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/