had a fistulagram & angioplasty today -- They say you should never shop when you're hungry and never drive under the influence, but no one ever warns you about shopping under the influence (of sedation, that is). I would like to apologize to the kind man in the baking aisle. The absence of anise extract does not usually elicit such dramatic outbursts. I thought I had my act together, but if that were true why was my mom following a cart's length behind me? Shopping while Sedated is risky business!

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.

                   

 

Slow Learners Should Wear a Life Vest in Deep Water...

Learning to Relinquish My Will to

Trust My Father's

 

Before the month ends I have plans to meet with the kidney transplant team – they’ve called a ‘Family Meeting’.  The name alone elicits flashbacks of parent-teacher conferences –knowing I’m the topic of conversation gives me the heebie-geebies! 

It’s been brought to my attention that I may qualify to participate in a new trial treatment program.  The potential treatment would consist of at least a week’s worth of  treatments filtering my blood and targeting my antibodies – think Whack-a-Mole, except I’m the arcade game, the treatment’s the mallet, and the antibodies are the target -- the goal would be to neutralize my antibodies – If successful, I would be able to receive the kidney I was set to get 2 ½ years ago, prior to my antibody level sky-rocketing.

The prospect of a transplant within my grasp is super-exciting, but my excitement is tempered.

I’ve been excited before, and I’ve also been very disappointed – When things didn’t go as I planned I threw the ultimate spiritual (and physical) tantrum.  I went through a period of desolation not understanding how God could have misunderstood, and failed to execute, the plans I’d worked so hard to put in order. It was an unpleasant time in my history and for all those around me (if you think I’m exaggerating, flip back my blogs from June 2011 on – I’m putting it mildly). 

In the 2 plus years since my transplant was cancelled I’ve learned some incredibly difficult – but eternally edifying lessons.  You see, I had it all wrong – I was operating under the flawed ideology of ‘my will be done’, not ‘God’s will be done’.  Oh, I might have told you I wanted God’s will, but in truth, what I really wanted was for God to endorse my will. 

I’m cringing as I write this, thinking of how very patient God has been (and is) waiting for me to grasp the lessons He’s laid out for me.  Being honest with myself is as revealing as skinny jeans on a fluffy girl --  painful and embarrassing! 

What I’ve learned is that God’s plans for my life are based on His understanding of the ‘Big Picture’ – and He wants His best for me.   

·        Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight. Proverbs 3:5-6

·        Do you not know? Have you not heard?
The Lord is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and His understanding no one can fathom.
He gives strength to the weary and increases the power of the weak.
Even youths grow tired and weary, and young men stumble and fall;
but those who hope in the Lord will renew their strength. They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint. Isaiah 40:28-31

 

 So this time around I have a plan, but my plan isn’t to have a transplant – oh, don’t get me wrong… a working transplant would be AWESOME, but more than that I am praying for God’s will.  I want my desires to be in line with what God has for me – if it’s a kidney, then I want it in His time, but if its in His plan for me to wait – I want to serve Him the best I can in the time He’s given me.

Joseph has become a real hero of faith for me (Genesis 37-45) – Sold into slavery he must have felt such betrayal– Potiphar’s prison was far removed from his dreams of greatness, but he was ready to be used by God even in the midst of his disappointments.  I think my best laid plan is to trust God to know best.  That’s why I’m asking for your prayers – that I will be wise in the decisions I make and trusting God to have my best in His plans. 

Oh, yeah – you know that story of Joseph?  He didn’t stay in prison, through events that only an all-knowing God could orchestrate – Joseph’s dreams came true.  I serve the same God that Joseph did and it excites me beyond measure to know that God has a plan for my life!

This song echoes my heart’s beat lately as I seek God’s will for my life.

http://www.youtube.com/watch?v=CsjZ94K7UQs

 

I don't know where to go from here
It all used to seem so clear
I'm finding I can't do this on my own

I don't know where to go from here
As long as I know that You are near
I'm done fighting, I'm finally letting go

I will trust in You
You've never failed before
I will trust in You

If there's a road I should walk
Help me find it if I need to be still
Give me peace for the moment
Whatever Your will, whatever Your will

Can you help me find it?
Can you help me find it?

I'm giving You fear and You give faith
I giving you doubt, You give me grace
For every step I've never been alone

Even when it hurts, You'll have Your way
Even in the valley I will say
With every breath, You've never let me go

I will wait for You
You've never failed before
I will wait for You

If there's a road I should walk
Help me find it if I need to be still
Give me peace for the moment
Whatever Your will, whatever Your will

Can you help me find it?
Can you help me find it?

I lift my empty hands
(Come fill me up again)
Have Your way my King
(I give my all to You)

I lift my eyes again
(Was blind but now I see)
'Cause You are all I need

If there's a road I should walk
Help me find it if I need to be still
Give me peace for the moment
Whatever Your will, whatever Your will

Can you help me find it?
Can you help me find it?

Sidewalk Prophets - Help Me Find It Lyrics

 

Potty Breaks are for People with Kidneys

Wow! In the last week, I’ve spent nearly an hour trying to explain the function of kidneys or rather, the lack of kidneys.  It seems to be inconceivable that a person doesn’t have kidneys.  I was scheduled for a test that required drinking copious amounts of water to achieve a full bladder.

Okay, well, I see two problems with this:

1)       I have a strict fluid restriction because I don’t have kidneys, and

2)      I can’t pee, hence the fluid restriction

The first person I tried to explain this to became flustered when I asked for alternate instructions. I explained that I could drink ‘til the cows came home, but the only thing that would accomplish is me swelling up to resemble those cows.   After calling to confer with another professional she instructed me to drink within my fluid restriction and ‘Just do the best you can’ – Why hadn’t I thought of that?  All this time I was thinking my inability to urinate was directly linked to my lack of kidneys  -- when all along I just wasn’t doing my best!

The next person I talked to kept saying, ‘You poor thing’ and marveling that I was ‘Just 30’.  When I finally convinced her of my kidney-less state (no small task I assure you),  she wanted to know ‘what do you do?’  (I’m so glad  God gifted me with quick wit/retorts that often get hung up in Eastern Standard Time, otherwise I’d be apologizing far more frequently for my sarcastic remarks). 

I guess I’m a bit of an enigma, but after talking to so many people who couldn’t fathom what I was trying to tell them I started to doubt it myself.  I had to double check with my dialysis nurse that I had my facts straight – and wouldn’t you know it – this time – I knew what I was talking about J

Today was a rough day at treatment -- Rough is when my blood pressure plummets and my feet end up above my head -- It tends to take the starch out of my sails for the rest of the day.  It was after such an episode today at dialysis that a new patient took the chair beside me -- I could tell she was new because was using an IJ catheter, she looked incredibly nervous & she came without a blanket (no one makes that mistake twice).
A year or two ago I would have been so utterly consumed with myself and my discomfort that I would have likely ignored my new neighbor.  Today I didn't.  It just amazes me the blessings God ahs for me when I take the time to look beyond myself. 
It also reminded me how far God has brought me, helping me through the oh-so-many anxieties and new experiences -- I am in awe of how GREAT God is!

Kidneys Not Included

Every once in a while I have a startlingly clear revelation – For instance – I knew from an early age that gray, really is not my color, farm cats don’t have 9 nine lives and I really should’ve had a V8.  More clarity came in college when I learned that paying money for a haircut is far better than ‘paying’ for the repercussions of a bad self-cut (p.s. – curly hair shrinks when dry).

I stumbled upon my most recent revelation completely by accident (which I suppose is a redundant statement, who purposefully stumbles…).  I was at my hairdresser’s place having my hair cut (lesson learned) – when she started talking about a guy she wanted to introduce me to.  Professionally, she thought he could help me with some insurance issues, personally, she thought a match might be in our future.  I voiced interest in talking with him professionally and was open to other possibilities.  Excitedly she told me how she really was going to ‘talk me up’ to him and proceeded to dial his number – As soon as he answered she introduced me – ‘Hey!  I have a single 30-year old gal here…. *drum roll*  who has a LOT of health problems.’   I don’t see much a future for her in advertising, or me for hearing from him J

What I learned from this experience is that I have had an identity crisis – Dialysis has become such a big part of my life that it became one of my largest self-identifying features.  Even when I’m not in the chair I have the physical reminders with me always.  Don’t get me wrong, it’s not all I think about – often I’m caught totally off guard when someone asks me what’s wrong with my arm.  But honestly, I do struggle with knowing what kind of disclaimer I should come with (Kidneys Not Included?) especially when it comes to meeting new people.

I am so much more than my illness – I’m creative, positive, and playful --- But most of all – I’m a child of the King and the person I am today has been shaped by the joys and struggles He continues to bring me through.  This revelation is a work in progress, but the Lord has truly convicted me of my insecurities and He is gently reminding me that my identity is in Him – and in Him, I am a new creation, chosen, loved and created for a purpose far beyond my insecurities.

 

Top of Form

2 Corinthians 5:17 ESV

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come.

1 Peter 2:9 ESV

But you are a chosen race, a royal priesthood, a holy nation, a people for his own possession, that you may proclaim the excellencies of him who called you out of darkness into his marvelous light.

Galatians 2:20 ESV

I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.

Romans 12:2 ESV 

Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.

John 1:12 ESV 

But to all who did receive him, who believed in his name, he gave the right to become children of God,
Check out this song by Matthew West -- Hello My Name Is (lyrics by Matthew West)

Attitude Adjustments - Aisle 8

Some days my world is incredibly small – population me.  Yesterday started out as one of those days. Every few weeks the In-Center nursing staff rotate their chair assignments so that they are familiar with all the dialysis patients – Why is this significant?  Well, to some it wouldn’t matter, but it takes time to break in a nurse that has never stuck my fistula – those first few times, in my limited experience – are painful.  I was already uptight after last week’s bleeding episode.  My world shrinks every so much when I place my focus on myself – I become really short-sided. 

Yesterday’s world news reported the use of chemical weapons in the Middle East & a successful lung transplant for a young girl – but the Headlines in my life included – a painful needle stick, followed by a blood pressure that bottomed-out and my site bleeding.  I’m pretty sure you won’t find any of those latter topics on FOX News, but it really consumed my thoughts yesterday morning. 

I left dialysis & stopped at the grocery store – While I was waiting on an order to be filled a lady behind the counter indicated towards my fistula ( I thought this was going to be my opportunity to use one of my new comebacks – ‘ oh, this? Snake bite. Big Snake.’)  But then she asked if she had seen me at dialysis.  She told me her sister was a dialysis patient & that she had seen me when she took her sister.  She began to tell me of her sister – on dialysis now after many years of being diabetic & being a cancer survivor.  Her next comment was, ‘ It takes a lot of faith’. 

Christ is just as sovereign & gracious & in-control on my bad days.  He isn’t surprised or set off-balance when I lose my focus & become short-sided.  And how awesome He is to remind me in such unexpected ways – that woman was God’s reminder of His faithfulness – My world opened up yesterday, when I shifted my focus back to the ONE it deserves to be set upon – I found God’s blessings for me at the meat market!

Will Power & Witty Retorts: Lessons learned While Using My Fistula

Today marks my eleventh week doing Hemo with my fistula.  Eleven weeks isn’t so long – 3 months, but fistula time is actually like dog years – much longer.  100+ hours, but its not like I’m counting J  In that time I’ve had a lot of firsts and learned some surprising lessons.

For instance, today I learned two new things about myself:

1)      I cannot will my blood to clot.

My will-power didn’t work when I wished for the laundry to fold itself & didn’t stand up to the chocolate cake, I’m not sure why I thought I would do any better over my blood flow.

2)      The smell of my own blood makes me queasy.

This lesson followed on the heels of lesson one.  My chair was needed by the next person and so the nurses set me in a chair directly in front of the newest patient. Uncertain whether I was the spectator or the one-woman show – I made every effort to cut the show short – in doing so I created a major production & left a bloody mess in my wake – hence lesson two.  I’m not usually given to squeamishness, but it seems with age comes wuss-dom. 

Eleven weeks has given me time to become more comfortable in my own skin.  In the early days of my fistula I was very insecure about how others would perceive my scars.  A dear friend called me on this fear & challenged me to use my scars to share about God's work in my life.  I'm so blessed to have such honest friends, reminding me of my purpose & God's goodness!  I don't try hiding my scars anymore -- they are all mine, I've earned each one and God has taught me so much in the course of getting them.  I could, however, use some retorts for all the curious comments about -- 'it looks like it hurts' or 'what happened to you' -- I would welcome any suggestions -- my material is getting worn out :) 

Button Holes & Blessings

I’m getting button holes! 

I can only imagine the troubling thoughts my exclamation is causing for anyone reading this - some of you may even be wondering how low my social life has sunk to elicit such enthusiasm over garment slits.

I’m getting button holes – any yes I’m excited – but fear not – my sanity and social life are still intact.

Button holes are a slang term for a fistula site that is always accessed in the same spot. But I’m getting ahead of myself – so for now, just know – button holes are good.

Since my last post life has been eventful – Here’s the condensed version with journaling snippets of most momentous events:

·        March 29^th – First day having my fistula stuck with one 17 gauge needle.                                        My anxiety over this event was actually pretty anti-climactic – I attribute this to three things; my overactive imagination, the nurse’s skill; and God’s grace. It’s a good thing too, because if day one had been anything like day two I may have never gone back! 

·        April 17^th – First day with 2 needles accessing my fistula.                                                                        Actually this was the first day successfully accessing my fistula with the second needle.

·        April 22^nd – Diagnosed with Shingles.                                                                                                                                                                                                                                                    

Fortunately I caught it early, so it turned out to be a mild case, but a week later I was back in the doctor’s office with hives caused by a new fabric softener.

·        April 26^th – Fistula Infiltrated.



Bruising 2 wks after infiltration.

Words can’t fully express… OUCH comes to mind– I hope to avoid a repeat performance – Infiltration occurs when the needle responsible for blood return slips out of the arterial portion of the fistula and the blood has nowhere else to go but into the surrounding tissue.  It’s extremely painful and results in a doozy of a bruise.

·        May 6^th – Fistulagram with Angioplasty.

My fistula’s infiltration was a red flag there could be some structural abnormalities with my fistula, so I had a fistulagram done.  They injected my fistula with dye & discovered 3 - 70% blockages.  They ballooned these areas to allow for greater blood flow.

 ·        May 10^th – Phone call from transplant center…

I got butterflies in my stomach when I saw the name on my Caller ID.  My heart was in my throat as I answered.  But instead of ‘the call’, it was the financial coordinator calling to tell me that my new COBRA insurer considered their transplant center out-of-network.  As my heart plummeted to my buns he explained that my current insurance policy would cover little to no part of a transplant.  In a nutshell – No coverage, no kidney.

Another barrier in my quest for a kidney, oh, and did I mention – just a week earlier I and a living donor had been tested for paired donor exchange? 

If you’ve followed my blog, you know this isn’t the first time things haven’t gone as I thought they should – My initial go-to reactions have been panic, tantrums and anger (sometimes all three – I’m a real treat, huh?) – but over the last three years God has used these experiences to mold me and teach me lessons about patience (careful what you ask for), purpose & God’s perfect timing.  So if anything, the last three years has been preparing me for this news.  Instead of reaching for my ‘go-to’ hysterics I felt oddly calm – I’m still working on a solution, but in the meantime I’m choosing to rely on what I believe, or rather in whom I believe – My God wasn’t surprised by this news or any other news that I saw as roadblocks. I believe that Christ has a perfect plan for my life and if a kidney is part of that plan, it will happen at the right time.  So in the meantime I am doing my part to iron out the man-made wrinkles.

·        May 24^th – First day using 15 gauge needles, button holes begin.

Each time I thought of needles this size I envisioned knitting needles – My imagination was far more disturbing than the real thing, thank the Lord!  I’d like to tell you I faced those harpoons with bravery… I would also like a pony…. My help comes from the Lord, but right now my courage is chemically-induced – Lidocaine cream is this girl’s new best friend!

And that brings me back to the present – BUTTON HOLES!  It signifies that my fistula is working well and when the holes are well-established a tract will form, similar to an ear piercing. It makes it easier to access and less painful.  Having button holes also means I can get my IJ catheter out soon – no more IJ means less risk for infection and I can take real showers and go swimming – all the incentives which make a fistula more appealing.

The last few months I’ve had the opportunity to put some of the lessons God has been teaching me into practice. I continue to get new opportunities to trust God & wait for His perfect timing.  In grasping opportunities, I’ve also opened myself up to unimaginable blessings!

When choosing a needle always pick the small one

Today I've had my fistula for 7 weeks.  Yesterday I had an appointment with the vascular doc to check for maturity (of the fistula, not my own).  The report was very encouraging, the fistula is large, with good blood flow and no apparent strictures.  Praise the Lord!   On his way out the door the doc said they could start using one 'small' needle.  Really?  Did he really need to say 'small', as iff I won't be asking for the smallest of the harpoons :) 
So this is a great answer to my prayers and the start of a whole new prayer!  I admit it, I'm nervous about the first day using my fistula.  The rational me thinks, "how bad can it be, I've had numerous encounters with needles and lived to tell about it -- this will be a breeze."  My inner big-baby wails, "I don't wanna get stuck!"  And the nurse in me says, "They use WHAT gauge needle?" 
So now, not only am I going to get stuck in my fistula for the first time, but now I have multiple inner-voices vying for my attention..... I could use more prayer than I initially thought :)

Sounds like Opportunity

I've been really negligent of blogging with any kind of predictable frequency.  For the longest time my blog has been one of the only ways to share God's work in my life and the journey I've been on for the last 2+ years.  God's still working in my life, but my purpose has become clearer and shifted some.  For 31/2 hours M_W_F I have an audience that can't get away from me.  Being In-center for the third time in less than two years made me wonder if maybe God had something He wanted me to learn from the experience... three times.... doesn't speak well for my grasp of quick-learning.  It's as if my blinders have been lifted (figuratively, literally I still could hide my own Easter eggs).  The difference between this Hemo experience and the times before is night-and-day..  I'm making an effort to know the names of my 'neighbors' (surrounding chair occupants) and making conversation with my care providers.  I've had several opportunities to share with those around me what God is doing in my life and how He sustains me -- and I'm trying to live so others see Christ through me, even on my rough days.
But, just like those around me can't get away from me, likewise, I'm a sitting duck!  I felt especially trapped when I came in close proximity to a particularly noisy, immensely disconcerting chair occupant.  Moans and groans could be heard coming from the adjacent chair as steadily as a heartbeat, only to be interrupted by whining and loud protests.  As bad as I felt for my dialysis comrade, I felt worse for me.  I would often find myself praying for their relief and my own peace.  It took me a while to see the opportunity God had placed within my hearing.  God was giving me the opportuinity to pray for that person and for the care providers, to think beyond myself and for others. 

Knowledge is Power Except When It Isnt

My most current update sans the wine of my last post (I hope).

In the coming weeks I plan to get my fistula created.  A fistula is a far more permanent method of receiving dialysis – a vascular access created using my own vein & artery in my non-dominant arm.  I’ve resisted having a fistula for as long as I’ve needed to think about dialysis.  Since finding out that getting a fistula was my only option I’ve made an effort to face the music with a positive attitude and well-educated.  For the latter I decided to go straight to the source – whom better to give me the full 411 then actual patients – and it just so happens I have no short supply of such persons.  The first morning of my investigative inquiry I met an upbeat, perky gal.  I was quite optimistic as I introduced myself – I mean anyone who could be perky after a 4am chair time and hours of hemo dialysi must have great things to say about their fistula.  I launched in, asking my burning questions – ‘ does it hurt when the needles go in’  and ‘ is it painful throughout the therapy’.  I was certain she would set my mind to ease…. I was wrong.

My first clue should have been her hesitation – but well, I don’t pick up on body language like I once did.  ‘I don’t want to lie to you,’ she says.  Verbal clues I usually get…  I urged her to be completely honest.  Whoever coined the phrase ‘Honesty is the best policy’ never had to have a fistula created. 

I’ll give her points for relaying the info with a positive perky cadence – she assures me its painful – ‘ sometimes I even scream when they stick me’ – It is at this point that I am wishing for my ignorance of five minutes ago, which I decide really was bliss.

I was later reassured that this patient wasn’t the one to talk to – Uh, yeah, she makes a hard sell… already figured that out – I’m still not totally sure if she’s not the one to talk to because her experiences are not the usual patient experience, or if its just that her salesmanship needs work…  A well meaning nurse made further attempts to set my mind at ease – telling me that after a few weeks they would stop using sharp needles for access and start using dull needles.  In my experience, it’s the dull knife cut that hurts far worse than the sharp knife!    Suffice to say, my new-found knowledge might be power, but its appeal is lacking.  So in an effort to find the positive I made a Top Ten list – Perks of Having a Fistula.

10.  A fistula is far less likely of getting infected than an IJ catheter.

9. A fistula is the gold-standard of Hemo dialysis.

8. A fistula presents fewer potential complications than an IJ catheter.

 7. A fistula is a long-term option for dialysis.

6. According to my venous mapping, I have good vessels in my non-dominant arm.

5. Battle scars are hot, right?  And I’ve earned every one of mine!

4. Fistulas are created under anesthesia.

3. I have really good ‘nurses’ (aka parents)  to take care of me!

2. A fistula presents a massive target for future blood draws.

1. I can go swimming & take baths again!!!

I’m still not super excited, but it sure beats the alternative, and God has been good to bring me to a place of acceptance.  Please pray for my attitude to be pleasing to God and that I will be sensitive to His promptings and the lessons He would have me learn through this.  Please pray also that I would be brave, for I am am a little scared about the unknown (and newly known).  Thanks!

~V

This week has been rough.  I seem to have caught a raging cold  and in the words of my hemo nurse today its 'kickin' my butt'.   Today's treatment was just another issue to add to the plus column of getting a fistula.  Each time I coughed or sneezed I set off the arterial alarms, requiring a nurse to reset the machine with each outburst.  And each reset adds additional time to my treatment.  I must not have looked so great either, because I got more questions of 'you doing okay?' from nurses and techs resetting my machine.  In truth I would have loved to just burrow under the covers and slip into blissful oblivion until I was rid of this bug. 
I also got word of the final sensitivity testing -- it seems I'm on the one of the few antibiotics that isn't resistent to my abdominal infection.  I made multiple calls yesterday trying to expedite surgery for fistula creation.  I'm having to remind myself to trust God and be patient -- funny -- I've had so many opportunities to trust Christ and wait paitiently for God's timing -- and still,   it comes far less naturally then I would want.  God is good to remind me of His promises, but today is one of those days when its a little harder to remember.  But it is on these kind of days when I am restless because of leg cramps, but too tired to do anything about it that God uses others to remind me of His love -- so thankful for His faithfulness, even on my rough days!
~V

The Lord Has Brought Me to This Place... And Other Unexpected Expeditions in the New Year

December 31, 2012

               A Christ-centered faith has no room for coincidence – because I believe this, I also have to believe that the Lord has brought me to this place.  I’m in good company. All throughout the Bible heroes of faith are forged in the fires of adversity – all because God brought them to (and through) staggering events that shaped their faith.  Daniel, Shadrach, Meshach and Abednego endured enslavement before they faced their fires and hungry lions.  Coincidence?  I hardly think so.  You’ll pardon me grouping myself alongside these men of faith.  It would perhaps be far more appropriate to group myself in with the Jonahs of old, but I digress.

I’ve been pretty fixated on Paul’s letter in Corinithians describing his ‘thorn in the flesh’.  I’ve been wrestling with frustration over my bad days – using the passage as a reminder that God can use my weakness to showcase HIS strength.  It is so true – often I am guilty of taking credit where credit is so very not due – Any strength you see in me is the result of my Christ holding me up – He is my anchor.

He has brought me to a place of acceptance – He used the last few weeks to shore me up so that I could withstand today’s blow.

I’ve been battling an exit site infection for the past two months.  Some days seemed to be better and then the last few days I began to have pain along my catheter implant site.  Yesterday I noticed a raised reddened area along the catheter’s path.  Thankfully I was able to get in to see the doc today and subsequently was referred to a surgeon.  Several hours passed, a visit with the surgeon and multiple expletives later, (from him, not me) the census is - Infection at the cuff of my catheter. Apparently this is the least favorable spot for an infection (as if there were a good spot).  So, long explanation slightly shortened – the catheter must come out.

Later this week I will have the catheter surgically removed and a Hemo catheter implanted in my neck for the third time in 2 years.  I don’t understand why this had to happen – I don’t like it, but I am certain that no matter my understanding God has a purpose for me in the life I have been gifted with.  Before you write me off as a phony-balony or a saint let me just say, my attitude is a work in progress.  You can pray for me in this.  I have a few issues to work through – I have major issues with loss of control and trust.  But really it comes down to trusting God in the things in and out of my control and having an attitude that mirrors God’s peace rather than my turmoil.  If I have to go back to Hemo (and barring a miracle, Hemo awaits me) then I want to have an attitude that reflects my Lord, His love, and His peace.  It’s my own little in-center mission field – but here the natives can’t go anywhere if they don’t like what I have to say ;)  Thank you for being so faithful in your prayers!  May God richly bless you in the New Year!

~V

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The past two weeks has been a busy blur.  When last I wrote I was planning to have my peritoneal dialysis catheter removed.  In my pain-med drugged state I failed to blog the last two weeks’ events – so that is where I will pick up my story. 

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January 3, 2013

The day of surgery had finally arrived.  The surgeon had given me a 3-day antibiotic to stem the tide, but it had little effect on the ever-increasing pain at the source of the infection. I was never so glad to don a vented hospital gown in all my life!  I spent the morning regaling hospital staff with my health history, providing venous target practice for blood work and IV, and catching my OR staff off guard.  Shortly after my OR nurses began wheeling me to my awaiting surgical audience I popped the dreaded question, “Would now be a bad time to tell you I really need to pee?” Their stock still stance and stone cold countances would make any Scotland Yard Guard proud – they looked to each other and then back to me.  The tension was thick…… you could have cut it with a surgical knife.  It was then I thought I better resolve this stand-off, I mean, I make it a practice to never upset the persons who prepare my food, how much worse must it be to tick off your surgical team?  Quickly I interjected, “um, I actually don’t have any kidneys…”  No Response   ….”uh, so I can’t pee…”  My harried chariot bearers still just stared at me.  … “it was a joke.”   Well, I thought it was funny J   Apparently my audience thought otherwise, but really, they had read my chart – no kidneys equals no pee & why else was I getting a dialysis catheter?  Just keepin’ them on their toes J

The next two day’s events I relate to you via the info others have told me, because, well, I was totally out of it!   The surgery went well and I was released the same day – both of which I was very glad for, but the results of the surgery were not as good – The infection was a particularly nasty bug, which had infiltrated my peritoneum and the catheter tract.  In order to make sure the beastly infection bugs were gone and wouldn’t take up permanent residency the surgeon left the incision open.  Hmmm open incision  and Hem dialysis….. can you say Déjà vu?   It was eerily similar to my summer of 2011 – the summer I had no wishes to repeat.  I had feared this very thing happenening and had thought I would be an anxious mess.  But the Lord was so good to me, giving me peace in the circumstance I had most feared.  The real thing was far less scary then I had imagined PTL!  I would have loved to crawl under the covers and sleep my pain medicated sleep for days, but I had to be at in-center dialysis bright and early the next day.  Still in a bit of a haze at this point I was able to sleep through most of my treatment which went relatively easy.  The only thing I remember is having a curious patient wheel over to my chair and watch as I was hooked up and comment on every conversation I had with my nurse.  I think I now have a better idea how the monkeys at the zoo feel.

The next few days I had wonderful friends and family to occupy my time and provide pleasant distractions.  A routine of sorts quickly developed…  Three mornings a week I would wake to my alarm, stumble out of bed and dress in Hemo Sheik – Long sleeved V-neck shirt, elastic waist sweat pants, zip-front hoodie, and tennis shoes.  A ponytail and glasses completed my ensemble and I and my blankie could be out the door in 15 minutes flat.  My 3 ½ chair time stretches to 4 most days and then I spend the afternoon sleeping.  My nights are restless and I wake on my Hemo-free day still feeling tired and tired of tired.  Most of my treatment days have been rather uneventful – I recline in my chair after having my dual lumen catheter hooked up to concurrently drain and filter my blood and then return it back to me in a repeating cycle.  I have a TV at my disposal, but most days I try to sleep, read my bible and then drown out the noise of the center with audiobooks, music or movies.  My attitude this third time around is markedly different from last time.  My mom calls my attitude last time – ‘politely rude’.  I probably internalized a lot of my irritation and beligerance, but it was always just at the surface.  God really brought that to mind this time and  I was really convicted.  My actions and attitudes are a reflection of my relationship with my God. Trials are not a free pass for a bad attitude.  I think the following conversation probably sums this up best.  I had put in my time at dialysis and was waiting to be disconnected when a large man approached me  and began fiddling with my catheter and machine.  He looked official, but I was still a little wary.  “Soooo”, I said,  “what’s your name?”  He replied and we made polite chit chat. As he neared my catheter I tried to play it cool – “so what do you do here, are you a tech or a nurse?”  I suppose I need to work on my characterization of ‘cool’, cause he flashed me a humorous smile and wanted to know – “Why?  Do I make you nervous?”  I gave him my best ‘not-nervous’ look, but waited for an answer – he soon told me he was an RN and I began to relax, knowing I was in capable hands.  We continued talking.  He hadn’t seen me before so he was questioning my dialysis history.  I gave hime the cliffs version and then he wanted to know how I dealt with it all and who my support team was.  I had the opportunity to share how wonderful my parents have been but even more how faithful and true my Heavenly Father has been to sustain me through each event in my life.  His response wasn’t quite what I expected,  “Wow, so its no big deal then?”  I think I may have snorted in an unladylike fashion and then proceeded to tell him that it was sooo a big deal, but it was the Lord who helped me through these big deals and allowed me to learn and my faith to grow through these times.

The me of a year ago wouldn’t have been so convicing if she’d said the same thing – that me was closed off, prickly and counting the days until her in-center release.  Today’s me still has some of the old hang-ups – I still don’t like Hemo – but I am making strides to allow God to use me where I am, even if that means while I’m sitting in my grey pleather recliner.

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It seemed as though requests for my presence were in high demand.  I off-set my in-center days with visits to multiple doctors and specialists.  I saw the infection specialist and was started on two antibiotics, and then I followed-up with my surgeon.  He managed to keep his colorful expletives in check on this visit, but while he was happy with the healing progress of the incision site, he was very honest about his concern over the potential virulence of the infection.  Because of the bug’s nature he made it clear that he would not even attempt to place another PD catheter any sooner than 6-8 months from now.  He felt the infection was in-check and under control but was unwilling to consider using any man-made products to create an access site.  This left a fistula creation to be the only option.

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January 17, 2013

Today I have the venous mapping done.  This is the first step in the journey to getting a fistula created.  The fistula is really the gold-standard of dialysis.  It is created from the person’s own artery and vein.  The artery is stitched to the vein so that the artery’s higher volume of blood is directed through the vein.  This higher volume and higher pressure are intended to increase the size of the vein, over time creating a useable fistula.  In all my time doing dialysis I have always lamented the use of a fistula.  They are a curiosity, but far from pretty – often you’ll hear  people give them the moniker of “hose”.    Another rthing that makes them seem less-than-desirable is the fact that two needle sticks are required whith each treatment – ick!  So there’s my hang-ups, but I’ve been making a conscious effort to find positives to outweigh the ick.  I’ve found several… I would be able to have my IJ catheter removed, thus eliminating one more avenue of infection – big plus!  Sans IJ and PD catheters I would be able to resume showering and swimming – Major plusses!   A fistula, while not pretty, is necessary – my own badge of honor! 

The venous mapping was relatively easy, an IV in each wrist allowed the nurse to inject dye through my veins in each arm and X-ray captured the pics to reveal what shape my vessels were in.  Thankfullly my non-dominant arm possessed the most favorable vessels for use – Thank you Jesus!

The staff were pleasant and really helpful at explaining what I could expect with the fistula – and I was such a good girl that I got juice and crackers before I left J

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January 21, 2013

My incision has healed enough that I no longer require packing and I am able to do dressing care by my self.  I have finally returned home and am trying to find my new normal.  I had kind of a rough day of treatment, battling leg cramps for half of my treatment and the rest of the day.  It was strange coming home – it was the first time I’ve returned to my home while still doing Hemo.  In the past I would stay with my caretakers until I was back on PD – It became very real to me today – This is my life, not just a seg-way to something else.

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If you’ve made it to this point in my musings  you deserve my congratulations!    The New Year has been flush with activity and changes, but through it all the Lord has been ever faithful in providing me with the necessary strength to continue on.  He has blessed me with parents and extended family who care for me and encourage me – they remind me of the Lord’s promises when I am too tired to read them for myself.  The Lord has blessed me with a league of prayer-warriors – friends, family and even strangers who care enough to bring my needs before the Great Physician and Healer.  I am so blessed and humbled by the blessings God has placed in my life. 

I would appreciate continued prayers for the full eradication of this infection.  I got the call today that I’m on the only antibiotic that isn’t resistant to this bug.  Please pray also for me as I begin the process of getting my fistula created, that it will work well and that I would not have difficulty adjusting to it.  Right now I think the unknown and my imaginings of what it might be like are far worse than what I’m in store for.  Thanks again for your friendship and faithful prayers!

~ Vanessa