I love this!  
Hebrews 10:35-36
 So do not throw away this confident trust in the Lord. Remember the great reward it brings you! 36 Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.
I've never come across this verse before, but I'm praying for 'patient endurance'... just set the first appointment to sign paper work and complete prelim testing for the clinical trial.

Uncharted Territory

 

If you’ve followed my blog over the past 3 years you know that my self-proclaimed life’s journey has been a path which includes transplant – it’s been the Emerald City on my yellow brick road of life. This year my focus has become far less about the destination and more about the journey – and what a journey it has been!

Nearly 4 years ago doctors started preparing me for the reality that I was losing my transplanted kidney.  Years of chronic rejection, acute rejection and wear-and-tear had taken its toll over time and three years ago this December I started Hemodialysis.  During that time I was humbled by the amount of friends and family that showed up to be tested – I don’t think I could ever fully describe how it feels to have someone exhibit that level of willingness to sacrifice a part of themselves on my behalf – Or express my gratitude to them or the countless others who’ve prayed faithfully for me these many years.  I’m blessed to sojourn with people whose lives reflect Jesus!

Out of the 15+ people tested, two were close enough matches to go through the full battery of testing, and one emerged the best match – a total stranger.

As the day of my transplant neared I had all my ducks in a row – everything was going according to my plans.  I was on such a spiritual mountain – praising God for bringing me to my desired outcome.  I felt like I’d paid my dues with dialysis and was ready to be rewarded for my patience.  One particular moment is etched in my memory – I was marveling at all that God had taught me in my experiences and asking Him to help me trust Him and for greater patience…. I feel like I need to add a disclaimer here – BE CAREFUL WHAT YOU ASK FOR!

Less than a week later, my plans went horribly arry and God blessed me with an opportunity (multiple, really) to use patience.

In the span of three months my transplant was cancelled twice, I had an appendicitis with exploratory surgery followed by a massive infection.  I had to return to hemodialysis and experienced cardiac arrest during a dialysis treatment.  Did I mention I also lost my job? I had long-since left the spiritual mountaintop and was camped out in a valley below sea level. I was seriously questioning God’s overestimation of my abilities to withstand the events in my life.

But God is faithful and even in the depths of my discouragement I continued to hold onto hope.  I clung to these verses:

• Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12,
• He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. Psalm 40:2  
• We are hard pressed on every side, but not crushed; perplexed, but not in despair; ⁹ persecuted, but not abandoned; struck down, but not destroyed. 2 Corinthians 4:8-9

I bided my time at in-center dialysis – I was politely hostile to the staff and consumed by looking forward to healing enough to switch to home dialysis and recuperate enough to get back on the path to transplant.

The final blow to my plans came while I was lying on an exam table, with his hand wrist deep in my abdomen, my surgeon informed me that my antibodies had rocketed to levels that made my donor’s kidney incompatible with my body. 

In some ways it feels like I’ve lived a lifetime in the last three years.  I’ve had a lot of experiences I hope never to repeat, but I wouldn’t trade the lessons I’ve learned or the blessings that resulted from those events. 

They say hind sight is 20-20 – well here’s my hindsight.  God’s plans for my life are so much better than my own.  All the while I was making plans I only had the small picture, but God saw the bigger picture – He’s orchestrated events so magnificently, in a way only He could.

If I had received my donor’s kidney in May 2011 when it was originally scheduled, and later had an appendicitis, it is likely I would have lost the transplant and possibly my life.

By no longer having the expectation of getting her kidney, a once stranger, has become a dear family friend and an immense blessing in my life!

I returned to in-center dialysis early this year following a wicked tricky infection.  I kept ending up in-center – 3 times in 2 years… seems to me maybe I had something to learn.  God has worked on my heart in so many ways.  He’s knocked down the walls of discontent and hostility.  When I became less self-involved I realized it really wasn’t all about me.  When my focus shifted to Christ’s purpose instead of self-pity I found joy unspeakable and purpose.

And once again, God has opened the door to transplant.  Its really beyond my comprehension, but to my utter AWE that God has brought me to the place I’m at today.  I’ve been offered the opportunity to participate in a Clinical Trial to test an experimental therapy.  The purpose of the study is to test a medication which has shown some promise in preventing AMR (Antibody Mediated Rejection)  in patients who are highly sensitized to their donor (high antibody levels).

All this last week I struggled with making a decision – I have trouble choosing where to eat lunch – this was a tad more pivotal decision than tator tots vs curly fries.  I was nearly paralyzed with the fear that I was going to make a decision contrary to God’s will for my life.  I read and re-read the 15 pages of risks, potential benefits and required trial commitment.  I talked to people smarter than myself and prayed and read my Bible – wishing God would start text me the answer. 

Among the people I went to for counsel was my friend, who is also the potential donor – she asked me this question.  ‘How did we get here?’  Here’s the facts:

1.     I’m at an out-of-state transplant center that I only went to because my local transplant center closed.

2.     This center is one of less than 50 centers world-wide chosen to participate in this trial, making a treatment available to me that I could never afford on my own

How did I get here – well I can tell you with surety – It didn’t happen by chance! 

I think I already knew what God was providing for me, but even with the best intentions I still struggle with the fear of the unknown.  Friday, I placed the call to agree to participate in this trial and made my first official step into the Unknown.  I didn’t get a Heavenly text to confirm I was making the right choice, but the Lord has blessed me with a Philippians 4:7 peace – ‘surpassing all understanding to guard [my] heart and mind through Christ Jesus’.  And I did get a text this week that just confirmed for me that this is the path Christ has set before me…. My donor texted me to call her – when I did she told me that during a business function her husband had been placed next to the new director of transplant at the previously closed home-town transplant center.  He had come from the transplant center I’m now established at and was speaking glowingly of their transplant surgeon, namely the one conducting this Clinical Trial… That was all the confirmation I needed.

Not everybody will understand my decision to be a guinea pig – It wasn’t a decision I made lightly and I don’t have any delusions of grandeur, but my goal has shifted and my overriding desire isn’t simply a healthy transplant – awesome as that would be, my ultimate desire is to follow God’s will for my life and to be used by Him for His greater purpose – but I can’t expect God to answer my prayer to guide my path unless I’m willing to move my feet.  Consider this one very big step.

I have a lot of unknowns ahead of me – but my emotions and the situations in my life don’t change the faithfulness of my God.  I’m working on compiling God’s promises (verses), so that I will be prepared when I hit potholes and valleys along this new leg of Uncharted Territory – would you help me?  I’d love to know what verses you claim for encouragement or anxiety-busting promises!  Here’s one I hope encourages you today -- Jeremiah 29:11  For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Give thanks to the Lord, for he is good;
    his love endures forever.

When hard pressed, I cried to the Lord;
    he brought me into a spacious place.
⁶ The Lord is with me; I will not be afraid.
    What can mere mortals do to me?
⁷ The Lord is with me; he is my helper.
    I look in triumph on my enemies.

⁸ It is better to take refuge in the Lord
    than to trust in humans.

The Lord is my strength and my defense^[a];
    he has become my salvation.

Psalm 118:1,5-8,14

I'm in the process of re-reading the 15-page drug trial information packet -- It brings back memories of nursing school -- similar feelings too... No where in all my reading have I found a list of the side effects of reading this... bewilderment, overwhelming feelings of fatigue, blurred vision and sore behind. I would appreciate your prayers for my wise discernment and decision-making. Extra credit for any of my nursing friends who would be willing to check out any peer-reviewed journal articles related to the drug ECULIZUMAB.

Don't Poke the Guinea Pig!

Tuesday my family, my potential donor and myself met for a family meeting with my transplant center staff and doctors.  I was the topic of conversation.

It’s a little bizarre to know clinical facts, statistics and science… it’s a whole ‘nuther ball of wax to live it.  The doctor stood at the white board with his invisible marker (or maybe I was supposed to wear 3-D glasses – all I know is he was writing, but I couldn’t see it – Maybe all their budget goes into transplant supplies…).  He furiously sketched out my statistics.

               At my current PRA (antibody measurement) of 88% (best is 0, worst is 100), my statistical chance of getting a kidney is 5%/year – estimated 10 year wait on the deceased donor list.  By joining the paired-donor exchange list it increases my odds of getting a kidney by about 2-3%/year – estimated 7-8 year wait for a kidney.

He was really honest and clear – It was all things I knew, but I appreciated his tendency to not beat around the bush…  After discussing my current transplant options and the life expectancy of dialysis (some people can live up to 25 years, but the average life span on dialysis is 5 years).  The Doctor presented me with a 4^th option – participating in a drug trial.

This 4^th option is offered to a limited population of highly sensitized patients and comes with a lot of risks and potential benefits.

It’s a lot to think about, I’m still working on the stack of information they sent me home with -- Yesterday’s reading included the full-page, single-spaced risks, side effects, warnings and legal disclaimers sheet.  It’s enough to get my inner guinea pig dancing – if I had a tail it would be wagging, no, wait, that’s just one of the side effects…     Have you ever watched a drug commercials, wondering what would possess a person to take a medication when the list of potential side effects sound more alarming than the initial problem? It’s a balancing act between treating the original problem and dealing with the subsequent problems that arise as a result of the treatment.  As I was reading the list of potential problems I started playing the risks assessment game – is that a side effect I have now, have I had it before or am I willing to deal with it in the future.. Imagine my delight when I found a side effect/risk I know for certain I won’t have to worry about – So glad to be a girl today!

We all make decisions that have a lasting impact on our lives – this is mine. 

There’s a lot to consider – I’m praying that the Lord will guide my steps and that fear or doubt wouldn’t cloud my mind as I seek to follow the path Christ has set before me.  My prayer throughout this long journey has evolved from – ‘A kidney’s what I want, make that your will’ to (most of the time) ‘ Lord, let me desire to be within your will and use my life for Your greater purpose’.  In my quiet time this week I felt such an urgency to make the 'right decision' -- I was blessed when I came upon this verse during my quiet time - James 1:2-5 Consider it pure joy, my brothers and sisters,^[a] whenever you face trials of many kinds, ³ because you know that the testing of your faith produces perseverance. ⁴ Let perseverance finish its work so that you may be mature and complete, not lacking anything. ⁵ If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.