The Unwritten Chapter: The Adventure's Just Begun

“May the odds be ever in your favor.”

0-2% probability…

I’m no statistician, but even I know that odds that fall within the zero to two percent bracket definitely aren’t in my favor.   I certainly wouldn’t bet the farm on it! But, let’s see, I’m more of a visual person (yeah, I know – ironic right?) so let’s just call that probability – slim to none. Like trying to squeeze into a spandex body suit two sizes too small…..on a hot and humid day – there’s a sliver hope, but in the end both that and your dignity will be damp and disappointed.

My probability of receiving a viable kidney transplant fell within those grim parameters. My chances of not getting a kidney were about as sure as a flip-flop clad cowboy walking through a feed lot going home with ‘green mud’ between his toes. No, my friends, the odds were certainly not in my favor. That’s what makes it so utterly spine-tingling, happy-dance-inducing amazing that this weekend I celebrated a statistician’s nightmare – being a statistical outlier. Through Christ’s miraculous, wonder-working power I’ve been blessed with a healthy kidney for 2 years. 

Let me break that down for you.  That’s 733 days with a wondrously healthy kidney! And while I’m no longer winning awards for best road-tripper; more frequent bathroom breaks are a weird blessing in themselves.  It means I’ve been dialysis free for 104.5 weeks. That’s nearly 1000 dialysis-free hours of life I’ve lived in the last 2 years!

And that’s just what I’ve done – Lived!

I’ve spent the last two years doing things I’ve never done before or have been unable to do. Experiencing life through the lens of renewed health and energy. I’ve traveled beyond my 2-day dialysis weekend reprieves and taken ample bathroom breaks along the way (why yes, I have peed today)!

 I’ve spent precious travel-time in cars, trains, planes, subways and boats with some of my favorite people. I’ve climbed a trail in the Teton Mountain National Park (don’t ask to see a picture, just take this blind-girl’s word for it – it was super high) and then nearly stayed there…. *cough* to take in the breathtaking beauty from such great ‘heights’ (hey I’m short and from Kansas – height is subjective).  I danced and sang with my nieces with energy to spare and no longer require maintenance naps to function (though I’m still very much pro-siesta.  And this summer, especially, has been filled with a number of firsts for me – first overseas travel without a directionally savvy travel buddy (yay for mom’s determination & friendly locals), first demolition derby, minor & major league baseball games, and first time caddying for a friend golfing.  Okay, so maybe it was my first time on a golf course that didn’t sport the title Mini in it, and maybe I only made it three holes before I gave up on turning pro caddy – in my defense, nowhere in the Caddying for Dummies guide did it warn me the clubs would be as tall as me.

I’ve been rain-soaked while standing beneath the Eiffel tower, held hands with an aged suit of armor, looked for Nessie in Loch Ness, hugged an Aussie, and braved winding stone-stairways in dark castle corridors (who needs to seek sky-diving thrills when you can walk blindly down a slippery, narrow staircase with no hand rails?).  I’ve eaten ice cream from a vending machine (oh yeah, there is such a wonder) and tried a French delicacy better left in the garden (blech!).

But my joy doesn’t hinge upon excursions, cute waiters with accents and adventuresome food odysseys. Some of my biggest blessings rest within the daily activities I can once more accomplish – teaching Sunday school, leading worship, not having to cancel plans because of adverse reactions to dialysis, sleeping through the night or going to Wal-Mart without worrying my fistula will bleed or fearing I’ll pass out if I stand to quickly after kneeling down to tie my shoes. It sounds redundant and it’s hardly an adequate description of the weighty magnitude this kidney’s had on my last 733 days, but I am indeed blessed!

I want to tell you that I never take this second gift of life for granted, that I seize each opportunity to serve the Lord with joy & purpose; that I treat each moment with the fragility, wonder and care it deserves, that I have unshakeable trust in my miracle-working God and that I’m no longer afraid of the uncertainties this life holds. Oh, how I want to tell you that – but I can’t.  Even after listing all the wondrous perks that accompany this gift of life that came in the form of a precious spare-part I still lapse into forgetfulness. To quote Dory, it seems ‘I suffer from short term remembery loss.’

Don’t get me wrong. I relish the blessing of health and restoration that God brought about in the form of a new kidney! It still gives me chills when I think of the events He orchestrated to lead me to this place; but I’m also guilty of falling back into old habits and insecurities – busyness and distractedness which pull me away from time with the Lord, impatience, a desire to control my world (and sometimes those who come within my ‘orbit’), complacency, anxiety and fear, just to name a few.  It seems I’ve had some prime opportunities to hone these skills over the past decade and yet….  Hmm, not a pretty picture is it? Almost makes you wish for that spandex analogy doesn’t it?

So, where am I going with all of this? Well, they say confession is nine-tenths of the law…. Or is that good for the soul? Yep, that’s it! What I’m getting at is this – for so long I looked at a transplant as my happy ending.  But I had it all wrong – my gift of renewed health isn’t the end of my story, but merely an exciting new chapter, yet to unfold, but not unforeseen.

Having a healthy kidney doesn’t mean I have it all together (did I hear an Amen?).  Somehow, subconsciously I had this false notion that a healthy kidney would make everything better. But I still have the same propensity for tripping over wet floor signs and introducing myself to people I’ve known my whole life.  I still have bad days – sometimes beyond my control, like side-effects secondary to my transplant and other times, self-inflicted (no matter what people say, gummy bears do not make a bruised ego better – it just prolongs the misery - when they’re gone the bruising’s no better and now you have a belly ache to boot).

By giving me a new chapter, Christ’s given me more time (and opportunities) to learn about His character and His faithfulness no matter the circumstances. And while I am His workmanship, I am still (very much) a work in progress - He’s working on my rough edges, chiseling away at my character flaws that are contrary to His character so that I might better reflect Him through my life.

I’m so grateful for the two years of health God has blessed me with, but even more than that, I’m thankful for His patience in the midst of my impatience, His gentle guidance when I’m stubbornly set on my own way, His faithfulness and mercy when I’m so prone to wander and His perfect plan for my good and His glory even when I’m so reluctant to release my controlling grip!

Thank you to all of you precious friends, family & mighty prayer warriors and encouragers out there! Those of you who’ve traveled this health journey with me and those who’ve introduced me to new experiences and accompanied me and my new kidney on big and small adventures! I’m grateful for how God has honored your prayers, friendship, love & support to sustain me in the midst of both stormy and calm seas!

6 month update

I’ve been pretty quiet on the transplant update front and I’ve been even less of a presence in the blogging world; but today marks the 6 month anniversary of receiving my new kidney. Which seems as good a time as any to post an update.

When the surging adrenaline from anxiety and excitement began to fade following my transplant and my condition stabilized to the point of being boring (doctor’s words, not mine),  I fell into a routine – my own new normal.  A complacency of sorts. Oh, don’t get me wrong, I’m still awed by God’s timing, faithfulness and care.  I’m inexpressibly grateful for His merciful and miraculous gift of a ‘new & improved me’ (new kidney, improved health); and each time I baulk at a transplant-related restriction, take my pills or wait for the results of my lab work I’m reminded of the great responsibility of stewardship I have for my life and the life of my new kidney which came as a result of another’s life being snuffed out – even in the midst of ‘mundane’ that’s a weighty realization.

 From the outside the physical evidence of my miracle is merely reflected in my face… the kind of face a mother chipmunk could love.  Aside from that I suppose I look normal, healthy even (or so people tell me – the healthy part, not the normal…).

My inward complacency began manifesting itself as a result of my own loss of focus.  I’ve felt a little like I did in college – wanting desperately to have clear understanding of what I was supposed to do with my life – and then do it.  If you ask my parents about my first year of college they might be too nice to say I drove them batty with new weekly intentions for declaring a new major.  When my advanced math & science tutors politely encouraged me to not continue on my pre-med course of action – I suggested such possibilities as Physical Therapy, Graphic Design, English Lit, Theatre Arts & Photography.  There’s a lot of pressure in trying to make such a weighty decision that can chart your life’s course for, well, life. 

And though I’m no longer agonizing over career paths in in drama (I think I’ve had my fill), photography and graphic design (what color is that & which way is up) I am once again wondering what God would have me do with my life.  My original plan was: 1) get a kidney, 2) Recover quickly, and 3) Find a job and return to the workforce.  I’ve successfully completed step 1 – for which I can take absolutely no credit – all that goes to Christ. But as for steps 2 & 3 – they are bit more complex.

My physical recovery (in terms of surgical incision) is complete.  I have more energy & stamina (though I still find myself frustrated by tiring out sooner than I’d like) & I’ve become more involved with some of the things I had to give up when I went on dialysis. It might go without saying, but it’s been a tremendous blessing.  So, while I’ve mulled over ideas of what I’m supposed to be ‘when I grow up’, I’m sure others have wondered the same thing.  Some inquiries have been subtle, others more forthright, and a few outright inquiries as to my professional ambition or assuming I’ve already returned to work. Strangely enough (and all to God’s credit) I haven’t freaked out to the same degree I did in college. I’m still searching for what path Christ is charting for me – and the unknown of it doesn’t feel like a chasm, but a gift. 

This year marks my 10 year college graduation – when I made my 10 year plan, it didn’t include losing my vision, my kidney or my job, but it also didn’t include gaining new insight into the character of God, my own personal character *wince* flaws or gaining all the incredible blessings along the way.  Mundane is dangerous – I’m guilty of coasting – being content to rest on the lessons I’ve learned during life’s storms. But for those of you who know water – you know that stagnant pools stink!   I’ve been reminded of this in the last month when my calm waters got churned up.   

In November I got results back from a donor specific antibody (DSA) test – to put it simply, the memory markers on my donor kidney, which had been suppressed with massive doses of oral & IV immune suppressants were starting to baulk at being squelched (picture, if you will ‘Whack-A-Mole’ – antibodies are the moles, drugs are the mallets) – Without adequate suppression, my body could recognize the kidney as foreign and attack – not a shiny, happy scenario.  Thankfully, there is a fairly new (and considered somewhat experimental) treatment option – IVIG infusions.  Since November my kidney function has remained stable (thank you Jesus!).  This last week I returned to my transplant center to retest the DSA levels.  Though they still were positive for antibody/cell memory/ ‘pesky moles’, they were lower – a very big blessing.  So the last days I’ve been on an all-out ‘whack-a-mole’ conquest; spending my days in an outpatient infusion center for 6+ hour increments while I received this blessed treatment – with not-so-blessed side effects.  They call it serum sickness, but it really just feels like you’ve acquired flu-like headaches and body aches, PMS-like mood-swings and weepiness and a wicked case of the munchies (thank you solumedrol).  And while that description is highly accurate & tinged with a modicum of whininess – It’s in these moments of fragility, when my axis is a little off kilter that I’m reminded of how very much I need my Savior.  I don’t particularly like the waters being stirred up, but I am so thankful that my Heavenly Father knows me so well and isn’t content for me to rest on my past spiritual growth or to grow complacent in my personal relationship with Him – He wants more for me and from me – it’s daunting and it’s humbling.  Humbling to know how very wayward I am and humbling to know that in spite of that God still loves me and desires for my deep fellowship with Him.

I’m not sure how God will continue to use the events of the past 4 years to shape my path to come, but I’m certain I could never have sketched out such a unique, painful, blessed, lesson-filled, God-inspired journey 10 years ago and look how well Christ orchestrated it all! So I have to believe that the same holds true for however many more adventures God has planned for my future.  I know I’ll continue to trip on my own desire for control, impatience and my ever-present desire to plan (yes, I’m a list maker – love those post-its), but with God’s help,  each time I trip, He’ll help me back up and each time I’ll relinquish more of me for more of Him.  Case in point – this last trip to the transplant doctor opened my eyes to some of my unrealistic expectations.  My doctor explained to me that I’m one of 17 (16 successful) transplant recipients from their center receiving desensitization therapy.  Years ago, before this new science, I wouldn’t have this kidney.  It truly is a remarkable gift and blessing that Christ placed in my life.  But because of the nature of antibodies, cell memory and other really technical stuff (to which the doctor eluded I wouldn’t understand – can’t imagine my ‘whack-a-mole’ analogy would change that opinion), along with my highly suppressed immune system (hence my germ-a-phobic tendencies, endless supply of antibacterial products and hair-trigger reaction to sneezes and coughs) God’s plan for my future may be far different from my expectations. 

The one thought I can’t get out of my head is that God has a purpose for my life – He’s used the past events to allow me to share with others of God’s faithfulness in the midst of struggles and joy.  He’s allowed me to share my story publicly, but within the span of days/weeks of sharing how God had brought me through such valleys to place me on a mountaintop of blessings – these hiccups have popped up.  First in November and again as I prepare to share my testimony with another group.  I can’t help but believe that its not a coincidence.  Life doesn’t stop when the story gets good – it ebbs and flows and in my experience, it’s the hard work getting to the blessed hilltops that yield the most blessings, lessons and communion with Christ.  I find a lot of excitement (and occasional trepidation) at knowing that God’s not done with me yet!

 

BTW: It is highly possible that some of my steroidal whininess (yes I'm sure its all steroid-induced) came through- much more than intended. While serum sickness is the pits - I'm so absolutely thankful for a healthy working kidney and the availability of treatments that make its continued health possible - so please disreguard any invites you may have received to a pity party - it's officially cancelled. To God Be the Glory for the Great Things He Has Done (and is doing)!! ;D

Memorable Milestones: Weeks 6&7 Post Transplant

Last week to celebrate my 6-week kidney anniversary I saddled up – well, actually, there was no horse and no saddle, but there were stirrups… At the time of my transplant, due to a history of obstructive uropathy and a narrowing of the donor ureter I had a ureteral stent implanted.  Apparently 6 weeks is the prime time for removal – so I spent an awkward morning in the Urologist’s office.  I’ve had the procedure done countless times, but the significant difference this time was that I was awake for all the goings-ons.  I was assured by the surgeon/urologist that the procedure was ‘well-tolerated’

His reassurance did little to stem my skepticism.  Looking for a more accurate account of what to expect I questioned the nurse getting me prepped.  ‘Well, its like getting a catheter, but A LOT deeper.  Have you ever had clamps during a well-woman visit? Yeah, it’s a little like that. But no one ever jumps off the table.’ 

Right-O, no table-jumping, small comfort - right about then I was looking for a Valium to accompany my oral antibiotic – Perhaps she (and subsequently her patients) could benefit from a crash course on ‘How Not To Freak Out Your Patients’.  I’ve been fully alert while a surgeon stuck his hand into my open abdominal wound probing for the muscle layer and didn’t leap off the table – I didn’t know it was an option.

So there I sat *cough* umm lay, alone, waiting for the numbing gel to take effect and ponder the calm reassurances I’d been given.

All told, I spent about an hour in the office and the procedure took about 2 minutes. It turned out to be anticlimactic. With the nurse’s procedural preparation I had located all my escape routes, intending to keep leaping off the table among my options.  But truly, aside from some slight discomfort, the procedure was breezy, I mean, a breeze! And even better, was the news that my bladder and ureter looked good and my lab work from the previous week was holding steady! (Yeah, a healthy kidney puts little nuisances like stent removal and stirrups into perspective) J

Not trying to top my 6-week ‘celebration’, I only planned my weekly lab draw to mark my 7-week milestone.  In the previous six weeks of weekly lab draws I’ve had to be stuck 7 times total (if you’re doing the math, that’s only one failed attempt – not bad for the girl with spindly veins). Now, after yesterday’s 7^th-week blood draw I’ve been stuck an additional 4 times.

‘It’s like trying to get blood from a turnip…’  I’ve said this a time or two, but it wasn’t until this week that I truly identified with said turnip. The first attempt was mildly successful – the lab tech successfully filled a few tubes, but with each tube she attached to(and then removed from) the vaccutainer she would alternately push and pull the needle enough that she finally dislodged it – no more blood. She dug around for awhile, trying unsuccessfully to reclaim my well-source. I finally informed her that I was wimpy and wouldn’t tolerate digging for an extended length of time.  She was really astute at taking my non-too-subtle hint and tried a different sized needle with even less success.  My no-digging policy must have been a tad-bit intimidating, because she wasn’t going to see if a third time was a charm, instead she called a second tech in - different needle, different vein, same unsuccessful outcome. Finally, they called in tech number 3, who interestingly enough, remembered me from my early lab draw days with my first transplant (Ah, the voice of at least 14 years’ experience, things were looking up). She detoured to my hand (when you only have one arm to offer, the options are limited, I was just glad they weren’t asking me to take off my shoes). Nancy and my hand proved a successful, less turnip-py avenue, as she coaxed enough blood flow for 2 more purple top tubes – YAY!

Each of the ladies were super-kind and every sympathetic – not a one made me feel guilty for having made their job more difficult, only lamenting what a tough way for me to start my morning.  It definitely wasn’t as smooth and easy as I’d like, and I’ll definitely have more sympathy for turnips in the future, but again, a healthy kidney makes such inconveniences just that – inconvenient, but not intolerable. J And it reminded me of the freedom I’ve had from dialysis (at least 6 needle sticks/wk) for 7 weeks – What an absolute blessing!  I sure miss the social aspect and ministry at dialysis, along with my friendships with the nurses, techs and fellow patients, and I can appreciate the life-maintaining treatment and many lessons God taught me through my time on dialysis, but I cannot, CAN NOT find any part of me that misses those 15 gauge needles, three hour therapies or side effects! God has blessed me so far beyond anything I could have fathomed or am deserving of – What a generous Heavenly Father!  

Psalm 100:1-5

Shout for joy to the Lord, all the earth.
²     Worship the Lord with gladness;
    come before him with joyful songs.
³ Know that the Lord is God.
    It is he who made us, and we are his^[a];
    we are his people, the sheep of his pasture.

⁴ Enter his gates with thanksgiving
    and his courts with praise;
    give thanks to him and praise his name.
⁵ For the Lord is good and his love endures forever;
    his faithfulness continues through all generations.

 

Psalm 103:1-5 

Praise the Lord, my soul;
    all my inmost being, praise his holy name.
² Praise the Lord, my soul,
    and forget not all his benefits—
³ who forgives all your sins
    and heals all your diseases,
⁴ who redeems your life from the pit
    and crowns you with love and compassion,
⁵ who satisfies your desires with good things
    so that your youth is renewed like the eagle’s.

Approaching Normal

Wow! I can't believe it's been three weeks since my transplant!  I had my first nearly normal socialization this week - an outdoor pool party.  The transplant team had some major reservations about my attendance, but being that the setting was outdoors, they considered my request, I had to do some major cajoling, bargaining and finally, after promising them all, but my first born, they conceded.  I promised I would be as pasty-white leaving the pool party as when I arrived (slathered on the SPF50 and dressed for fall) to combat my new photosensitivity. I also promised that all parts of me would avoid the pool and I wouldn't eat any food (that whole germ/ buffet concern).  A lot of conditions but it was SO worth it!

Getting used to a new normal hasn't been a seamless transition - I'm still getting used to a new routine - keeping close tabs on my vitals, drinking enough to make a camel proud (and also be the envy of every dialysis patient), steering clear of people (air hugs just aren't as satisfying as a real squeeze) and getting weekly lab work.  Speaking of lab work - just a quick bit of friendly advice to any medical service providers - telling your perspective pin cushion, 2 weeks post transplant (and massive steroid infusions) that she is potentially ruining your day because she is a difficult stick is just a tad bit insensitive, not to mention short-sighted - Her spindly veins aren't there to spite you, I'm pretty sure she likes being a 'difficult' patient far more than you do! Okay, rant over.
So, even though there's been (and will continue to be) an adjustment phase and learning curve to my new normal, it's been very do-able.  My first transplant has been my measuring stick, by which I seem to compare all my current experiences to - so in regard to the first time around, this time is a cake-walk.  And while I'd credit some of that to previous life experience, a nursing degree and greater maturity (no comments please - let a girl have her fantasy) - I know that the real reason things have gone as they have is because of God's mercy, hand of protection, gift of wisdom and Christ honoring the prayers of so many!   

Surgery Updates - Retro Entries

It's been ages since I had anything really newsworthy to blog about.  But in the last 3 weeks I've had much to praise God about and much to report.  Below are updates I posted to on a private updates page for family/friends. I've dated them and put them in chronological order.

August 5, 2014

Hi! I would especially appreciate your prayers today, there's a potential kidney in the works! Please pray for our peace and wisdom. Trusting that God has set before me the path that's best for me, even though I don't know what the plans are He does! Thanks in advance for all your prayers – God has blessed me so greatly already through the many prayers of family and friends!

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Just a quick update – transplant, Lord willing, is scheduled for tomorrow! Lord is good and greatly to be praise!, right now I'm getting my IV IG infusion and hoping to catch a few winks before my early morning – will appreciate your prayers very much! Thank you, I could feel the blessing of the prayers throughout the day with the calm the Lord provided for me and my family! Please continue to pray for my family the doctors and for the family who lost someone today that was so selfless to provide me with this gift!

 

August 6, 2014

It's been a long day followed by a long night. I finished my immune suppression infusion at 1:30 this morning and then had to take a beta dine shower – PS any photos posted here after require bad hair day grace– in my hurry to get here today I omitted all hair products... It's so amazing how God has worked all this together in his timing– so much better than I could ever planned! I hope to write about it one day when I'm not under the influence of Benadryl and steroids  but let me just say what an awesome God I serve! Life is not always comfortable, today was a big reminder of that, but even when I'm uncomfortable God is the great comforter and I'm taking great hope in that tonight and for the days to come! Thank you all for your prayers and kind words and encouraging words! God has blessed me so greatly today with the peace only he can give and I know that you were praying for me it's greatly appreciated by myself and my family!

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FB update, per family:

A quick update on Vanessa - her surgery went well, she is back in her room and her new "kidney is working and making pee" (Vanessa's actual words). Vanessa, I guess it is time to get the "I peed today" T-shirts made

Vanessa, and family, are grateful for everyone's prayers. As expected, she continues to inspire us all and we are reminded that the Lord is good!!

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God is good! At the end of the day I'm able to sit up in bed, eat clear liquids (I suppose that jello is a food group) , smile, and Pee!  Tomorrow, the plan is for me to get out of bed and do some walking, please pray that I'll have good pain control and That my low grade fever would be gone in the morning. I have been warned that the meds I will be taking tomorrow typically cause some unpleasant side effects – would you please pray that I would be an exception but that if I do have the side effects that I will just trust the Lord to help me through and that I would have a positive testimony even the most unpleasant of circumstances

Body art courtesy Pre-op Staff:
My surgical 'tattoo' was meant to be a visible reminder
to surgeons and staff to avoid using my fistula arm. No sticks, No BP!

August 7, 2014

I'm not quite ready for a 5K but I've been up and walk three laps around the transplant floor and plan to do some more walking after supper. PTL! I have had my second Thymoglobulin infusion today with none of the predicted side effects – God has shown himself to be so very faithful and I thank Him and thank you for all your prayers because I know that he's hearing them and honoring them to the experiences I've had
 

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I have the coolest family ever! Last year when I saw these shirts my cousin had found I mentioned that I needed I Peed shirt when I got my kidney. They remembered this is awesome you know, it's the little things that make life so full of fun!
 

 

August 8, 2014

Two days post-op update

 I saw the surgeon and members of his posse this morning. He is very pleased with the progress that I and my kidney have made. My creatinine which is a blood level that measures kidney function started above 11 then yesterday dropped to 4.9 and today it was 2.4! The normal range is approximately 0. 5–1.4. If I hadn't been connected to so many wires I probably would've been doing a happy dance but I had to leave that to my family LOL speaking of wires I got my oxygen and telemetry monitor discontinued so now all I have to keep me tethered is a central line, I Jackson-Pratt drain, and a Foley. Little by little they're giving me more freedom  my day started off a little bit rockier than Thursday, think my seven laps that Dave previously was a little more than I should've done so I'm taking it a little bit easier today and I'm feeling much better this afternoon the Lord is so good and he's greatly to be praised! Thanks for all your continued prayers I'm humbled and very appreciative, as are my parents! The staff caring for me here have been quite a blessing and if I can't be at home I'm thankful the Lord provided a place with such good care! But you better believe that hasn't stopped me from trying to be "helpful"! LOL

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I've already been given homework and a pop quiz to see if I know what's in store for me, I was sure glad they gave the test to me after I got the kidney I'd hate to think if I failed the test . As I go forward, my biggest concerns will be infection and rejection. I'll be going into hibernation a little early this year avoiding highly populated places and those that are sick or have had live vaccines. Essentially, the drugs that make my body a hospitable host. also make me highly susceptible to all illnesses so I'll be the one holding my breath and giving long distance air hugs

 August 10, 2014

Today mark's four days post op. Saw my doctor this morning during his regular rounds, he was pleased with the progress that I continue to make. My creatinine dropped to 1.6! I haven't had a level in that range for well over five years – God is so awesome! I continued to marvel at how he's orchestrated each event and they know that none of it is coincidence. I used to pride myself on being a good planner, but I'm so thankful that he has the reins because The intricacies of his planning far surpass any meager attempt on my part! I spent the day getting my last infusion of thymo and tonight I will get possibly my last dose of IV antibiotics. I spent a large part of the day walking the halls and walked 17 laps around the unit, I'm starting to find sore spots I didn't have a few days ago but over all the Lord has blessed me with a very uneventful last few days crazed Boulevard!! I continue to ask for your prayers while one chapter has ended and I've received a kidney there's a whole new journey ahead of me learning how to adapt to this new lifestyle and to be a good steward of the spectacular gift that I've been given. The doctors keep reiterating how very important it is to be stringent in the days months and years to come being that I am so desensitized. it's a little overwhelming.

Today was the first day I started to feel the effects of the IV Solu-Medrol I.E.steroids you know it's the steroids talking when you look at your plate and not having oatmeal makes you want to cry. It's this new chapter now the Lord has me on I'm so excited to be on it but so very thankful that the Lord is on it with me he didn't bring me to this place to leave me by myself and I am trusting that he will continue to lift me up and bless the prayers of my friends family and even perfect strangers! And what a blessing you all are to me thank you for the many prayers and I think you invents for continued prayers what a gift it is to pray for one another! I suppose I better sign off now before I get weepy all over again thanks thanks thanks!  May God bless you for your prayer coverage and outpouring of love!effects of the IV Solu-Medrol

August 11, 2014

Foley catheter – gone, Jackson Pratt drain – gone, triple lumen central line – gone. I am a free woman! Well line free at least. Creatinine level dropped again today it's 1.3, the lowest it's ever been at least in the last 15+ years, You can bet the Loewens we're doing a happy dance today and praising the God who are gifted me with such a precious gift! I was released at four today and now will hang out near the hospital until my next clinic visit at the end of the week. It's been a long day with a lot of information to process but it’s a great opportunity to launch into my new lifestyle and still have a bit of a safety net nearby. I feel tired, a little sore and a bit nauseous; but it pales in comparison to how I could be feeling – I also feel immensely blessed to have this new chapter of life in front of me! I don’t think I can ever say it enough, God is so incredibly AWESOME!been a long day with a lot of information to process but it's a great opportunity to lunch into my new lifestyle and still have a little bit of a safety net nearby. I feel tired, a little sore and a bit nauseous ; but it pales in comparison to how I could be feeling- I also feel immensely blessed to have this new chapter of life in front of me! I don't think I can't ever say it enough , God is so incredibly AWESOME!been a long day with a lot of information to process but it's a great opportunity to lunch into my new lifestyle and still have a little bit of a safety net nearby. I feel tired, a little sore and a bit nauseous ; but it pales in comparison to how I could be feeling- I also feel immensely blessed to have this new chapter of life in front of me! I don't think I can't ever say it enough , God is so incredibly AWESOME!been a long day with a lot of information to process but it's a great opportunity to lunch into my new lifestyle and still have a little bit of a safety net nearby. I feel tired, a little sore and a bit nauseous ; but it pales in comparison to how I could be feeling- I also feel immensely blessed to have this new chapter of life in front of me! I don't think I can't ever say it enough , God is so incredibly AWESOME!

 August 13, 2014

One week post op

 

August 20, 2014

Two weeks post op – glory to God for the great things he has done and continues to do in my body! And yes, peeing is just one of the many new blessings I am thinking God for! Thanks to all for your prayers and continued prayers!! Psalms 103:1 – 2 Let all that I am praise the Lord; with my whole heart, I will praise His holy name. Let all that I am praise the Lord; may I never forget the good things He does for me.

How to tell if a dialysis day is going to be less than less-than- stellar

·        Comments such as ‘Wow, I’ve never seen anyone with that many interventions done at once’.  Sure I like to be at the top of my class, but gold star for best pin-cushion… pass

·        When 4 staff congregate around your arm to discuss which hole is the appropriate one to cannulate.  Button-Button, who’s got the ButtonHOLE?

·        A blood pressure of 70/40 is a marked improvement.

·        Hearing the descriptive ‘hairy mess’ uttered to explain why my chair was delayed.  When I told ‘em it wasn’t nice to call me that, they said they were referring to the day, but I’m pretty sure I saw their pants on fire…

 

Yeah, It was that kind of day.  Here’s the promises God reminded me of when 2 burnt fingers were the furthest thing from my mind and I wanted to cry.  Psalm 103:1-2  Let all that I am praise the Lord; With my whole heart I will praise His holy name.  Let all that I am praise the Lord – May I never forget the good things He does for me.

The last few weeks as I’ve been trying to come to terms with disappointment and change of plans I’ve been memorizing this verse.  Here’s what is most striking to me about it.  Christ is always worthy of my praises, there’s no situation that changes that.  And secondly, ‘good things He does’ – its not past tense, but past and present & a promise for the future.  I never want to forget either of those things.  Today, when I was counting the minutes until I was done, the Lord gave me strength to tolerate my full treatment time and to not cry like the very big baby I am.  He also reminded me of this promise (another of my memory verses the last few weeks) 1 Peter 4:12-13 Brethren, do not think it is strange, concerning this fiery trial, which is to try you. As though some strange thing happened to you, but rather rejoice to the extent that you partake of Christ’s sufferings, so that when His glory is revealed, you may also be glad with exceeding joy.

I am very thankful today for Christ’s promises, for the prayers of others – I know Christ honored them today, I am thankful for care providers that are compassionate and skilled (and I’m really thankful that Paige was at work today).  I’m also thankful that treatment is over today and that tomorrow isn’t Friday.  I’m thankful for cinnamon juju bears & perspective. And now, I’m thankful for naps!

So it seems that in addition to driving, handling heavy machinery and shopping… stovetops and skillets should also be avoided when under the influence of sedation.

I had a major overhaul to my fistula today – 2 accessory vessels coiled, 4 angioplasties, 3 insertion sites, 2 slipknots and one stitch (all terms I’m sure I heard them use…while I was sedated)….  And know I’m left with two miniature slinkies in my left arm (I wonder if I’ll set off the metal detectors), a newly re-jiggered fistula,  two burnt fingers and a throbbing arm.  ‘Where’ you may ask, did my burns come from?  In a semi-lucid state, while using my fingers as a grilled cheese flipper, I may have inadvertently grasped the side of the skillet.  On the bright side, it took my mind off my throbbing arm for a while & its super handy, when the ice pack on my arm gets to frigid I just slide it down to my fingers – win. winJ

I know I’ve been ‘radio-silent’ for a few weeks & I want to remedy that soon.  I’ll just end tonight by saying I’m okay and I appreciate the outpouring of love and prayers – I treasure the blessings of my family and friends. Thanks for all the support – I’ll have more to write when I can fully account for what I’m saying;) With all my love, Vanessa

Let all that I am praise the Lord, with my whole heart I will praise His holy name. Let all that I am praise the Lord. May I never forget the good things he does for me! Psalm 103:1-2