What Exactly Am I Asking For?

After meeting with the doctors on Monday I am encouraged and feel more at peace.  I understand now why they made their decision and I respect it.  Stanford has been an amazing facility for me.  The team that I have here is like a family.  They support me through different means than everyone else in my life. 

Tuesday I sat down with my doctor to review my medical history.  I realized as he took notes that I have been through a number of trials and to a transplant board that might look dismal.  It appears as proof to why I would not be a good candidate for transplantation.  However, as I was reviewing it I saw it as multiple accounts where I defied the odds.  The rejection, the cancer, the infections, the bleeding, I survived it all.  I don’t give up, my body doesn’t give up, my God doesn’t give up, then my doctors shouldn’t give up either.  I am not just a survivor, I am a fighter and just as I fought my way to victory through all of those trials, that should be proof that I can fight my way through a challenging surgery. 

Now I realize that it isn’t just a surgery I have to survive, it is the compromising of my immune system afterwards.  I will be fighting against the world and I will be fighting against myself.  Please understand the severity of the request I am making.  I don’t just want lungs. I also need a liver.  This would not just be a double organ transplant, but a re-transplant as well. 

It has been explained to me that a re-transplant is a very complicated surgery in itself.  My second liver has attached itself inside of my abdominal cavity with scar tissue.  The surgeon will have to carve out that liver.  Once the liver is removed the vessels that attach to my liver will have been cut now for the second time.  Depending on how strong the walls of those vessels are will determine how much is left to re-attach the new liver.  The vessels can easily fray and deteriorate leaving very limited tissue to work with.  It is questionable if the stiches made will be able to hold in place.  If all of that went well there would still be the long surgery to replace my lungs.   

The average life expectancy for someone after lung transplantation drops to 50% after the first 5 years.  Most of those transplants were not in someone with the bacteria I have in my lungs.  B Cepacia is one of the most deadly bacteria to be colonized with and most facilities won’t transplant someone who has it because the survival rate is so small.  This has changed over the past few years because research has identified that there are different strains of the bacteria and some are more deadly than others.  I fortunately do not have the worst strain, but it still makes me a risk for transplant. 

Stanford’s CF program is still very young and they do not have much experience transplanting patients with B Cepacia.  The doctors have not experienced success in those transplants with B Cepacia that they have done.  The reason that they said no was because they did not feel they could do my case justice.  They didn’t want me to come out of surgery and to have diminished my quality of life.  There is still hope that another facility that has had success would be willing to take a risk with me.  I have been told that they have sent other patients with my bacteria to another facility that was willing to do the surgery and they are doing well. 

My doctor wrote a personalized letter about my history and in the next few days it should be sent to several different facilities.  The moves are being made and prayers are being said.  I am at peace knowing that I am following God’s plan and am not at mercy of these other hospitals.  He knows what is best and I don’t have to live in fear of the unknown. 

Thank you to all of you who have been praying, who have sent encouraging messages, and who have taken the time to read my blog.  What encourages me the most is just knowing that you are there.  I know that sometimes it’s hard to know what to say, but it’s not about the words, it’s about your presence.  Even when someone just “likes” a post it lets me know that you care.  

Important Update

I haven’t written in awhile, mostly because I have been trying to process what is going on.  I am not sure who to tell or what to say.  The truth is that I feel I am supposed to tell you. 

Last week the lung transplant team at Stanford met to discuss my case and to make a definitive decision of if they would be willing to transplant me when the time came.  After they had their meeting they sent my doctor in to tell me the news.  He looked me in the eye and told me that the team had come to a unanimous decision.  No. 

As simple as that my fate was laid before me.  I could see the defeat across his face and the near heartbreak in the physique of his nurse.  My heart didn’t stop, it didn’t sink, it didn’t harden, it just kept beating.  I don’t know if it was shock or if it was peace, but my first reaction was reactionless.  Maybe I hadn’t dared to hope that I was really going to get a transplant, perhaps it was a slight reaction of relief that I wouldn’t have to bare that pain, but really I think it was disbelief and denial. 

I woke up the next day and for a few moments I believed it had only been a bad dream.  Did that conversation really take place?  When I asked my doctor what was next my heart was begging for a plan of triumph, a plan for war.  I am not ready to give up without a fight.  The first thing that came out of his mouth was that eventually I would be looking at hospice and he asked if that was a term I was familiar with.  That is when it came, the flood of tears, my heart broke, I reacted, but I wasn’t about to accept it. 

I have sat mostly in silence over the past week as these conversations have continued.  I have known the answer they were all looking for, but I didn’t offer it.  Instead I have been processing and taking in all of the statements, opinions, and facts.  I still am. 

The battle isn’t over.  I can search out other facilities, I can look for second opinions, but I also have to look at the facts and the risks.  Tomorrow my parents and I are meeting with the doctors to discuss my case further and to really look at what my options are.  I hope to understand why the surgeons made the decision that they did and perhaps that knowledge will lead me to a different conclusion. 

It was explained to me that I have a choice to make, but no matter which battle I choose, I don’t have to fight it alone. 

The answer is that I will fight.  My answer is yes.  My answer is that I want to live.  I believe in miracles and I have seen God perform them again and again.  I believe that my job is to have faith, it is to rely on God, but it is also to fight.  Until He tells me otherwise, to obey Him is to fight for the life He has given me. 

One of the things that I often find myself questioning is the line between quality and quantity of life.  I look over the last 8 years and they have been hard, harder than I could’ve imagined.  But, as hard as those years were, they have also been some of the most rewarding years of my life. Who am I to say what qualifies as a good quality of life?  Maybe what feels like quality to me is different than what is quality to God?  I trust that if God wants me to live that the quality of my life will outweigh the adversity I have to overcome. 

Prayer for peace, discernment, wisdom, and a gracious spirit would be appreciated.  

Dreams Bigger Than Your Plans

I was frustrated with myself the other day when I realized that my idea of dreaming big was dreaming of the same things as everyone else.  In fact I think I was considering dreaming big as dreaming of what most people plan on.  My idea of dreaming with God was to dream of having a future.  I dreamt of graduating college, of falling in love, of working for Holt International, and of having a family. 

Now those don’t sound like very big dreams do they?

I serve a Big God who has proven to be bigger than my circumstances.  I do not live in a prison of disease.  I live in the freedom of faith.  Statistics have failed and my soul has prevailed.  I get to dream with a God who has the power to do more than I can fathom.  I get to dream bigger than I used to dare hope.  I can dream of miracles, living to see the day Cystic Fibrosis is cured.  I can dream of complete healing, of being able to breathe, hike, and run.  I can dream of a day that I am not surrounded by medicine.  I can dream of crossing borders to help, love, and maybe even save others.  I can dream of finishing a biography, of being a motivational speaker, of helping the broken in a different way.  Perhaps I could learn to dream so big that I could eliminate my worst fears. 

Maybe if I could learn how to think big, dream big, because I serve a big God, then my dreams would be real dreams, something worthy of dreaming.  My old dreams could turn into plans; those thoughts could be investments in my future.  People often say live like there is no tomorrow.  But that is my problem; I spend too much time in the present.  I see a 5-year plan or a 10-year plan as too big, too far away, too uncertain, and easily unattainable.  I live in a world of right now’s because I am afraid there is no future. 

At first I rationalized my fear as making me a realist.  I felt that living solely in the present was a good thing.  It made me open up more.  It made my desire to love stronger.  It taught me to cherish the things, rather the people in life that matter.  But that fear has crippled my ability to dream and diminished the power of my God. 

Jesus talks about how He loves childlike faith.  When we were children everything felt big and nothing seemed impossible.  Our parents were our superheroes.  They knew everything and could fix anything.  They were our protectors, our comforters, and our providers.  They believed in us and we believed in them. 

So when did I stop having that faith in my God, my Father?  When did I put limitations on what was possible?  God as my Father knows everything, can fix anything, He is my protector, my comforter, and my provider.  He believes in me and I believe in Him.  So why did I diminish my dreams amidst that faith?

Fear held me back.

Dreams were stolen.  I was broken.  I learned that life wasn’t fair and that pain was inevitable.  I bought into the lie that because I controlled my dreams, I had control over some of life’s pain and that meant I should protect myself.  If I didn’t dream too big, I wouldn’t fall so far.  If I didn’t fall so far, I could always pick myself back up and if I could pick myself up, that meant I was okay.  If I didn’t expect, if I didn’t hope, I wouldn’t be disappointed. 

Believing I could protect myself was a lie.  Believing that it was MY job to protect myself was a lie. All I did was limit God, dismiss His joy, and unsettle His peace within me. 

I read a quote today.  “A child has no trouble believing the unbelievable, nor does the genius or the madman.  It’s only you and I, with our big brains and our tiny hearts, who doubt and overthink and hesitate.” – Steven Pressfield

I want to have the faith of a child where I believe in the BIG.  I want to dream like a genius that believes nothing is impossible.  And I want to live like a madman whose fear doesn’t hold him back.   

Are your dreams BIG enough?  Have you asked God to help you dream beyond the boundaries you have placed?  If you dream with God you don’t have to fear failure. 

I know that even now my idea of dreaming big is small compared to God’s dreams for me.  But to me, these dreams feel big because I have no control over making them come true.  They are a risk for me because I could be disappointed, but I also know that I can trust if they don’t come true it only means God had a different, better plan in mind.  Any brokenness from the fallout of those dreams is temporary.  No one can ever tell me I am foolish for dreaming too big.  Dreaming big means to have hope despite the impossible, it is to know that no situation is hopeless.  Hope isn’t a promise, hope is a choice and so is how big you dare to dream.

Dream of Motherhood

Dreams… they seem to come and go, they adapt, they change, they inspire, and sometimes they are stolen.  One dream of mine is to be a mother.  God created me as a women to have the desire to be a mother.  I have always had a heart for children, but the feeling that grips me when I think about having my own is the ache of my heart swelling inside of me.  As if the thought itself could cause my heart to grow.  Having Cystic Fibrosis has in a way challenged that dream.  It hasn’t been stolen, but it so often feels unattainable.  The dream of someday, maybe, oh please, one day!

With my personal battle of CF I spend a lot of time questioning the future.  It could be argued that I spend too much time daydreaming.  So much of me longs to know what lies ahead, but there is a part of me that is glad I don’t.  As I look to the future I know that God is the one who is in control so all these thoughts are just what ifs. 

I have lost dreams of mine over the past few years and at times I live in the fear of the reminder that it will happen again.  I used to get so frustrated with God because I felt that these dreams were dreams He had given me.  He inspired them and then He let them fall apart.  Some of those dreams held the purpose of pushing me forward.  They motivated me to fight the battle I have been immersed in.  Some of the dreams at first appeared to be stolen, but were really just adapted.  Some dreams just disappeared and perhaps those were mine and not of God’s will?

As I was thinking about my desire to be a mom someday I worried that dream would be stolen from me as well.  Then I had a thought… Just because I don’t get to be a mom in this life doesn’t mean I wouldn’t get to be a mom at all. 

The hardest deaths to process are the deaths of children.  I couldn’t imagine a worse gut wrenching pain than losing your child.  As a mother it would be so hard to accept that God had any purpose in that.  That any purpose He had could counterbalance the ache in your heart.  I have known heartache, but there are some situations I can’t even begin to understand what people are feeling and this would be one of those.

We are all told that God will bring something good out of the pain, brokenness, despair, and utter darkness.  Even if we know that, even if we believe it, it doesn’t stop the pain, we still break.  The promise brings us hope, but it can take some time wandering in the darkness before we can see the light of that hope.  Sometimes even when God creates something beautiful out of the wreckage, we are still left with the question of why did it happen in the first place.  Though we may never know the why, I like to try and imagine what kind of ends could justify His means to allow such pain. 

So for all of the moms who have lost a child, perhaps this thought will bring some healing.  Maybe this thought will bring you some comfort.  Because for me as someone who hasn’t experienced your loss, we still share a dream and this thought has eased my mind through the wondering of if this dream will be stolen. 

What if those babies that end up in heaven are there for someone like me, someone who didn’t get to be a mother here on earth?  What if my dream is stolen from me, but when I get to Heaven my job would be to care for one of those innocently lost children? I would get to help care for them until you arrived. 

That thought is the one thing that I could see as having enough purpose to ease the heartache of the loss.  It wouldn’t dismiss the heartache, but maybe that would be part of the beauty and the hope one could hold onto?  

I HATE my disease, but I love my life

Where comes the time when we get to be mad at the world?  When it is okay to be angered that life isn’t fair?  Mad at the circumstances?

I came to the realization that it IS okay to be mad at the circumstances.  It is okay to be mad at my disease.  It is okay to be frustrated with the situation.  It isn’t betraying my faith, it isn’t defying God, and it isn’t wrong.  I have always felt that I was supposed to graciously accept my disease, as God’s plan for my life and that it was wrong for me to hate my disease.  That God was using my life, my struggle, my fight for His glory and I would be foolish to step outside of that box and think anything else. 

I HATE my disease, but I love my life.  It is perfectly okay to say that because guess what?  God is frustrated too.  His heart breaks for His children.  He didn’t choose this for me.  He is making something of my life despite it. 

I think it is easy to get confused and forget that God is a compassionate God.  He doesn’t like to watch his children suffer.  I believe He hates Cystic Fibrosis too.  He also knows that it isn’t fair.  Cystic Fibrosis, MD, Cancer, anger God too.  He didn’t create these things and they hurt Him, they break His heart.  He feels just like me.

I know that too often I forget how real my God is.  I don’t forget that He exists, but I forget that He has anything in common with me.  That my God isn’t just a Savior, isn’t just someone that I worship, but that He intimately knows me.  That despite His perfection, He can still relate to me.  His grace and compassion are tangible.  That when my chest aches from the tears, that when I punch my pillow out of frustration, that when I feel almost hopeless, He has known my sorrow, frustration, and pain. 

God hasn’t asked me to be perfect.  He hasn’t demanded unfaltering hope, and He definitely hasn’t called me to be a stoic warrior.

So maybe that’s what it means to see my weakness as a gift.  That it’s okay to fall apart sometimes.  It is okay to be angry.  Its not about finding justification, its about the freedom in the release from holding it all in.  It’s about knowing that I am not alone. I’m not fighting alone; I don’t have to be strong.  He knows my weakness and He allowed me to be this way.  He wants to take care of me. 

I don’t get to be there for everyone else, but maybe I somehow bless them by allowing them to be here for me.  It’s not about what I can do, but about who I am.  My body is weak, but my soul is strong.  Its not selfish to allow people to be close to me because I hope that the closer they get the more they see what God is doing in my life. 

This whole time I’ve had it all wrong.  My weakness is how I get to bring people in.  I’m not selfish to get close to them, its actually disobeying God to push them away. 

I’ve carried the guilt for a long time.  The guilt of the pain my situation has caused those that have been close to me,  I tried so hard to be strong for everyone else.  I didn’t choose this disease, my family, or the people who have come into my life.  God orchestrated it all.  The pain they felt wasn’t my fault, it wasn’t bad, God allowed it.  Through my weakness He has made others strong.  My parents, my brother, my best friends.

I get to rejoice that I am weak!  Most days are hard and every night I pray for a cure, but that doesn’t mean I am not celebrating in my weakness.