi is concerned too and keeps asking about when they "cut me." Please pray for us. Please pray that the Lord gives us peace that passes understanding.

I know God may choose to use this upcoming surgery to bring amazing changes to our lives. It is exciting and yet still incredibly scary. There are moments when I can't wait to be able to run up a flight of stairs! There are moments I dread waking up on a vent in ICU ....

I am hoping to have Seth or my Dad update this blog when I am not able to. So stay tuned as we embark on this new adventure.