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

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