Coasting

Hi!
So yesterday I was at my friend's house and we were setting up a blog for her upcoming adventures as she moves to Antarctica.  I happened to come upon my blog, and realized how long it's been since I have written.

Things are going really well heath wise.  Last time I checked my PFTs were mid nineties - still on the incline.  95% if I remember correctly.  I workout at a pace of a normal, fit person.  I have been really enjoying long boarding this year.  Next I want to take up (or at least try) stand up paddle boarding in the sea.

So yeah, just a quick update to let you know I am alive and kickin.  My life is not perfect, but I am doing well and my lungs are too.  Next time I check back I hope to say that I blew a 100% PFT.

Oh and heads up - you are definitely going want to check my friends blog in say oh about a month.  She is an amazing writer and person.  It's : http://juliebuggs21.blogspot.com/

Rejection Free

Okay, some good news!  Last week I had another bronchoscopy. (3rd, 4th, 5th one?  Who knows.  I have lost track.)

There is no more rejection!  Praise God for His mercy!

They found some bacteria in my lungs and almost put me on antibiotics for it, but at the last second decided not to, which led to me doing a little happy jig.  They think it may be coming down from my sinuses (which are still CF sinuses)  so I need to schedule an ENT appointment.  Yep, I had better go do that . . .

A year ago . . .

"a year ago this week we all caught the swine flu ...Levi and I eventually got over it but Leah never really did - until she got new lungs..."


That was Seth's Facebook status last night.   It got me thinking.  Yep, it was around a year ago when my health started spiraling down to an unmanageable, scary level.  Until then I had lived a relatively normal life.  Yes, I had treatments to do.  Yes, I would have to be admitted to the hospital for "tune-ups".  Okay, so maybe my life wasn't completely normal.  It was normal to me though, and although I was hindered from certain things I had enough freedom and independence to get by.

That is until late last summer...

At the end of July we all got sick.  Very, very sick.  It was the sickest I have ever felt, and I pray to God I never feel like that again.  I was so weak.  Fevers daily.  Never ending, relentless fevers immune to any medication.  Nothing brought them down.  My lungs were bleeding for days on end.  They were gurgling and I tried to avoid the inevitable coughing so I wouldn't exasperate the situation and make it worse.  I could only lay on the couch.  I couldn't stand through a whole shower.  I ended up in the hospital.  Extremely anemic, I could barely make it to the bathroom.  To walk across the room felt like I had just ran a marathon.  Living was exhausting, but I didn't have a choice in the matter.  It felt like I had to do extreme exercise just to survive.  When I was an inpatient a doctor told me he thought it was time for me to get evaluated for transplant.  I was shocked.  As sick as I was,  I wasn't mentally ready to face the fact that I needed a transplant. Around this time I was placed on oxygen.  I had been on oxygen here and there before, but never NEEDED it.  As in, can't-breathe-without-it needing it.  One night my oxygen got pulled out of the wall and I woke up with a panic and suffocating feeling.  I pressed the nurses button.  They didn't come.  They never come.  That was the closest I have been to a panic attack.  Maybe it was a panic attack.  I don't know.  All I remember is that I couldn't breathe, and even later in the day when I could breathe finally I was still shaky from the intense fear I had experienced earlier that morning.

When I transitioned back home I was so, so, so sick.  The hospital didn't help make me well at all.  Just transitioning from hospital to home used up every ounce of energy I had within me and more.  I felt like I was going to die.  I got oxygen set up at home and I laid in bed for days.  I was losing weight at a scary pace, and no matter what I did I could not gain.  Eating was a chore and something I had to force myself to do to stay alive.  The number on the scale kept falling.  I was down to eighty pounds, and did not like what I saw in the mirror.  I looked like death.  People around me were not handling the situation very well.  Sometimes I felt confused why I was the one who was sick, but was handling it better than everyone else.  That may or may not be true, but that is how it felt.

I knew I didn't even have a year left to live, and that it was down to months.  I could feel it.  I wasn't sure that I would make it to Christmas.  It was such a dark time, but yet the comfort of God was so real to me.  I had true peace about "real life"  in eternity.  I didn't want to leave my family behind, and I was scared of the pain, but what happened after I died I was confident in.

This was all a year ago.  And so the wait for new lungs began.  The unknown was terrifying.  The pain was unbearable.  My normally clear head was a mess.  I felt lazy and depressed although I wasn't.  The Lord God revealed himself to me in the most amazing ways.  I learned lessons and things about myself, people and God that I wouldn't have otherwise.  I learned that God is in control and we have no control. I learned that God's goodness has nothing to do with our individual circumstances at the time.  I learned that God gives and takes away, but blessed be the name of the Lord.  I learned that I am very against positive thinking and thinking we can "will things to happen" by our own thoughts.  I have a strong disdain for the word of faith movement.  I learned that if God is for me, who can be against me and that I don't need to fear man or satan.  I learned that being a Christian to have an easier life is not the way to go, and that is not what Christianity is about.

I was blessed to watch this video a few days ago.  Everything this pastor says is a word-for-word into the inside of my brain and heart when I was suffering a year ago.  This is how I felt exactly, and God revealed though His word and spirit these same truths to me.  I am not nearly as articulate as he is in communicating God's peace through suffering.  Take the time to watch it, seriously.

*** Also, please keep this family in your prayers.  James 5:16 ***
You can keep up with what is going on with Daisy Love here at http://prayfordaisy.com/

Another Notch

Bronch number two is now under my belt.  It was this afternoon.

Today I came to the realization I have spent way too much time in the hospital just by how many hospital worker friends I know.  I ran into so many people.  It was ridiculous!  I guess it really is my home away from home.  Seeing people in the hall, asking then how their cats diabetes condition is . . . .  yeah.
My friend Sheba was there (the one who was giving updates to my family during TX surgery)  and another RT (*respiratory therapist) who I am friends with helped the doctor during the bronch.
That happened last time too. (I knew the RT)
I passed by like 10 people that I knew today just walking to my appointment . . . .

Anyways,  man - I am beat up!  I'm tired.  I'm coughing (yes, coughing).  I was tired after my last bronchoscopy, but definitely more tired this time.  I'm coughing up bits of blood.  That is normal for two days, or so they tell me, but it didn't happen last time.

So on that note that I am SOOO tired, I'll say goodnight.  Short and sweet.

(and results shouldn't be in for awhile . . . I don't get them instantly)

Rejection

Well even though everyone I'm close to already knows the results of my bronchoscopy, I am well aware I haven't written a blog about it.  We have been away at a cabin with family for a week, and the week before that was crazy busy.

As it turns out I have slight rejection.  There are two types of rejection.  Chronic and acute.  The latter being the better one to have, if you had to choose.  That is the one I am experiencing.  The acute rejection runs on a scale of one through four, one being the mildest and four being the most severe.  I have A1 rejection.  This is not news I wanted to hear, but even since the beginning of my so called transplant journey the doctors have let me know that rejection is most common in the three to six month window of time.  I am still within that window, and so the news wasn't entirely shocking.  Since I have the most mild form of rejection that there is, we are hoping that it resolves itself and I have no change in any type of treatment.  Just wait and see.  I have to have another bronch (yuck) soon to see if there is any change.  If rejection still shows up in my next biopsy, then the doctors will discuss a treatment plan with me.

I am feeling decent, which after all is the most important thing to me.  I am thankful for that.  Surprisingly I am not too stressed about having rejection.  I can be pretty tightly wound sometimes, but the fact that I have rejection has been floating around somewhere in the back of my mind - not the forefront.  During our camping trip I was able to relax and have a good time.  When I am feeling okay it is pretty easy to forget about any looming health issues.  It's only when I start feeling pain or being tired that I am reminded.  Like I said I am feeling decent so it hasn't been too bad.

All that being said, these hiccups with my health keep me a little more reliant on God than otherwise.  Sometimes they are a blessing in disguise.  God's goodness has nothing to do with our circumstances.  He is what He is.  Never changing.  My life shifts like the wind, but God is the one solid rock that always remains.

So much going on!  I have been busy with my matronly-of-honor duties.  I am throwing my sister a bridal shower.  It is in little over a week!  I'm having it at my house, and I couldn't be more excited.  Planning these things are all sorts of fun!  I ordered my dress for the wedding yesterday and it shipped today.  Eep!  Also Rebecca, Brittani and I got together and had lunch and talked about wedding/shower stuff.  I went to the party store after and got plates, napkins, cups etc.  It's going to be so cute - I can't wait!  The wedding itself is in a month (they had a super short engagement) and I know the time will continue to fly by!

Also yesterday I jogged/walked from all the way from my house to the beach in the rain.  I ended up at the lighthouse.  It was absolutely grand.  Why is it that I can jog so much further while I am listening to pop music?  Or any music for that matter.  It was refreshing. It was just drizzling not pouring, but there was no one out.  I felt as if I had the whole world to myself!  I was trying to dodge the hundreds of snails that all decided to cross the sidewalk as the sun was setting.  I was doing pretty well but as it was getting dark, I accidentally stepped on one!  As it's shell got crushed so did my heart... I felt so bad!  When I arrived home I told Levi to come outside to check out all of the snails.  As soon as he stepped out he crushed one too.  Sad.

Last Friday was clinic.  My PFT's were down by 7%.  From FEV1 83% to 76%.  Because of my recent RSV and hospitalization they want me to have a bronchoscopy.  Having RSV can trigger an immune response in the body, which can lead to rejection of the lungs.  If you remember, I don't want my body to have an immune response.  I take pills to suppress my immune system, so that my body doesn't recognize my lungs as foreign and try to kick them out.  So the bronchoscopy is scheduled to check for rejection.  I'm trying to not think about it too hard.  Worrying doesn't add one day to my life.  I am nervous about the procedure itself though.  It is tomorrow.  Pray for me -- if you remember me tomorrow.  I will be partially sedated, and need someone to drive me home.  My awesome mom is going to watch Levi and then drive me back.  In my experience partially sedated procedures are the worst kind!  I'd rather be all the way blacked out or totally alert.  A few hours after my transplant I had a bronchoscopy, and I remember the whole thing very clearly.  Usually, in the past, they give me medication to make me forget.  Isn't that a creepy thought?  Medication that makes you forget what they did to you?  Yep, that's what I usually get but I don't know why I remember that one bronch.  They forgot to give me the forgetting medicine.  Haha

I have a new hair colour!  Platinum blonde!  I love it!  This is the second time I have done platinum... it's a fun colour to be.

That's all for now!  ... until next time...

My Upper Endoscopy

So I think that I have kind of been avoiding posting a real post on here.  I have felt crummy lately.  I have also come to the realization that I don't like writing about the hard times as much as I enjoy writing about fun times.  Maybe because I like to be the bearer of good news, instead of sounding whiny.  Or maybe because I feel bad, I just don't feel like putting energy into anything.   That might be the case, because I have been avoiding work this week like the plague.

Monday I went to Stanford to have a procedure done.  A full GI work-up.  I randomly get really intense sharp pain (worse than childbirth).  It doesn't happen that often, but when it hits, it is crazy intense.  It started back last year before my transplant.  They didn't want to do the procedure back then because I would be sedated, and the doctors didn't feel like I was healthy enough at the time to go through that.  So it got put on the back burner.  New lungs came first -- it was more important.  Finally, now that my health is better I was able to get the procedure done and be scoped.

That is how I spent lovely Monday.  Sedated.  Seth had to take off of work because I wasn't allowed to drive myself home.  I thought it was funny also that the nurse dude ( I really don't know his title) told me to watch out and to not sign any important documents, haha.

It all went well.  I think.  I can't really remember.  Yeah,  it did.  I'm pretty sure.  Anyway,  they put a scope down in my belly to look around.  An upper endoscopy I believe it is called.  They found inflammation, but that is all as far as I know.  I have to schedule a follow up appointment to really find out the nitty-gritty.  Before I had the test done, the doctors all seemed to think I had gastritis.
They threaded a tube from a machine through my nose down into my stomach.  I had to leave it there for twenty-four hours.  Then I had to drive back up there to get it removed the next day.

After my dramatic dog Chiquita gets a bath, we wrap her up in a towel and place her on our couch.  She sits there shivering, and won't budge for literally hours upon hours.  Sometimes all night.  She hunkers herself there in self pity.  She can't believe what horror just happened to her and she remains frozen in dejection.

That was how I felt earlier this week.  Every time I ate, sat up, laid down I had to press a button on a machine that was threaded through my nose and throat.  I wasn't allowed to shower (and if you know me, you know how much that bothers me).  Needless to say, I wasn't running around the house happily cooking dinner and caring for my family.  I sat, like my chihuahua, frozen and not wanting to move.  Every time I chewed or swallowed I could feel the tube tugging up and down my nose and throat.  It was pretty gross, not to mention very uncomfortable.  I also didn't feel like blogging, I guess.  But now that the tube has been removed, I have regained my freedom, and I feel much more like myself, I am happy to share the gross, gory, details with you all.  Ha.

Besides being somewhat of a baby about the whole tube-in-my-nose-thing I still have my lingering cold.  Or should I say cough?  The cold is gone, but I am still coughing during the night.  It is getting better, but very slowly.  So yeah, it just hasn't been the best week health-wise compared to others.  That is when I feel like hiding out, and waiting for the storm to blow over.  And it is.

Bad News

The transplant nurse called me today with the results from yesterday's swab.  She confirmed that I have a virus.  ( I knew that already by how lousy I feel)  And then she dropped the bomb...

I need to be admitted.

I have one of the seven viruses that they test for!  Can you believe it?!?!  Ugh.  I have RSV (respiratory syncytial virus).  I remember hearing about that virus when Levi was a baby... it is common in little kids.

So this means I have to spend five to seven days in the hospital.  I am bummed, but more than that I am just scared of the unknown.  I have done the hospital thing before, but never as a transplant recipient.  I don't know how my body will react to these new medications.  I am hoping it will be relatively easy but I just don't know.

I was kind of taken aback and a little shocked by the news, especially since I have been feeling so well the last couple of months.  Weird how a little germ can just change all my plans.

Seth is going to take a few days off of work to stay home with Levi.  My parents might then take him over the weekend.  Right now I am just waiting to hear back from the hospital when they have a bed available for me.

Time crawls so much slower in the hospital, so if you feel so inclined leave me a comment or message.  It brightens up my day, and helps time to go by a little faster.  I would normally say to come visit, but when I googled RSV I learned that it is highly contagious.  I don't want to give anyone this cold...

Sick in the head

So yeah.

I caught the cold!  Boo hoo.  I have been sick for about three days now.  I don't feel horrible, just a normal run of the mill cold.  Levi had it much worse.  He had a fever, aches, coughing, runny nose, etc.  The whole nine yards and he was down for the count.  He just laid around, which if you know Levi you know how unusual that is.  He actually took naps... he barely took naps when he was a baby!  Seth is sick too.

So with newly transplanted lungs and colds you don't mess around.  I have to call the transplant clinic every time I get sick.  They then have me come up and get "swabbed."  So today I drove up to Stanford to have a very, very long little Q-tip inserted up my nose.

I need to take a little detour to tell you just how awful this little test is.  It sounds harmless, right?  Wrong.  Do you know how far back your sinuses go into your head?  They push that little Q-tip thing way back farther than you would ever think it could go.  They push it to the back of your head, or so it feels like it.  If you have had this done, you know exactly what I'm talking about.  If you haven't -- good for you.  You don't want it.

Apparently, according to my transplant doctor, there are about 300 cold viruses.  Seven of those 300 are potentially harmful to me.  They need to test to make sure I don't have one of the seven viruses that would cause me harm.  Better safe than sorry-- that's why they must test every time I get sick.  If I do end up having one of the seven I have to be admitted to the hospital for five days to be treated.  They give special breathing treatments and such.  Five days in the hospital is no biggie for me, but obviously I am hoping and praying that I don't ever have to do that.

The test results should be in tomorrow.

Health

You guys are just too amazing.

Thank you for all of the nice comments!  I feel the love.  I hope I am half as nice and gracious to people as you guys have been to me.  I read the comments you left, and then when I was falling asleep at night Seth re-read them to me out loud so I could be doubly blessed.  I have been so encouraged by each and every person who has taken the time to write me a little comment or note.  If  God can use a little, sinful, weakling like me it just shows how powerful He is.

Today has been a loooong day.  A good day, I can't complain, but long.  It was a clinic day.  Clinic days are always long days.  They consist of blood drawing, x - ray, PFTs, vitals and of course talking with the nurse and two doctors separately.  Not to mention the dreaded waiting room.  I think it should be more called the black hole or something.  You get lost there for hours upon hours, and I feel lucky to ever emerge.  I met a really nice guy named Mike today though.  We had good conversation, which helped the time to fly by faster. 

I have to start two new medications to help keep all my levels, well, level.  The doctors and I also discussed that I have MRSA in my sinuses, but they don't feel like it needs to be treated as I am asymtomatic.

The good news is I don't have to come back to clinic for a month!  *Sigh* Very nice.  I was very glad to hear that.  The less days spent at the hospital the better.  In other good news my FEV1 rose to 83%!  Up 6 percent from last time!  Love. It.

On the way out I stopped to visit my sister (who also has CF) who is admitted as an inpatient right now.  Please keep her in your prayers.  Being in the hospital is a hard, miserable time.  Even if you have been there many times before, it doesn't get much easier.

My laptop is at the shop getting healthy and fixed up again, I don't know how long it will be there.  I hate to update from this ancient desktop pc, heap of plastic.... and don't want to even attempt to upload photographs from this thing.  I'm trying to avoid going online as much as possible... 

Until next time...

Very, Very Good News

Good news!

Yep -- you guessed it!  We can move back home!  We don't have to live at the hometel anymore!
Clinic went very well.  I got to do PFTs and I blew an FEV1 of 77%!!!

To the average person 77% lung capacity might not sound that impressive, but for it being the very first time blowing after the transplant I couldn't be more thrilled with those results.  Prior to the transplant I was functioning (barely) at just 20% lung capacity.  Now that my lungs are not deteriorating my lung capacity will keep climbing, instead of dropping.  A very exciting prospect.  I'm looking forward to beating my score next time, as I get even more fit and my new lungs expand even more.  We are just thrilled.  God has been so gracious to me, to give me this reprieve of good health!

The rest of my appointment went excellent as well.  The doctor looked at my X - ray and he said that it was just perfect and that "It looks like you didn't even have a transplant."  I asked if the air trapping was gone and he said it was.

Here is a picture of my bones - for your viewing pleasure.  Haha.
When I got the transplant they literally had to saw my bone (the sternum) in half to fit the lungs in.  Then they stitched it back up with wire.  The wire stays forever.  If you look closely you can see the wires inside of me....

To top it all off they lowered my dose of Prednisone!  This is also very good news.  As I have said before the side affects from that drug are pretty miserable, so tapering down the dose is something I had been looking forward to.  I will hopefully be sleeping more soundly and losing these chubby cheeks that are caused by the prednisone.  My blood sugars have been a non - issue so far, and with the lowering of the steroids, that will continue to be the case thankfully.

I feel better than I have felt in years.  It is amazing to not cough or do treatments.  My energy level is the biggest difference I have noticed.  I get by on much less sleep, and go throughout the day without feeling tired ever.  I raced Levi running this week - and won.

Thankful doesn't even begin to describe how I feel - it is just pure felicity!  Praise the Lord Jesus.

Sayonara

Yes!   No more breathing treatments!   I never thought I would see a day come when I didn't have to hook up to these machines.  I have done breathing treatments daily since before I can even remember!  Last night Seth packed 'em up and moved 'em on out. Good riddance!
Trashing of all of my old medications has felt pretty marvelous.  While my body still has Cystic Fibrosis, my new lungs never will because they have different genes.

Do we even fully grasp yet what this means?
Hours and hours more per week of time.... !

Update and Progress

As Seth mentioned yesterday I had my weekly transplant follow up appointment. The frequency of my  clinic appointments will decrease over time, right now they are still once a week.  Everything is going well, as far as I know!  Very cool.  I got my sutures removed!  I was a little nervous about having to do that, after my last suture incident that was quite painful.  They came out easy and pain free though!  Very relieving.

My sleep has been so poor this week.  I was averaging about 3 hours a night (a side effect of prednisone)  I pretty much was going insane.  Thankfully, praise God, I slept a seven hour stretch last night.  It felt so great.  I think Seth is hoping I get more than seven hours a night though, as he is walking around in a daze.

Another awesome thing is that I got to end all of my antibiotics yesterday!  No more I.V.!  This is very exciting because now, as of yesterday,  I am completely free of every type of tube or anything.  Just back to skin and bones, for the first time in three weeks.  Ahhh... freedom!

One of my friends asked me yesterday if I was getting cabin fever.  I told her no and then went on about all of the things I had done that day.  Seth and I have been so busy.  Obviously I don't write every detail of everyday on here, but we are out and about constantly.  Probably we will be even more so now, since my I.V.s are done.  Also, I have been such a lucky girl to have been having just awesome friends come hang out this week and last week too.  Every day feels like a party -- haha.

This week my parents have dropped Levi off here twice, to hang out with us.  It's been really nice.  He likes the hometel.  The first thing he did when he saw it was run around to all of the light switches to figure out which switch turns on which lights.  After that, he looked around for secret passageways. Then after that he arranged the patio furniture so that him and I could take our drinks outside and drink together.  (He thinks that every time we drink anything we should sit on the patio)  So we sat on the patio and sipped our tea/juice box together.  I'm looking forward to all being together again at home.

Today we might head on down to Santa Cruz again and run errands.  Sometimes we don't really know why we still have to be up living here, but they have not given the go ahead to go home yet, so we just make day trips as needed.

That's it!  It feels wonderful to be making progress!  Pre - Transplant, I had to work very hard just to try and stay healthy, and kept declining anyways.  Being in a place now to actually have progress and improvement feels excellent.  I'm loving being busy and productive...

Two Weeks On

It's been two weeks now since I got the call! I can't believe how much has transpired in the last 14 days. I am continuing to recover well. Thank you so much for continuing to keep us in your prayers. Here are some more detailed prayer requests....

-Please pray that my lungs continue to stay clear. Clear of dust, mold, fungus, germs, viruses, bacteria, mucus and all the nasty stuff that could float in there and cause damage to my lungs. Please pray for wisdom for me to know in which situations I should or should not wear a respirator or a paper mask, or nothing at all.

-Please keep in prayer that my body would be able to regulate my temperature well. Although I don't think I have gotten any fevers, I keep getting extremely, uncomfortably hot and sweaty - especially at night. It's the middle of winter and I always want the sliding glass door open. Pray for Seth too.... that he doesn't freeze to death, haha.

- I'm still hooked up to I.V.s for the next couple of weeks. I am on very high doses of antibiotics to prevent the risk of infection. While I.V.s are something that I am used to, having CF and all, they are never fun. Please pray for patience as we finish this course up. Anyone who knows me, knows how much I like to shower everyday, and every time I am on home I.V.s I can only really get one good shower in a week (between needle changes) Please pray for me not to feel too yucky.

-Last week my vein on my left forearm got infiltrated, meaning it burst. It has been a very painful event for me. My arm is purple and bruised. I am not allowed to stop the I.V. therapy even though it continues to aggravate my veins, because of the importance of the antibiotics. I have been wrapping it daily in ACE bandages and using hot packs. Please pray that it will continue to heal properly. My fingers and wrist have seemed numb ever since it happened, and I get anxious that there is permanent damage. Please pray this is not the case.

- I am on so many brand new medications. I'm not sure how many ( I should really count them) somewhere around 15. With this comes new side effects. Prednisone is known to mess with your sleep, appetite, and your moods. Please pray that the side effects will be at a minimum and that I'll be able to sleep and won't get moody.

- Please pray for no rejection. At any moment my body could decide to just up and reject these new lungs. The human body recognizes transplanted organs as "foreign" and naturally wants to attack them. Hence all those new "anti-rejection" medications I am now on, and will be on for the rest of my life. Please pray that my body would accept the lungs and not reject them.

-Although our "hometel" is cozy, and we are blessed to be here, please pray that we will be able to return to our real home, soon and healthy. We get to see Levi often, but it is not quite the same as just living together at home as a family. Please pray for Seth, Me and Levi to not miss each other too much the hours we are not able to spend together.

Wow.

Wow. That's all I can say. This has been a crazy week, I can't even explain. I am such a happy girl right now to be sitting here with new lungs. I feel so blessed, and excited and overwhelmed. I am so grateful to all of the people who made this lung transplant possible. I am incredibly thankful to Jesus as well.

Getting the call and going into surgery was such a surreal experience. My family and I sat in anticipation and full of emotions wondering if this was it. If this was a "dry run" and we were just wasting our time, or if this was it- the call that could change my life. Or if this was it- the end of my life. We just didn't know. As we hugged and had teary "goodbyes" and "I'll see you laters" the whole thing was just so intense. Too intense- it almost didn't even feel like it was happening to me at all. As I was wheeled back to the operating room away from my loved ones I was full of emotions. It was scary, exciting, very quick, and very surreal. I don't remember much after that- which I am thankful for.

Waking up in ICU.... I was right to be scared. It was scary. I woke up very, very soon after the surgery was complete... probably sooner than anyone expected. I could not talk, move, communicate or get people's attention. No family was there... it was a very dark night. I was feeling terrible , with a very bad fever. I could hear medical professionals talking around me about my condition but was unable to correct them or add any input. This was very hard for me. As I lay there in a feverish state, hearing the somber, intense tones of what might be going wrong with me, I was positive I was dying. I just hoped I could stay alive long enough to have family come join me so I wouldn't have to be alone.

Sometime later the Dr. did come in and express to me that he thought I was doing well. I was in disbelief, but so relieved. The fever was decreasing and after a turn of events I was able to scrawl a word on a piece of paper, or motion for a swab, to try to soothe my dry, swollen mouth. They did a bronch, which I was awake for and remember everything, but that was okay with me at this point because I was alive and had a fighting chance of surviving.

Seth was not allowed in ICU nearly as much as I had hoped or he was told he could be. It was very hard. As morning rolled around, and sunshine came back into the world, it came back into my world as well. Seth came in and we managed to communicate somehow. I kept using sign language and signing out words to everyone, but quickly learned that I was also the only one with this skill and it was useless. Finally I heard the news that I could be extubated. Even though I probably only waited several hours for this to actually happen... it seemed like a lifetime. They pulled the tube out of my chest, and my swollen tongue just fell out behind it. I still couldn't speak, but was so happy nonetheless. After a quick wave to my Grandma and Grandpa Franks, I moved to a different room and things continued to get better. I had a wonderful daytime nurse (night time seemed like a different story) who helped me recover. He was so thoughtful, caring and greatly entertained me. He even sang.

I had so many wonderful friends who worked at the hospital pop their heads in to say "hi" to me. This meant so much, and I felt so loved. The hospital staff have become friends in many cases, and I loved how they came to encourage me and cheer for me. I have met some truly amazing people here at Stanford, and am so thankful for the love and friendship surrounding me.

So, I was extubated less than 24 hours post TX, and moved out of ICU within two days post TX. Am I blessed or what? My pain has been decently managed, sitting in a chair, up walking around, and tubes are coming off of me left and right. I had three tubes taken out today, and the only things left are just my two chest tubes and my mediport. I could not hope for such a great recovery. Although it is rough and I am still in pain often, it does not overshadow the feeling of just pure glee. I am so stoked at everything right now. I no longer need oxygen or breathing treatments. It is HUGE! My lungs are clearing and healing. I am amazed at this whole process, and it is truly indescribable...

I wish I knew more about the wonderful lady who generously donated her organs to save my (and other's) life. I continue to pray that she knew Jesus, and I pray for her family as well. As I was experiencing rainbows on the drive up to get new lungs, I'm sure her family and friends were filled with sadness and gloom. I pray for peace that passes understanding for them and that they can feel the love of God during this rough time.

I have heard rumors that she was a female, about 5' 2" and 30 years old. I am amazed at the perfect fit and timing of everything. I was truly at the end of my life, and worried that I might not receive the call in time. I am so grateful to her for deciding to be a donor, and in turn saving my life.

When I ponder the gift of life, I just think about how much I want to live up to that gift. Jesus died for me, and in turn I owe him my life and try to live daily to please him. I feel similar about my new lungs, and want to use them to the best of my ability. So watch out everyone, soon I will be running around you all in circles - ready to live and run and breathe!

If things continue to go as well as they have I could be out of the hospital and into the apartments before Christmas! This is the best Christmas gift ever, and I am so thrilled and excited. Sorry to those of you who don't get your presents or cards in time.... I have been a little preoccupied.... but I know you all understand. Please continue to keep us in your prayers and leave comments on the blog. They are all so encouraging! I love you all.

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.....

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.

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.

Your kidneying me

My I.V. Tobra was abruptly and unexpectedly halted this morning. I have been on it since Friday. The home care nurse took blood from me on Saturday or Sunday. They called me and said my "levels" were elevated and then lowered the dose of the Tobra. Then I gave more blood last night and the doctor's office called today and said there was a problem with my levels still. They were actually higher than the last time! So I stopped Tobra this morning and they want to get more blood from me today and tomorrow. (Those vampires, ha ha) They told me that my creatine had been elevated since I started I.V.s. I am still taking Imipenem and I am fretting about my poor lil' kidneys! I think the creatine and the Tobra levels are separate things so even though the Tobra is halted I am still worried about my other meds, especially Imipenem, affecting my kidneys. I am keeping tabs to make sure I don't hear "ringing in my ears" and am going to start drinking more water. They also ordered some I.V. fluids to help dilute also. Please pray that if it's the Lord's will my levels will go down, and no damage will be done to any of my organs.

Taking A Break

I have so many things to post, but I have been really busy and not only that- really sick.  I feel miserable, chills and feverish and spent all day on the couch... so stay tuned, I will post again someday!