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