unexpected turn of events

just an update -- more to follow as I am near internet and knoww more.  Infection has overtaken my dialysis catheter so that it is necessary to have it removed and begin HEMO.  Surgery is Thursday.  Please pray that all will go as God wills and that I would have a peace and attitude of acceptance. thanks in advance and a very happy and blessed New Year to all.  with gratitude, Vanessa

Most years its easy to get swept up in the Christmas rush and euphoria of the Christmas season. But tragedy, loss and sorrow don't take snow days and I find my heart is heavy. But Christmas is the perfect time to be reminded that Christ is our hope in the midst of a sinful and chaotic world. His birth wasn't just a cute Nativity place-setting, but the beginning of a life that would eventually take my place (and yours) by dying on a cross and rising again! Now that is some gift! Merry Christmas!

Update

I thought it was about time I posted an update to my last blog.  I seem to have figured out the culprit of my severe nausea and it has improved nearly 100% -- PTL! 

I also am ultra-thankful to share with you that I have officially been placed on the national transplant wait list!  This is a huge answer to prayer!  I would ask that you would continue to pray that God would supply the right kidney in His timing.

Now that I have the clearance it just a matter of finding a deceased donor match or a living donor interested in paired-organ donation. 

If there is anyone still interested in donation you can get more info and/or start the testing process by talking to the living donor coordinator -- Susan Young, her number is 405-949-3816 or toll free 888-949-3816.

Before I sign off for the night I wanted to mention one other praise/prayer request.  I’ve been having some issues with my dialysis catheter exit site – mainly its just been an irritation, but in the last week its really become tender with other visible signs of concern.  I went in today to have it checked and had it cultured and started an antibiotic.  I think I caught it pretty early – Praise God!  I would appreciate your prayers for my wisdom in taking care of it and that it would heal quickly of all infection.  Thanks for your continued prayers!

--V

The past two weeks have been physically taxing.  At my last dr’s visit several of my labs had shown less-than-favorable levels so some of my medications were increased to compensate for my body’s inability to maintain healthy levels.  My hemoglobin had dropped to 8 and my PTH was skyrocketing.  The med changes seemed like an easy fix… turns out, not so easy.

Along with the med change I made the personal commitment to make a physical effort to get healthier.  I joined a gym and got an accountability partner.  The first day I sat outside the fitness center – I remember seeing a little old lady wrestle with the front door and glibly comment – ‘ Just let me do better than her’.   15 minutes later – that little old lady was kickin’ my behind.

Day two I made it through my circuit, but when I began feeling dizzy I took my blood pressure – the buzzing in my ears was a pretty good indicator that my blood pressure was low, but I wasn’t prepared to see a systolic number of less than 50.  The exercise isn’t the problem, it’s the fluid shifts that threw me off my ‘game’ HA!  This girl doesn’t just glow – I sweat, which results in a loss of fluid I can’t seem to compensate for, especially lately with these new med changes wreaking havoc on my system.

Since my last dr’s visit I’ve lost nearly 15 lbs (most of that fluid).  Nausea seems to be my constant companion, its kinda reminiscent of my hemo days.  I’m experimenting with how I take my meds, how much I take and when I take them.  Its frustrating to feel this way, but I also know that it’s a process.  It reminds me of my early days after transplant – I couldn’t keep much down than either, but with time and patience I figured out what I could tolerate.

Last night I was really discouraged after I tossed my cookies.  But the Lord used this verse to encourage me today -- Psalm 73:26  ‘My flesh and my heart may fail, but God is the strength of my heart and my portion forever.’  No matter the outcome of my trial & error, the Lord ultimately is in control and He sustains me no matter the circumstances.  I am also so very thankful for the encouragement and prayers of the many friends and family I have.  I am intensely grateful for the faithfulness of God & the faithfulness of the ones who care enough to lift me up to the Great Physician!

~V

Shifting Focus

A blog is an excellent outlet.  I love how it helps me to make sense of my thoughts.  My natural inclination is to ignore or drown out emotion-charged ideas, but blogging is a cheap form of therapy.  It gives me such pleasure as my overwhelming thoughts become words, that become ideas that finally come together to make sense.

I’ve held off blogging because I was waiting for something interesting to write about.  While I love my life and love to write, there are just some things not worth writing about.  I probably could have kept on waiting, but I’ve had this thought that continues to resonate within me.  Its not a new topic, in fact, its one I’m sure I’ve mentioned before – Trust. 

Whom do I put my trust in?  If you were to ask me this I wouldn’t have to think about it, my resounding answer would be ‘Christ’.  In fact, a few weeks ago I nearly blogged about the amazing place I was at in my walk with Christ – Isn’t it so fantastic how good it feels to be in step with Christ – it feels so good to feel good? 

A well-intentioned friend messaged me one night asking me how I was doing – I told them how very content I was waiting on Christ and doing my best to use this unique time in my life to serve Him – this friend asked me if it was difficult to be patient – My response – ‘No’. 

A lot of you know how very long its taken me to get to a point of acceptance and even patience.  There was a time when I nearly swore off the idea of ever asking God for patience, because it seemed He was in the habit of giving me far more opportunities to use it than I cared for.  But in that instant messaging moment I was genuine in my contentment.  Too bad it didn’t last….

Blogging has the distinct advantage of allowing people to see only what you want them to, a window to your ‘edited’ soul.  It would be far more flattering to leave out my struggles, but its like lying about your weight on your driver’s license – it may boost your ego, but really, who are you foolin’?

Two minutes.   That’s the amount of time it to for me to topple from my trust nirvana to wallow in impatience.  One innocent comment made by my IM buddy had me rethinking my lofty proclamations.  Its so utterly revealing how weak I am, when something rocks my focus.  Foundationally I know that God is in control and that He is worthy of my trust, but it all goes back to my desire for control.  I want what I want and I want it now!  There’s a song I loved as a child, sums my feelings up pretty well –

               I can’t wait to have patience,

               because patience is a wonderful thing

               Hurry up, let me have it, gotta get it know

               I want it more than anything

               This has taken long enough, give me some of that patience stuff

               I can’t wait to have patience – hurry up, hurry up, HUR_RY UP!

But God is gracious and thankfully He is patient with me.  He continues to place opportunities in my life for me to flex my faith and to trust Him.  Trusting God isn’t a part time gig --  He is constant, so it stands to reason that  my trust in Him should be constant too.  It’s a work in progress – I struggle with anxiety and I had a major flare up last night.  My exit site is having some problems and all those emotions of last summer’s ordeal overwhelmed me.  My focus shifted from Christ and I wrestled with the possibilities of what could be.  It was only when I placed my focus back on Christ that He calmed my fears.  Trust isn’t ignoring your problems, but rather looking to the one who can solve them.  I am so thankful for promises like Philippians 4:6-7  ‘Be anxious for nothing, but in everything with prayer and petition with thanksgiving, let your requests be made known unto God and the peace that passes all understanding will guard your hearts and minds through Christ Jesus.’ And Isaiah 41:10 ‘So do not fear, for I am with you;

    do not be dismayed, for I am your God.

I will strengthen you and help you;

    I will uphold you with my righteous right hand.’   

If you’re struggling with fear – shift your focus – trust the ONE who is greater than all your fears!

~V

Far be it from me to toot my own horn, but I like to think that I am a person with reasonable intelligence (this statement is not retorical).  This leaves me questioning why I am so very slow to learn certain lessons.

Keeping my High Maintenancity on the Down Low

High Maintenance.

For the life of me I can’t think of a time when the term ‘high maintenance’ was used as a glowing recommendation.  I’d never leap at a chance to buy a house with that moniker (ranch-style money pit, high maintenance time-sucker with 2 br and 1 bath hardly screams –‘buy me’); Nor would I be overly eager to answer an e-harmony post that read ‘ tall, dark and high maintenance’.  Perhaps I’ve an unfair bias to the term, but I tend to distance myself from all things hinting of high maintenance.

So you can imagine my horror, when today while visiting the transplant center I found out that I am viewed by others as *GASP**** H-i-g-h maintenance – well scratch my ears and call me Sparky!  I can’t even begin to tell you what a shock this was….. okay, so, not so shocking. I mean, I do live with myself.  No news flash, but today I saw myself through others’ eyes – highlighting the high maitenancity of Me.

Its concerning to me to think that others, like myself, might be walking around, unaware that they too are high maintenance.  I’ve put together a list of signs and symptoms to look for – they say admittance is the first step……

·        When traveling, a U-Haul trailer is necessary to carry your ‘over-night’ case

·        To avoid such overnight ventures, you rise at 3 AM to arrive on time to an 8 AM appointment.

·        Health questionnaires and doctor interviews resemble open-book tests because you have to refer to your ‘notes’. 

·        Finding an unscarred space on your abdomen (to place a new incision) is termed by the doctors ‘lucky’.

·        Being termed ‘complicated’ multiple times in doctor’s dictation.

·        And finally, and perhaps my favorite way to tell if you’re high maintenance …. When another physician remarks that if they were a primary care doc and saw me come in the front door, they’d walk out the back.

·        Oh, and I suppose if you wanna split hairs -- needing a kidney might fall into the high-maintenance category…..

So, yeah, I admit it, I am a high maintenance kinda gal, but lets keep that between you and me.  If word got out I might have to start meeting my doctors at the emergency exits.

Dry Eyes & Ditch Weed - Navigating the Obstacles of Transplant Center Acceptance

I had my first transplant center visit this last week.  The first hurdle in the transplant acceptance obstacle course was an orientation offered bi-monthly by the transplant center and open to anyone seeking a kidney and/or pancreas transplant.  Now, I know what your thinking – kidney AND pancreas – is this a BOGO?  Raised to hold dear to the mantra ‘shop ‘til you drop’ and ‘SALE’, my heart quickened at the possibility of a great deal. I was certain I had stumbled across the find of a lifetime!  But apparently they’re pretty stringent about their ‘deals’ and there’s no super-shopper’s discount.  But I digress….  The room was packed with potential candidates and their support persons.  It’s strange to know you’re a part of the majority and yet still in the minority.  We might all be Medicare subscribers, but if I had to guess I’d say I was one of the few not sporting an AARP card.

As the numbers on my digital clock grew larger, so did the stack of paper work I had to fill out.  I learned a lot though.  For instance, I now know that in order to be eligible for a transplant, at this particular center, it is okay to be crazy (their descriptive term, not mine), but the ‘crazies’ must have a doctor’s note and be medicated.  However, your eligibility is quickly revoked if said medication consists of tobacco or ditch weed.  The latter should be no problem – I’ve sworn off all poppy seed muffins for the foreseeable future, and depending on whom you ask (me, myself, or I), the former should present no impediments either. But for others in the class… their questions lead me to believe their recreational activity of choice isn’t bowling.

It was all so very enlightening. 

I often hear people musing about those manufacturers’ commercials peddling un-pronounceable prescription drugs.  The drug benefits are shadowed by the list of side effects hastily offered in a whispered sound byte.  The wonder drug promotes relief from dry eyes but may cause blurred vision, tearing, blindness, dry mouth, diarrhea and death.  But you’ll go out with moist eyes.  Seems like a totally unrealistic trade-off, the risks far surpassing the benefits, right? I suppose it depends on who you ask – the me from 15 years ago would have been the first to turn down the miracle med with side effects a mile wide.  Bbut the me now, and I would wager a fare percentage of the people in that orientation room would look at it a little differently.  Risks and benefits in the life of a chronically ill individual is a tight-wire act.  I think of it a little like skydiving – stepping off a plane a mile or so in the air isn’t for the faint of heart – those that jump take the necessary precautions, but in the end they are placing their faith in swatch of fabric.  If all goes well, they get the rush of a lifetime and a great story to tell. If all does not go as planned, well, dry eyes will be the least of their worries.  Similarly, the decision to be transplanted doesn’t come lightly – For me, the potential benefits far outweigh the risk, I’ve studied up and will take all the precautions I can, but unlike the skydiver, I’m placing my faith in a God that is far more reliable than anything this world can offer.

This Is As Direct As I Get

I’ve drafted this blog so many times I’ve lost count.  I’ve rolled it around in my mind over and over, but each time I put it to paper, the white spaces mock me.  I even thought to elicit the guidance of my trusty copy of ‘How To Say It’, but I’m fairly certain that nowhere among its contents lie the answers I am looking for.   Two challenges keep echoing through my thoughts, both issued by loving friends.  The first, be more direct.  The second, embrace the person God’s created me to be.

The first challenge was born of a conversation I had with a bestie.  We were discussing my dating life (or lack there-of) and the intricacies of non-verbal communication. She declared that I needed to be more direct with people about my optical challenges so that others would know to be more verbal in my presence.  It was during this conversation that her grandma chimed in with her two-cents, ‘Just wink at the guys’, she said – citing that that was her method of ensnaring the heart of her beloved so many years before.  Winking, hmm, could it be as easy as that?  I did step on the toes of a guy that held the door for me at Applebees – I wonder if that could count as being more direct? Oh, why can’t body language come with subtext?

This same friend confronted me about my directness in relation to my search for a kidney. It was in mentioning this to my Dad, that he issued my second challenge – Don’t shrink from the person God has made you to be, embrace it.  I lamely argued that God made me passive and un-eager to ask for help – he didn’t buy it….

So…. This is me being more direct – I need a kidney transplant. I am really blessed to be able to maintain reasonable health with dialysis and I have more good days, than bad ones.  But, the facts remain the same – dialysis is only a short-term solution, a 63 hour/week means of life-support.  At the end  of the day I still need a transplant. 

Putting this to paper, I have this sense of earnest and excitement to see what God has in store for me.  I haven’t been overly direct in my prayers as of late. Despite what you might think, I don’t pray for a kidney.  My greatest desire is healing – it would be so much less…. Inconvenient for myself and everyone involved.  I trust that one day I will be healed, whether God chooses for that to be here or in heaven I eagerly await that day, but for right now, that’s not part of God’s perfect plan for my life.  So my newest prayer if for God’s will (and that I will be accepting of it).  If that’s a kidney, great, if it isn’t, that’s okay too.  I’m reminded of a message I recently heard, it was in response to the movie theatre massacre.  The trials of life can act as catalysts to draw us closer to the Lord.  A willing spirit in the midst of turmoil can be as malleable as precious metal under fire. God can use these experiences to mold us into the person we are meant to be.  Living through fiery trials isn’t fun, but if we allow God to shape us, we’ll emerge beautifully refined, rather than scorched!

·        1 Peter 4:12 – Beloved, do not think it is strange concerning the fiery trial which is to try you, as though some strange thing happened to you, but rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy.

·        1 Peter 1:6,7 -  In this you greatly rejoice, though now for a little while, I fneed be, you have been grieved by various trials, that the genuiness of your faith, being much more precious than gold that perishes, though it is tested by fire may be found to praise, honor and glory at the revelation of Jesus Christ.

·        James 1:2,3 – Count it all joy when you fall into various trials, knowing that the testing of your faith produces patience.

That’s the best I can do at being direct.  If you have interest in being a kidney donor or you just would like more info about the process you can contact me via blog comments or email : joyful.ness@live.com  For those of you who’ve been tested in the past, but were not a match, but would be interested in more info about paired-donor exchange (kidney chains), I can also get you more info. 

What did I tell you.... there really is no 'Asking for Organs' chapter in my 'How to Say It' book, look for that in the re-vised edition (I'm sure).

Oh and if you know of any eligible guys….. I think I would be really good at blind dates ;)

~As always, V

Shocks, Scars and All-You-Can Eat Ice Cream: Exploring the lessons learned during the longest summer EVER

One year ago this week marked the beginning of a stinging blow to my physical & spiritual health.  It’s a blow that would take me months to recover from.

Had things gone as I planned, I would be celebrating my one year kidney birthday.  But plans change and on the 20^th of June 2011 mine changed in a big way.

The weekend prior to my transplant I had begun the dialysis countdown. For those of you unfamiliar with this, think of countdown to the last day of school, except instead of looking forward to summer vacation, I was looking forward to the rest of my life dialysis free.  I was being extra careful connecting my treatment bags, even going so far as to scrap a set-up on more than one occasion just to make sure I wasn’t contaminated.  I wasn’t going to let anything get in the way of this transplant.

My bags were packed, I’d bought all the anti-rejection meds, and I was already dreading my bowel prep (if you’ll remember I had a practice round when the transplant was re-scheduled in May).   The Saturday before transplant  I began getting lower right quadrant pain and was unable to find any comfortable position.  I passed it off as nerves – I mean a transplant is a big deal – maybe with that comes big-ol butterflies that aren’t just stationed in the tummy.  My plan was to ignore, ignore, ignore – this transplant would happen!  Sunday came and I pretended the pain was better, but the small little hypochondriac within me was whispering all sorts of ill-fated diagnoses.  When I started running a fever I chalked it up to ummm… excitement, sure -  big butterflies and hyper-excitability.  But if any of you have ever suffered from hypochondria you know its whiny and persistent as a fat kid on a diet.

I finally dialed my docs on call & gave them my assessment of my condition – sans the butterfly diagnoses.   As I’d feared, they wanted to see me in the office.  Had the pain been more tolerable I probably would have called and cancelled the appointment the next day, but  later on Monday, June 20^th 2011 I consulted with my transplant surgeon.  My WBC’s were scarily high, indicating an unknown infection and all tests were inconclusive.  It was at that point all hope of having my transplant the following day went out the window.  The disappointment was brutal, kind of like ordering steak and getting the tofu burger or no prize at the bottom of the cereal box – totally disappointing.  

The events that followed led to the longest summer of my life. 

I had exploratory surgery, which resulted in the removal of my remaining transplanted kidney, my peritoneal catheter and my appendix (A real bargain really, 3 surgeries for the price of one anesthetic).  I woke up several hours after surgery minus a few organs, not at all the transplant scenario I had been planning.  

My hospital recovery went smoothly and I dazzled doctors and staff alike with my aptitude for hallway laps and the breezy-bum shuffle.  

Unfortunately once home my progress subsided.  One week post-op I went to my surgeon and he confirmed my suspicions – my incision was infected.

This is where things get a little messy and not for the faint of heart – Infection is bad, but I was sincerely hoping for a script for kick-butt antibiotics, an encouraging word, and a suggestion to eat lots of ice cream – a girl can dream can’t she?  By the end of the visit I would have settled for even just a kick-in-the-butt.  Ouch, doesn’t even begin to describe the events of that clinic visit.  Taking his gloved finger, my surgeon ‘unzipped’ my incision manually and without any anesthetics, pain relievers or ice cream!   He instructed me on wound care, I tried to regroup and regain my composure and I left the office.  I returned a week later with cautious optimism, for all reports from my wound care provider were positive.  This visit proved to be far worse than the first – some healing had taken place, but not in the manner pleasing to my surgeon.  It’s a little complicated to describe, but wounds have to heal from the bottom up, rather than the top down, otherwise, unwanted bacteria or void spaces an occur underthe healed tissue – apparently it can cause many many adverse issues, including muscle necrosis –bad news bears!  My tissue had begun to heal on top, not the bottom.  So, again with the finger and then the hand – by the time he was satisfied that none of my muscle was involved , his hand was petting my pancreas – okay, not really, but his hand was in my open incison tugging on my innards – and I was non-anesthetized and totally FREAKED-OUT!  I’ve had a few procedures since and I always remind myself when I get nervous – nothing can be worse than having a hand inside my stomach – I sure hope I’m never proved wrong!

The following weeks proved less traumatic, but frustrating.  I required 2-4 dressing changes a day and later toted around a wound vac for several more weeks.

In July, during one of my tri-weekly hemodialysis therapies I began to feel an odd sensation in my chest, events get blurry for the next few minutes, but I’m told I called for a nurse, stopped breathing and then required defibrillation.  I required further defibrillation upon my arrival to the ER and was told in no uncertain terms by my ER doc that I’d had a heart attack.  Following a heart catheterization this diagnosis was scrapped and after several days in the ICU the conclusion was reached that my electrolytes were severely unbalanced.

I can categorically tell you that none of the above events were plugged into my ‘To Do’ list.  And while I’ve learned a lot from my entirely-too-long summer, I wouldn’t wish to go back, ever!

So where am I going with all this?  I haven’t rehashed last year’s events just for the sake of boring anyone that reads this to tears.  Actually, I’ve been doing a lot of self-reflection today.  Its easy to get lulled into a false sense of security when things are going smoothly.  But life’s events, along with my most recent upheaval have reminded me of a few things.  I hope you’ll bear with my ponderings.

·        Life might be like a box of chocolates, but even those horrid jelly-fruit filled ones have a little something sweet about them – ie. – Life is a gift, even in the midst of sticky situations God has gifted us with life, how we live it and how we respond to the good, the bad and the jelly-fruit filling are all up to us.   I haven’t always had the best response to my situations.  Following my death-defying act in July I had awful night terrors and struggled with my feelings towards life and God.  I didn’t know how to pray.  It was during that time of tumult that God used the prayers of others and the persistent encouragement (not always appreciated, but persistent) of my family to shower me with love.  God never left my side and even in my disappointment, fatigue and pain, He continued to remind me of His faithfulness to me.  It is in the darkness that his light truly shines the brightest, and eventually, my physical body healed as well as my spiritual.

·        Life isn’t just about the journey, it’s about the pitstops along the way – I think so often we become so very fixated on one thing in our lives.  The worries or plans for our future, or even become bogged down my the mire of past regrets.  In doing this we lose out on the present.  I once heard a preacher say that the one gift God has gifted  each one of us with equally is time.  Its true, my 24 hours is no less or greater than yours, but how I use it now that’s what sets us apart.  I often get caught up in the whens….. when I get transplanted I’ll…  when I have more energy I’ll…… when I’m a super model I’ll… oops, ahem, I digress --- but what about right now?  The quality of my life may improve if and when I receive a transplant, but what if that doesn’t happen, what if does?  How I live my life right now and the present are all I am promised and after last summer it is increasingly clear that there are no guarantees.  I am making it my ambition to live now as best I can and to God’s pleasure and glory.  If I have the blessing of another kidney, I will do my best to live with gratitude and to His glory still.  I guess what I’m trying to say is that for me, living a God-pleasing life shouldn’t be influenced by my circumstances – the secret to un-wavering contentment is revealed in Philippians 13 – its letting God take the reins and trusting in the truth of Romans 8:28.

·        Romans 8:28

 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

·        Philippians 4:11-13 

I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through him who gives me strength.

·        Finally, and this one’s probably the lesson I continually have to be reminded of… My best-laid plans…. pale in comparison to the plans God has for me. (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.)  This one is fairly self-explanatory and scripture aside, perhaps Carrie Underwood says it best – ‘ Jesus take the wheel’.  So if its absolutely necessary to plan, plan to be amazed by how God works, our wildest imaginings can’t prepare us for how He’ll work things out.

I wasn’t able to celebrate the one year anniversary of a transplant today (and I’m still waiting for someone to recommend an all-i-can-eat ice cream diet), but I am thanking God for how He uses life’s disappointments, obstacles and unexpected events to refine me, bless me with friendships and remind me of His steadfast love and never-changing faithfulness.  May He surprise and dazzle you with His awesomeness!

God Bless,

~V

My life's journey has it's own road map :)  Scars are proof that wounds do heal!

When One Door Closes.... Find a Crowbar

Have you ever heard it – that resounding echo of a slamming door that sends tremors through your teeth?  Within that sound lays a harsh finality.  Yesterday’s phone call and subsequent message sent reverberations of a slamming door within my consciousness as real as if the had been slammed in my face.

Monday dawned bright and clear on the heels of a refreshing weekend.  While most people dread Mondays, I see them as a wondrous possibility – a blank canvas, unmarred and full of possibilities.  It was on this day I had promised myself that I would begin the laborious task of finding a new transplant center.  I have relied on God’s guidance for many of life’s most pressing issues.  Where to go to school, what job to take, where to move…  Still I have a lot to learn about seeking God’s will and guidance in my life.  So often, I wish that God would take up sky-writing or better yet text me the right answer.  I’ve been dragging my feet to some degree in the hopes that the transplant center ‘debacle’ would resolve itself and no new center would need to be found, that or God would give me an audible direction – ‘go forth to…’    Well, from what I can tell the skies were clear of any pertinent messages, though I thought I saw a bunny riding a bicycle.  I continue to stay safely within my texting limit and no heavenly audible prompts have spurred my decisions.  But did you know that God can use obstacles as answers?  And in the echo of a slamming door can be the whisper of clarity.

Yesterday’s call was to inform me that the suspension of the transplant program will now be indefinite.  With recent events both transplant surgeons have decided to leave the program, one choosing retirement and the other finding employment elsewhere.  My heart is saddened at these events.  Having spent my adulthood under the care of these physicians, not to mention countless surgeries/procedures – I have developed a trust and care and mutual respect for them – I am sorry this is the way they had to end their time there.  But with this news comes the distinct clarity that going elsewhere is necessary.  So with new direction I have begun the process of getting referrals to two other dialysis centers.  As of late I have taken to reminding myself that none of the recent events have surprised my God, nor does He worry about what to do next or where I should go—He doesn’t worry about any of the myriad list of things I begin to become bogged down by when I take my eyes off of God and try to choreograph the events of my life.  How much better when I let the master director who knows the entire plot of my life story take the lead. 

Again I am learning a lesson of patience.  Oh, I know, I’m sure that I bragged of my mastery of this some time ago in a blog far away, but again, God is reminding me that His timing is never early, nor is it ever late, and rarely is it at the time I would have it, but it is always perfect and always on time!   You might pray for my continued patience, that I wouldn’t become harried or rushed or anxious in the coming weeks or months of this process of getting established with a new center.  I am struggling against an urgency to get the process done so I can participate in a paired organ exchange, but again, God’s timing – I desire to be in His will and in His perfect time. 

God bless

~V

Romans 12:12

 Be joyful in hope, patient in affliction, faithful in prayer.

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.

I think, ,therefore I....

“It’s what you learn after you know it all that counts.” ~ Harry S Truman 

“The more I learn, the less I know.” ~Socrates

“My brain hurts.” ~ Vanessa

While far less profound, I believe the sentiment is spot on.  My brain does hurt. 

When I last blogged, my transplant list status had dropped to status 7 – meaning I am getting credit for putting in my time, but with the transplant center I’ve established with taking a hiatus from transplanting, I’m non-transplantable (not to be confused with non-transferable).  Learning this news via voice mail, I had few details and even fewer answers to all my questions.  Many of you may have read the linked article describing the events surrounding the ‘break’.  

Since then I have talked with a transplant coordinator, nephrologist, 2 receptionists (not as helpful), a pre-transplant nurse, a dialysis nurse and a social worker – all in an effort to get the scoop and find out what my new course of action will be.  Oh, and in between all that, and arguably the most productive and important action of all I’ve been consulting with the Great Physician to ascertain His guidance for my course.

Here’s what I know – the transplant center became alerted when 4 of their patients died within a short time of one another.  Initial reviews look like the deaths are unrelated or follow any specific trends – it is quite possible it could be totally unrelated.  But, erring on the side of caution, the center has shut down all transplant related activities to conduct a survey to examine their practice and if any changes are needed to the program.  Time will tell, but in the meantime I am not content to stay a status 7, especially when I am characterized as highly-sensitized, making a match more difficult.

I’ve spent the weekend and this week researching other surrounding centers.  I know could tell you the patient survival rate, graft survival rate and median wait time of multiple centers in the surrounding states.  Do you know what the difference is between 91% and 96% -- yeah I know you don’t have to be a math genius to figure this out, but is it significant?  The research says its not, but if you fall in that 4-9% its pretty significant, wouldn’t you say?

I’ve learned that there are programs in MO & OK that specialize in desensitizing immune systems of patient’s like me, but the results are still not consistently favorable.  Instead, the preferred method is paired-kidney exchanges.  If I were to have a willing donor, but they were not a match, the center would search their database of other patient-donor pairs with the same issue, find a donor that matched me who had a recipient who was a match to my donor.  Maybe you’ve heard about ‘chains’ of exchanges, I think Grey’s Anatomy had an episode depicting this practice.  This could be a way to make a living donor kidney a possibility, once again.  I have never stopped praying for this, but after nearly 15 potential donors mis-matched, my hopes weren’t high.  If anything this all is teaching me to not underestimate the AWESOMENESS of my God, and that I really don’t have control over this situation.  I can do my part to make wise, informed decisions, but ultimately He is in control and I am so glad He is!

I appreciate your continued prayers as I wade through the process of choosing a new center and wait list, for the wisdom to make these decisions and for God’s will in the procurement of a kidney.

~V
If you are interested in further information about paired-kidney exchange here's a link to news footage.   Here's a link to a video that describes paired-kidney donation.   http://www.paireddonation.org/

What doesn’t kill you, makes you… TIRED.

My internal clock is set on international time, my snooze button is broken and my operating manual is MIA. 

Insomnia is a common side effect of Kidney failure, for some reason increased toxins play havoc with the body’s ability to get large quantities of rest.  Other side effects of dialysis can interfere with sleep (i.e. dry/itchy skin, restless legs, leg cramps, and the list goes on).  While insomnia isn’t fatal, it can be hazardous to your health (and wallet).

I’ve spent the last ten months trying to sleep – some days with better results than others.  I’ve funded the pharmaceutical communities’ family vacations trying to find a quick fix.  Muscle relaxants for leg spasms resulted in a scary altered awareness and drama which required someone to watch me til the effects had worn off – UGH!  Benadryl, Tylenol PM, and Melatonin for sleep, just wound me up, just wound me up, just wound me up…  I tried the prescription sleep aids, which altered my mental clarity – no snide comments here please – but sleep continued to elude me. I’ve tried breathing exercises, warm milk, hot shower, counting backwards, counting sheep, naming sheep – the sheep fell asleep, but I did not. 

Today, I was especially tired after sleeping only three or so hours in the last two days.  I know the exhaustion is making me last rational, but I was almost positive that everything was against me getting sleep.  I’d be drifiting off when the computer mysteriously came on blairing music, a little later udo (unidentified dropping object) made a commotion falling off my bed… the list goes on. 

But aside from the mind-numbing weariness – ever played JENGA, if you’re one brick shy, the whole things goes kaput.  My psyche feels nearly this fragile – I have this rational/irrational fear that one day I’ll transpose a ID number, passcode or secret recipe and the fragile construct of my sleep-depreived brain will come crashing down.  You laugh, but it could happen – I don’t think there’s a recovery program for that. 

My inhibitions are highly inhibited.  I can’t prove it, but I think I may be a closet sleeper and a sleep-shopper – you say there’s no such thing, then how can you explain my shrinking bank account and the burgeoning stack of Golden Books?  I also have developed a bad taste in my mouth – I don’t care what people say; Sweaty feet is not a delicacy! 

Being fatigued is like inviting the 7 dwarfs to inhabit your personality - Lack of sleep makes me Grumpy and Dopey. Ocasionally extreme fatigue makes me slap-Happy, the luggage under my eyes makes me Bashful to go out in public & then I become Sneezy and need a Doc.  Is Forgetful the seventh dwarf?

It’s not all bad, in fact I’m sure there are positive things about insomnia, but I was too tired to think of any.

In all honesty, I would appreciate your prayers for my sleep – Thank you for lifting me up to the Heavenly Father who restores the worn & weary!

**** No sheep or other barnyard animals were harmed in the attempts to catch a few zzz’s. But that noisy little one better watch his wooly behind!****

~ Vanessa --- sweet dreams :)

March Update

I’d nearly forgotten how much I love putting my thoughts down on paper.  I had a nephrology visit today, and my thoughts were a jumble.  Writing helps me to lay out the facts and organize my thoughts and then if that weren’t enough… it allows me to reflect on how I feel about said facts.

There was nothing terribly earth-shattering about today’s appointment.  No screaming or crying – and I behaved too.  I did however face a fear………and turn tail & run….

There are so many conflicting pieces of advice circulating…. ‘What doesn’t kill you makes you stronger’, ‘what you don’t know won’t hurt you’, ‘your imaginings are worse than reality’…. I prefer to subscribe to the very noble line of thinking – curiosity killed the cat, er, me.’ Today, in the office I had the opportunity to ask my doctor point blank, what my chances of getting a kidney in my lifetime (which is really the best time to get one).  Oh, yes, I have a good idea about the complex nature of this topic.  My antibodies score higher than I did on my ACT, making me a more difficult match. Doctors have even hinted that I should expect a lengthy dialysis stint.  But never, have I asked point blank for the cold-hard facts.

I guess my attitude could be viewed two ways.  1. Faithless – fear driving me to adopt a naïveté  or 2. Faithful – recognizing that God doesn’t subscribe to statistics & that my antibodies don’t daunt Him

I’d like to say that the second one describes me fully – I can’t, at least not yet.  I am trusting God to work in this situation, but sometimes I struggle less with trust when I don’t have the math to cloud my judgement.]But I have

The Lord has been convicting me to be purposeful. I heard a tremendous speaker recently that spoke on the topic of missions – one thing he said really stuck with me.  God gives us blessings so that we might bless others.  Rather than simply ‘managing’ all we have (home, car, possessions, etc..) we’re to use those things to serve & bless others.  So, in an effort to be a blessing to others I am looking for opportunies to reach out.  It’s refreshing to have purpose again ( I never really lost it, just lost sight of it).  You can be praying for me that I would be courageous in serving God, whole-heartedly, so that I might be a blessing to others as so many have been to me.  May God bless you this week with many unexpected joys!

~V

Label Liabilities

It’s my fourth consecutive night of sleeplessness.  Tired has become the resounding theme in my head – I’ve counted sheep, but now I’m just counting the bags under my eyes. 

There are some perks to insomnia…. I’m fully caught up on the first two seasons of White Collar, my Hotmail inbox is super-clean & I’ve had a lot of time to think.  My most recent musings have been about labels.  There are probably places where labels aren’t important, but in my neck of the woods labels mean something.  People use labels to establish their identity.  I’ve never been a trendsetter or wear the latest “it” brand (although I did once sport a really happenin’ Cabbage Patch backpack). But this idea of labels really hit me after a dinner party I hosted a few weeks back.

Some college guys had started attending my home church.  Having been a college kid, not-so-long ago, I remember the appeal a non-cafeteria, home-cooked meal.  So, one Sunday afternoon the guys came for lunch.  Being from my alma-mater we quickly found common ground to talk about.  But it wasn’t long before the topic of my kidney failure came up.  You know, I always say, renal disease makes an excellent ice-breaker…  But if you really want to get the party started tell them you can’t see.   Are you taking notes yet?  Despite what you might think I am not in the habit of self-sabotage.  In my life normal really is only a setting on my dryer.  While a semblance of normality is important to me and I never want to scare others away with my labels, I am a sum of my parts.  I am of the opinion that it is better to be honest about the person God has created me to be, flaws & all. 

I’m pretty sure my approach has scared some people away, but those that stick around know the truth & love me in spite of it.  You know, not all labels are bad.  In fact, there’s one that I hope is blatant & bold – this label reads ‘Child of the King’  and honestly, that label is the one worth having!

--V

What a Coincidence???

The idea has been rolling around in my mind for some time.  Is there really any such thing as karma or coincidence?  If Faceook commentary is any indication then I would be compelled to say, “

Yes”.  Fortunately for all of us, my Bible tells a different story.

The terms karma & coincidence get tossed around a lot, & often the words are used synonymously.  Usually karma is used to mean – what goes around comes around and coincidence implies a happy accident. I had thought to make a comparative outline, proving my point against karma & coincidence, but debate was never my forte.  Besides – my goal isn’t to argue, but rather share how God has shown me that His will in my life is the antithesis of coincidence.  And thank God it is!

The last six months has been a veritable escalator – it has its ups & downs, is always moving, has a tendency to trip you up when you least expect it & even when you get to your destination you’re rarely where you planned on going.  (One could deduce I’ve had run-ins with the moving staircase.)  My plans have changed, expectations have been altered. But through it all I have found comfort in knowing that I’m not like the wheat chaff blowing in the wind, but rather there is purpose in each of life’s moments.

This concept became glowingly clear to me following my most recent move.  I won’t bore you with the details, except to tell you how awed I am by God’s handiwork in the big & small details.  Uncertainty had made me hesitant to uproot my life from a place I’d called home since beginning my professional career.  I was especially intimidated by the thought of starting over in a new town… new friends, new job….  I decided to put the situation in God’s hands (the best place for it to be).  I asked Him to provide a buyer and a smooth transaction if I was to sell my place.  Days later a reasonable offer was made – there it was – my answer.  Days later, the buyer got cold feet & the offer was tabled.  I was disappointed, but was trusting that it wasn’t God’s will for me to move.  I continued to pray for God’s will in the matter.  Shortly before the new year another buyer made an offer – everything went smoothly and fast – real fast.  Long story (semi) short, I closed on my new home a week after I finalized the sale of my other house.  God worked things out in ways I could never imagined.  Some might call it coincidence, but I know that only the Great God I serve would care enough about the little things wo make sure my mailbox was on the same side of the street as my house, when most are across the street.  Only my God would provide a home layout that meets my physical & medical needs better than ever before and only my God would bless me with a home that is beyond what I had dared to hope for. Coincidence?  I think not! 

Jesus explained it far better than I ever could in Matthew 10:29 --  Not one sparrow “will fall to the ground without your Father’s will”.  He’s talking about how deep His concern & care for our well-being runs.  He knows each of His creation, even down to the hairs on our heads.  He knows each of the stars by name & He knows each time a sparrow falls.  If He cares so deeply about the small things, imagine the importance He places on you & me!  I take great comfort in that, I hope you do to.  Finally, I think John Piper summed it up best when he said, “In the end, one must finally come to see that if there is a God in heaven, there is no such thing as mere coincidence, not even in the smallest affairs of life:  -- Never forget, it’s no coincidence that God loves you!

-V