UCSF Evaluation

I have been reading the story of Isaac in Genesis.  The story where he is in the land of the Philistines and out of jealousy they are trying to drive Isaac and his family out of the land.  They continue to cut off his water source by filling in his well.  Instead of getting angry and causing a war with the philistines, he perseveres and digs a new well.  This happens again and again.  He was patient and obedient trusting that God would give him the land as promised and he didn’t move away.  In the same way that is what my family is doing right now, we are digging wells.

Stanford was where we started.  I still love my medical team there and if I do end up being transplanted somewhere else I hope to be able to return my care to them.  I have been so blessed to have a staff that is invested in my life, not just as a patient, but also as a person.

You are probably familiar with the saying God does not call the qualified, He qualifies the called.  In the same way that He chooses people whose lives will be a testimony of His manifestation through them, He also allows chaotic situations where His provision will be made the most evident. It took us one new battery, one battery charger, one socket set, two screwdrivers, two power hijacks, three hours of sleep, 3 helpful locals, one off duty cop and we made it to our appointment! Oh and one Powerful providing God!!!

We got back in our car after stopping for dinner at In-N-Out and our headlights started going in and out.  It wasn’t long before the battery light was coming on and we running on 9 volts.  We made it to Walmart right off of the Willows exit where thankfully we were in luck with a 24-hour store.  Out front we were able to find an outlet.  My dad went inside to buy a new battery, tools, and an extension cord.  I remember thinking, thankfully I have dry shampoo, there is a bathroom, and I don’t need power to run my IVs, I could spend the night here and be just fine.  As far as making it to the appointment, I wasn’t quite as convinced of that. 

After a long night and a lot of repetitious prayer and battery recharges we made it into San Francisco.  We had just taken our exit when we found ourselves in another near battery failure.  Looking for parking is not an easy task.  We headed down a hill and saw the other side of the street was empty so my dad went to make a u-turn.  As soon as our car was perfectly perpendicular the battery died and we rolled forward with a lurch knocking into some garbage cans.  Cars  were trying to get around us as my dad and brother jumped out of the Tahoe.  Quick, Chinese fire drill!  My mom hopped into the driver seat and tried with all of her strength to turn the wheel.  The advancement of power steering we take for granted became very evident.  Suddenly a few people came out of their houses and a man walking by dropped his bag and together they all pushed.  The car was now parallel to the curb and with a few handshakes and breathy thank you’s our local heroes were about their daily business.  A car pulled up and a man jumped out, “Can someone who is not out of breathe please answer me, do you need a tow truck?”  Oh, sir we were in need of a lot more than a tow truck.  My mom told him we were on our way to a transplant evaluation and without hesitation he said “get your daughter in my car right now.”  My mom and I got in to find out he was an undercover cop on his day off and he was now our personal escort to the hospital.  He radioed his friends to tell them he would be late to breakfast, he had decided to do the “good Christian thing” and help us out.  Little did he understand the truth in that statement. 

We made it to the appointment with minutes to spare.  It was all so unbelievable that I almost wanted to cry.  My heart was pounding with the adrenaline of it all.  The appointment itself went smoothly.  I met with one doctor who will now take my case and present it to a board who will make the final decision.  All that I know is that God clearly wanted me to make it to that appointment and He made His presence undeniably clear.  Whatever the outcome is, I know that it is His will and plan.  There is no doubt in my mind for human error to occur or that I should have done things differently or that I wasted efforts in seeking their facility. 

I have said it before and I will say it again.  The decision of the transplant facilities will not break me because my hope is not in them, their doctors, or their surgeons, my hope is in Christ.  As confusing as that might seem to me at times, I know that He is the one who sustains me and will never forsake me.  So, as hard as the future might be to face, I know that it is a far more perfect plan than I can understand.

23

This last year has been the hardest year of my life.  It has brought about more tears, more frustration, and more fear than any year before.  But, this year has also been so full of life, doing the things I love, enjoying the days I felt good, fostering the relationships that mean the most to me, and checking things off my bucket list.  One of those being growing closer to God, and I will let you in on a secret, it has been so much harder than I anticipated.  There have been pits, deep trenches, and some very dark valleys, but God never left, He continued to fulfill promises even when I couldn’t see them, He continued to give me strength when I thought I couldn’t go any further, and He carried me along the path when I didn’t have the heart. 

Today being my birthday has reminded me who is the keeper of time.  I was told I wouldn’t live to be 5 years old, I was told “this might be the end” more than twice this year, and here it is, a new year, another year older, another milestone to celebrate! 

This last year has been a challenge learning the lesson of hope.  Where is it that I place my hope and how do I stand firm in that hope when everywhere I turn it feels something is trying to steal it.  My hope lies in the one thing that cannot be put to shame, my hope is in the one thing that can bring absolute peace, and my hope is in the one person that won’t disappoint, because my faith is in Christ.  It is not in my doctor, it is not in surgeons, it is not in insurance companies, it is not in transplant facilities, it is not in medicine, it is not in me, and it is not in anyone else, it is in CHRIST.  These last few months have challenged me to recognize and keep that hope alive and in the right place. 

God is gracious, He is sovereign, He is compassionate, He is in control of my life, He numbers my days, Him alone, and He is where my hope is found.  I know He brings peace, I know He promises healing, and I know that He will never give me more than I can handle.  One thing I have realized is that even if you know it, it doesn’t mean you feel it.  You know that you can trust and rest in Christ, but sometimes it is still hard to obey.  The hardest thing about following Christ is that you know He has the best in store for you and that He will take care of you, but with that it means accepting it might be a painful path. 

 

I do not know what is in store for me this year, but I am trying to claim that peace, place that hope, and seek rest.  I have an appointment with the transplant team at UCSF on the 21^st of February.  I could use your prayers for favor with their team, peace in the midst of all these heavy life unknowns, and a renewed spirit to take on the battle.

Thank you all for your support!  You carry me through and God is using you.

Resting Report

I have been resting.  Resting in Christ is possibly the most freeing experience.  In a way it seems self-indulgent and irresponsible.  It’s funny how choosing trust, dismissing fears, relying on God, and dismissing worry can feel like it looks lazy and reckless.  Maybe that is my head trying to pull away from my heart again.  However, choosing trust brings an amazing sense of peace.

I am going into my 4^th week of health.  Praise the Lord!  Oh my, holy granola Batman, is God so good!! It’s strange, I almost don’t know how to talk about my life when everything is going well.  I feel like it is me saying hey I’m so awesome, look at all I am doing, isn’t my life so great?  Well I guess it is like that, but it is look, God gave me health, He gave me rest, He gave me energized zest to do the things I love!! So if you want to rejoice with me, here are a few of the things I have been able to do!

Travel to Corvallis for Varsity House worship twice!  I have been able to visit my brother, see him play in his first IM football game, take him out to lunch, try miracle berries, and search for nerf guns.  I have been able to bake vanilla cupcakes with pumpkin pie frosting, chocolate marshmallow cookies, chocolate cupcakes with cookie dough frosting, and a chocolate raspberry cake.  I guess I have had a thing for chocolate. I have been able to make lemon basil pizza, lime tilapia, homemade tortilla chips, and peach cobbler.  I was able to go to my best friends open house for her new apartment and a surprise birthday party for one of my favorite friends!  I got to go to the OSU vs. Utah game and the Varsity House Halloween root beer mugger!  I was able to dress up as Audrey Hepburn and keep up with my friends throughout the night.  I also was able to see Cirque du Soleil here in Eugene and it was amazing!  I have never seen anything like it.  Dylan even got called up from the audience.  He was born for the stage/podium.  I was also here to take my midterm, which went smoothly!  I can’t tell you what a relief it has been to be well and caught up in school.  I am almost like a normal student!

For those of you who would like to know how to pray… I would love prayer for continued health.  I have started to notice an increase in my cough and have been praying extra hard for protection for my lungs.  I am scheduled for my minor surgery next week to have my port placed.  In order to have the surgery I need to go into it with ideal health and lung function.  Please please pray that I gain back my strength and that the surgery goes smoothly.  I am really looking forward to having a port again!  The surgery is on the 8^th at 6:30 a.m. and then I have a clinic appointment on the 9^th. 

Lord please equip me with powerful lungs and a happy liver!

Thank you!

My Well Well Visit

For those of you who have been partnering with me in prayer, I want to thank you!  This last Wednesday I was in CA for a follow up appointment from my last hospitalization.  My lung function remains at 50%, which is a proven promise from God.  He has brought healing to my lungs and it is proof that He has heard your prayers! 

Not only are my lungs functioning well, but I am also gaining weight.  In my case a few pounds is something to celebrate.  I have almost reached a healthy weight which will not only keep my warmer, but healthier.  Maintaining a healthy body weight helps my lungs and it creates a buffer for when the next infection comes.  Since my infection last December I have struggled to gain weight and my lungs have taken the toll.  Each infection set me back further.  I am happy to see my body trending in the direction of health. 

I take each day as it comes and some things are still too much for my body to handle.  I know that often I push myself too far and spend a day or two in pain.  I loved going to the OSU vs. Utah game on Saturday and cheering my Beavers on!  Later that night I felt the pain in my lungs from yelling so much, but oh was it worth it!  Being able to stand for the whole game and walk the steps of the stadium without coughing up blood was such an amazing experience! 

My motto this past year has been to take each day as it comes as perhaps the healthiest I am ever going to be.  A couple years ago all I could think about was the day transplant would come.  That was the day I was looking forward to and constantly hoping was drawing near.  Then I was hit with a particularly terrible pneumonia in December and reality slapped me pretty hard.  I realized that was how horrible I would feel before I was even considered eligible for a lung transplant.  I was in terrible pain, my lung function was in the 20’s, and I didn’t have the energy to shower.  I realized that I had been taking advantage of my health.  Instead of praying and pushing for a transplant, I needed to be out pushing and pursuing my dreams appreciating the health that I had. 

So today, my motto continues to be appreciating my stage of health every day as maybe the best I will ever feel.  There is no time to sit around and wait for the perfect opportunity to live life.  Right now is always the best time.  Every day I wake up and I thank the Lord for the breath He has given me.  Lately, that breath has been more than I have had in months.  I am enjoying this time of rest and being healthy.  My doctor was as excited as I was with my improvement. 

You know the expression ‘jump for joy’?  Well I now know where it came from.  Sometimes God does more than we can hope or imagine and you can’t help but actually jump with excitement and gratitude.  Joy is truly the best feeling in the world.  Joy dismisses fear and it triumphs over trials.  It defeats anger and it cures heartache.  Joy does not need an explanation; it is not of your will, but of God’s grace. 

Not only are my lungs happy, but my liver is too!  This is a very rare occurrence and I don’t believe it is by chance.  I believe that God has heard your prayers and that for this moment He has answered them and provided me with a time of homeostasis. 

In a few weeks I am going to schedule a procedure to have a new port placed.  I had a port placed at the end of summer in 2011, but when I went septic earlier this year the terrible bacteria that is in my lungs harbored in my port and they had to surgically remove it.  The infection that I had that spread from my lungs to my blood could have killed me if we had caught it any later.  It was by God’s grace and the knowledge of my amazing doctor that God has placed in my life that saved me.  There is a risk that this could happen again, but I am running out of options for veins for IV antibiotics.  Prayers of protection for my line and prevention of infection would be much appreciated!

The last thing I would like to update you on is the transplant situation.  At my last appointment we discussed the facilities that my doctor has sent my chart to with a request for transplantation when the time comes.  To clarify, I do not need a transplant right not, but I will inevitably in the future so it is best to have a plan before I end up in crisis.  Two of the five centers responded with a no.  We are still waiting to hear back from University of San Francisco, Pittsburgh, and Chapel Hill.  I know that God is the one who is in control and trust that His provision is in place.  I have no fears, no doubts, and no worries.  My future is secure regardless of what happens.