The Princess and the Pee

I spent my weekend preparing for a Peritoneal Efficiency Test (PET).  One of the items I needed to complete prior to the test was a 24-hour urine collection.  Not too glamorous, eh? Well if that disturbs you, imagine my enthusiasm each time I open the refrigerator and spot the oh-so-inconspicuous orange jug…lemonade, it is not…  Oh, well, I digress….

Anyways. When my 24-hours came to an end I was surprised at the near non-existence of urine.  This made me sad, for two reasons.  Laugh all you want, but filling that jug has always been a source of pride for me and decreased urine output is a classic sign of end-stage renal disease.  It was just another reminder of my disease’s progression.  It was at that moment that I realized... that makes me the word’s best travel buddy… BRING ON THE ROADTRIPS and detour the rest stops!!!!

I'm killing time while waiting for my exchange to finish up (CAPD).  I was surfing the internet and found this website.  I can't vouch for its credibility, but you can bet I'll be checking it out and doing my homework.  The concept seems so simple.  Its something I've been asking myself since I was put on the transplant list (five months ago)-- why can't all the persons that made the effort to be tested to become a potential donor, be used for others who match?  maybe this is the answer, maybe its not.  If you've ever considered being a living donor, you may find this website interesting as well :)
By the way, just in case it looks like I'm grasping at straws....  I have tremendous faith in the Great Physician, I haven't received a kidney yet, because its not the right time  for it yet.  I am standing on His promises and believing that He is using this time to His glory and my growth! :)
Finally, I want to take the opportunity to address those who went forward to be tested on my behalf -- words are inadequate to express to you my gratitude, I am humbled by the love you portrayed through your actions! May God bless you richly!
 Thank You -- D.S., A.G., K.P., T.P., H.B., J.W., I.R., L.T., E.F., Anonymous
--V

http://www.matchingdonors.com/life/index.cfm

What did you say? Learning to speak my language...

Today, marks the one month milestone of being on peritoneal dialysis and Tuesday I will have been on dialysis (Hemo + Peritoneal) for two months. It has been filled with many experiences, but stressful and joy-filled.  Most recently I've been frequenting the dialysis office at Fresenius, while the nurses therework to clear up some bleeding I've had at my catheter site, and blisters that have developed at my IJ site (jugular access for Hemo).  Looking back I see what an education all of this has been.Here are just a few things I've learned...

Jargon is a bit different, words no longer mean what they once did -- check it out!

• Hooking Up - to connect one's self to the patient access line & dialysis machine
• It Sucks - Nope it's not a commentary on enjoyability of events (is enjoyability even a word?), it's what  happens at the beginning of each exchange.
• Exchange - 1 full cycle of dialysis (draining, filling, & dwelling)
• Dwelling -  A type of domicile, it's not... Actually its the time the dialysis solution 'rest' in the peritoneum.
• Sleep -- yeah, well, this one is supposed to mean the same, but its been something of a scarce commodity.

See what I mean?  It's a whole new world, thankfully my friends and family haven't changed, they are as supportive and loving as ever I could ask for.  Most importantly, my God hasn't changed, praise God, He's the same - yesterday, today, and tommorrow!

Tangled: Clinging tight to my life line while sidestepping the trip-ups

Something, as they say, is definitely ‘in the water’.  Have you noticed it too? Everywhere I turn people are having babies.  Tune in to Face Book and it a veritable baby boom….

Why do I bring this up?  Far be it from me to rain on anyone’s parade, I am just as guilty as the next at feeling the rush of endorphins when cuddling a sweet baby or exclaiming over the burgeoning ‘baby bump’.  But take it from a gal who’s not expecting to be expecting any time soon – singleness can be bliss, but it has it’s own minefields.

We all have one, a well-intentioned family-member, friend, or co-worker who just can’t wait to play matchmaker.  Shoot!  I was one myself, not so many years ago.  It just so happens…. I have about a dozen.  With so many eager-beavers it’s a wonder I’m still single --- or is it?  To date - suggestions have come to include men old enough to be my grandfather (really?) and an intoxicated fellow with “nice eyes” (I think not).  So you see my dilemma…. It could easy to feel out of the loop when everything around you says, life hasn’t really started ‘til you’ve found love.

Its easy to swallow the hype – I’m guilty, I’ve done it before, and it’s a slippery slope. (‘ I’d be happy if only I was in a relationship.’  ‘When I’m married I’ll…”    “My life will really begin when I’m married”)  Pinning your self-worth on another person can open a world of hurt.  One thing I’m learning as I traverse the world of kidney failure is that life is a precious gift, but one that doesn’t come with any ‘lifetime guarantees’.  Singleness is what I have today, how I choose to view it is my choice.

Long story, not so short  - I’m choosing to embrace the  gift I’ve been blessed with today.  I’m choosing to tune out the lies and I’m turning to my First Love.  Wow, can I just tell you… what a blessing it is as I begin to give more time to my relationship with my Christ.  The more time I spend growing my relationship with Him the less time I have to wonder where’s my prince… Why wonder, when I have access to the King—and He has my very best at heart!

So, while this isn’t much of a medical update, I did want to share with you the work that God is doing on my heart, it just feels me with overwhelming awe and joy to know that my God knows me, loves me in spite of it, and has my best interest at heart! But I'm most thankful that "that he who began a good work in you will carry it on to completion until the day of Christ Jesus."
(Philippians 1:6)
being confident of this,

Mild Disclaimer:  The writer of this material does not wish for its contents to be perceived as derogitory towards marriage, babies or the persons ingaging in such activities.  Neither does it implicate the writer as having taken a vow of singleness.

The Pitfalls of PD

they never tell ya how it really is.....

Have you ever noticed that when faced with a life changing/altering endeavor no one ever truly gives you  the whole story?  Or even if they do give you worst case scenario, the delivery is candy-coated or minimized.  What do I mean?  Well, for instance.... In my line of work there's such a thing as informed-connsent, it means each person has the right and responsibility to be told of all the risks and potential complications.  Take for instance -- the procedure of placing a central line.  I've heard a delivery like so... "So we'll numb up the area, and put in the catheter, now there's always the potential for it to collapse your lung, but thats no biggie, cause then we'll just make an incision and put a chest tube in, but its not a big deal."
Do you believe it, its not a big deal? Yeah, neither do I  Its not until the person has the procedure taht he/she truly understands the breadth of what was explained.

Such has been my experience.  This week is my second week of home PD, what? you ask does PD stand for ?  Pretty Darn exhausting..... umm, well no, not really, but it was the nicest name I could think of right now :)  For those of you that knew me prior to my transplant, you'll remember that I did PD for 4 years in my teens.  Going into this for a second time, I felt confident I knew what was in store for me.  Yeah, well, what I learned is that I have selective recollection.  But on the positive side I have had a very real education, which no amount of class hours could teach.


Sleep is precious.  Did you know that if tired enough, a person can sleep in the midst of rowdy, yelling children?  Yeah, sleep is sleep and sleep without my PD machine -- let's just call him Bert -- I know I was calling him Liberty, but the only liberty I have with him is the freedom I am pursuing AWAY from him!  Its becoming far too routine to be up at least 6-8 times per night, addressing the alarms.  Beep, Beep, Beep -- ugh, some nights its easy to discern the trouble, others its a bit trickier -- oh, the alarms aren't any different, its just as the days go by, and I become more sleep deprived, my coordination and brain power are playing hookie.  Last night I spent an hour and 8 alarms looking for a "patient blockage" -- I think the blockage was in my brain.  When I finally found the solution, it was as simple as I've become.  Have you ever apple that when you become mattress you begin to lose your edge?  Sometimes wors ust bermuda me. Occasionally, I even find myself doughnutting about my bed. i'm sooo tired, if only I could gettttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttt *snort, grunt*  oh, yeah, sleep -- Yes Please!

So, now that my sleep pattern is grossly affected, it is extremely important that I fuel my mind and body the next best way -- FOOD!  Case in point.. I wish someone would have told me these cords don't stretch.  I've been particularly earnest to get "hooked-up" early to Bert so that if all else fails, I can at least sleep the last 2-3 hours Bert is finished.  I was so proud of myself when last week I set up and hooked up by 5:33 pm.  As I was patting myself on the back, I began to brainstorm my evening meal.  Now with my hook-up out of the way I had boundless time to kick back and eat supper.  MMMM supper, I think I'll make spaghetti and have some tarts for dessert, ohh and later if I get hungry I'll make some popcorn, but first I'll put the nooooooooooooooooo.  Have you ever see a dog try to catch their tail?  or a hefty individual in a thong?  Both are examples poor miscalculations -- and now I had joined the crowd.  Apparently my line only reaches so far, and the kitchen was -- soooooooooo far away.  :(   Long story short, I ate the pear I found at the bottom of my work bag....Lesson learned!

All joking aside, I have to say how very good God has been and continues to be.  First of all, the fact that I can even laugh at these things, when at the time all I wanted to do was cry, is a miracle of God's grace.  Then on top of that He allows me to look on these situations and He uses the experience to teach me lessons -- sometimes about myself and other times about the many blessings He places in my life.  Take for instance my incidence of reaching the end of my rope -- quite literally :)  God placed it within my heart to evaluate what my hunger is for Him.  Do I make the same attempts to read His word and talk with Him?  It's making me evaluate my priority set and making certain to make Him the central focus.  Its too important to make second best. 
And one of the things I am most excited about is the way God is using this time to bring blessings in my life in the form of people.  God is awesome and even though I'd rather get rid of Bert (I haven't found any takers yet).  I am blessed that this form of dialysis is possible and that it is working.  God is Good! 
Now, if you'll excuse me, my pillow is calling me :)
--V

Sticky Swamps and Firm Foundations

Tonight, I did peritoneal dialysis on the home cycler all by my ‘big girl’ self!  And all my big girl self wants to do is cry like a big baby!

Set-up went pretty smoothly, but hook-up was rocky and not even five minutes into treatment I had to call my educator for reassurance that my actions were not threatening…. False alarm.   *Breathe* My stomach was in knots, but sleep finally came.  Alarm 1, Alarm 2 – ‘stop’ ‘silence’ and return to sleeeeep, uh not quite – Alarm, Alarm, Alarm -- *sigh*  Now I remember where my alarm clock phobia originated from.  Why won’t I drain?  I check my clamps, look for kinks, all while fumbling for the silence button, when all of a sudden like a flash I know what the problem is…. Like those corny flashback tv segments I hear my educator,  “Don’t forget to take the cap off the drain or it will back up”.  I jump out of my bed and amble to the bathroom my tubing trailing behind.  Yep, I forgot to unclamp the drain tubing, but I did it one better – I forgot to put it in the toilet to drain.  I know I should clean it up, but right now I’m so tired I want to cry.  So I slap some towels down to mop up the dialysate, uncap the port and tape it to the toilet to complete this elegant drainage system.  So things are looking gloomy right now, I’m tired and discouraged – so I’m going to go back to bed, because I’m hoping things will be brighter and alarm free in the morning.

So that was last night – I woke late in the morning to a voicemail from my educator, checking to see if I’d survived the night… Survive? Yeah, if points aren’t deducted for style or subject’s deameanor, then yeah, I survived.  In fact, once I successfully disconnected things began to look…..wet…. and sticky.  Ugh -  “it could be worse”  *sigh*  “it could be worse”…. My mantra while cleaning up the drainage mess left from the night before.  Oh, yeah I know, it could have been much worse, but you try thinking that when your vanity’s become prime realestate for a swamp and it becomes glaringly clear that the floor has a northern slant! -- *Deep Breath*  Okay, I’m done whining… in fact, give me a couple days, some needed sleep and I’m sure I’ll be able to laugh J 

As I write this I am feeling more confident about my decision to take on the responsibility of Home PD.  But it is a responsibility – I clocked the time it took me to set up my machine, change my dressing and hook up --- 2 hours!  It makes me think that there were some definite perks having the responsibility shifted to someone else during in-center Hemo treatments.

Life is kind of like that, anything worth doing takes work.. I heard it put into this illustration – Jesus talks about creating a firm foundation so that when struggles come our way we can anchor into our firm foundation and survive.  The pastor talking about this said to “grab a shovel and start digging”  for any areas in our lives we want to truly succeed in.  I want to rest in the knowledge of God’s love and peace.  So I’m gonna have to grab a shovel and dig deep into God’s word.  It’s my challenge for the new year – I hope to emerge refined and more mature – I know it will be work, but with God’s help, I’m up to the challenge.

Farewell to Hemo & Hello to Liberty



Liberty Peritoneal Dialysis (PD) Machine

 So, the long awaited day has come!  I am lying here listening to the soft cooing of my newest arrival – no, you didn’t miss the announcement – my home peritoneal dialysis machine came today.  With its arrival come feelings of excitement, relief, anxiety and inadequacy.  But more about that later….

All in all I experienced 11 HemoDialysis treatments – plenty by my standards, but minuscule in comparison to most of the In-Center Hemo Patients. 

In the three weeks of Hemo, I developed an appreciation for patients – no , scratch that – PEOPLE who undergo in-center dialysis.  Before, experiencing it for myself, I had written it off as a treatment for ‘really sick people’ and distasteful – I had even made such bold declarations to myself that ‘I will never do that’.  Oh My-Lanta!  Did I just admit to being wrong? J

I’m sure that were my fellow Hemo compatriots to read this they would further set me right, but allow me to impart the wisdom of my 11 treatments….

* Pouting is pointless – Yeah, I know it’s a stretch to think of me as pouting (I am confident it has had no bearing on the enormity of my lips).  I really wrestled with being placed on dialysis.  All along I’ve accepted what has come my way, knowing that God had purpose in it all.  Well, what the hammertoe was the reason for dialysis? I lost a lot of time getting to know those around me…

* Someone always has it worse than me – I don’t revel in this, but its true… Each chair at dialysis held a person, each person had a story and life and dreams and ambitions.  Some eagerly await transplants, having been on the list 1 year, 2 years… some embrace dialysis as their treatment of choice and others consider discontinuing treatment.  In spite of all that, the center’s employees and patrons put on a celebration that would knock your socks off.  A boisterous Santa, his spunky elf and reindeer, even an angel (bet you can’t guess who that was)… It was a reminder to me that life is what you make it!

I learned a lot more, but overall, the experience really was positive and I’ve made some friends in the process J  Tonight I’m thinking how appealing in-center dialysis is…. I welcomed my home PD machine today – Liberty – I’m hoping she lives up to her name, allowing me more freedom to work and allow me to feel good -- - But right now I’m wishing I’d spiked the bags with Prozac – My nerves are a little jumping with all the possible complications and responsibility.  Home dialysis is not for the faint of heart!  But, like all the other obstacles, I am trusting God to see me through.  Again, Im reminded that even though I bear a large part of the responsibility, my God is ultimately in control.  Oh, I am so glad for that – so thankful that when I am weary, scared and lonely – Christ is here and He will see me through.  Isaiah 40:30-31  Even youths grow tired and weary and young men stumble and fall, but those who hope in the Lord will renew their strength, they will soar on wings like eagles, they will run and not grow weary, they will walk and not faint.

I appreciate your prayers and would just continue to ask for them – please pray for precision in my technique, wisdom and peace of  mind and that God’s will to be done and that He will be glorified through me and in this time!






Above: Upclose view of IJ catheter
Below: Hemo Machine filtering my blood for 3 1/2 hours.