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.



One Step Closer to Peritoneal Dialysis

Today I had my peritoneal catheter externalized.  On December 3rd I had the peritoneal catheter placed, during the surgical procedure, surgeons implanted the catheter into the peritoneal cavity and imbedded it into muscle tissue.  The rationale for imbedding the catheter and not leaving any outside of the body is so that the muscle tissue will grow around two cuffs and provide a strong anchor for the catheter. This was different than my first experience with peritoneal dialysis, so I found it very interesting.  The hope, is that with such a firm anchor and since the body has been introduced to the catheter there will be less incidence of infection  (call peritonitis).  With today's procedure they numbed the skin and palpated the abdomen (pushed on my stomach) to located the end of the catheter. Once that was located, it took some convincing, but finally the end was flipped out and attached to the connector tubing.  The whole procedure too less than 30 minutes -- it was relatively painless (slight stinging with the local and pressure flipping out the end).  So, now with the catheter coiled on my stomach I have a constant reminder that I will soon be able to begin the training for PD. 

Above, I've posted pictures of my prior to externalization and post externalization.  The first photo show the incision and endoscopic 'stab wounds' for implanting the catheter  the second photo show the catheter outside the body.  No stunt doubles were used :)

Be-ware of the Chair



Today was my 9th Hemo treatment.  Except for one day's bumpy treatment, the overall experience has been positive.  In the two & one half weeks I have been on dialysis I have lost 20 pounds and regained my ankles!!  Cankles - no more :)  And as my prednisone dosage is decreased I am beginning to gain my face back -- you, that thing with cheek bones and one chin (hmm, well I'm afraid I get ahead of my self -- I still have an abundance of chins, but anyhoo....)  One thing I will miss about Hemo is the sense of community.  For those of you who know me and what a shy, delicate thing I am.... you know it takes me a little while to warm up to a crowd.  but Christmas has allowed me to get to know the staff and other dialysis patrons a little better. 

So as I was saying I've really only had one treatment that made me question if I was cut out for hemodialysis.

It was a Friday, the weekend was just hours away and I was itching leave my recliner behind and start my weekend early.  I followed the routine, when I arrived I paged the nurse and was 'buzzed in',  I weighed and found my assigned chair.  Let me tell you about this chair, it's big and cushy with a great head pillow and a reclining footrest.  Total comfort, right?  Well, you decide for your self.  When I sauntered up to the chair it was in a yoga position, the down dog I believe, yep, I kid you not....  That should have been my first inkling of foreboding.  but no, innocently I helped the chair back into a resting position ( I'm just sure I heard it say 'thank you').  Events proceeded normally enough, standing blood pressure, sitting blood pressure, dressing change and IJ catheter hook up. With the exchange underway and the 31/2 hours slowly ticking down, I put up my feet and prepared to find the answer to that nagging question.... deal or no deal?  

All of a sudden a tickle surprised me and I had to cough.  The cough subsided and I returned to my mental edification.  All of a sudden a whistle blew - awhoooo awhoooo and an alarm sounded beep beep beep beep and along came the reinforcements.  Amidst the voices I gathered that my arterial pressure was high and flow was low - apparently neither of which is appreciated by the medical team (and following this exercise it doesn't sit well with me either).  Fluids were pushed, lines were crossed and I was reclined further -- so, now I told you about that big cushy head cushion -- for most persons of average height this would have been a head's dream, but for those of us whose feet don't quite reach the floor -- you'll understand when I say the head rest was just that, resting on (and above) my head. Little did I know that this would come in quite handy, nearly life saving. 

So back to the events at hand.  Pressures got regulated and tensions eased, but the rest of treatment I had to periodically cough to ease the elevated pressures -- imagine a vacuum hose getting sucked against a wall -- you have to wedge the hose away to ease the pressue -- it was similar with my IJ (interjugular) catheter when it suctioned against my chest wall.  I settled back into a frozen position, head facing to my left, hands folded in my lap, legs crossed, but a gal can only hold that position for so long when the legs MUST MOVE. So I casually shifted my weight and my world turned upside down.  The chair with no warning and no command from me began to tip, tip, tip back.  I held on for dear life and rode ' the beast'. Most folks have on chaps and spurs for the kinda ride I took.  When the chair came to a quivering standstill I took inventory of my person. feet- check -- hmm I don't recall them over my head... head - check -- well don't that beat all, I can see my reflection in the floor tiles.... And do you know?  That big cushly above head cushion kept me from sliding out of the chair!

The above facts are true. Actual events may have been exagerrated for the reader's enjoyment. No chairs were injured during the course of events.

Two new hook-ups and still no cable reception????

Since my last post, life events have been topsy-turvy.  I’ve been hesitant to put the month’s events into words, because well, I’ve been less than thrilled with the order of events…. I guess if I’m totally honest with myself and with you, my readers --- I’ve been pouting….   I’m sure spiritual pouting is as heinous to God as tantrums, neither of which are terribly grown up or mature…. I would like to interject here that the above is in past tense…. I am beyond the kicking and screaming and poochy-lip (most days) – I share these less-than stellar trials – because you can’t fully appreciate where I’m going until you’ve seen where I’ve been.  So – here’s my “reader beware” disclaimer – the events described below depict a real person, events described won’t be pretty – please locate designated exits, keep arms and legs inside vehicle at all times, stop, drop and roll…. Uh – yeah, you get the point J!

Thanksgiving was fabulous!  I spent the day with family and a fawey pwincess ;)  It was a blessed day – it also was the peak to a very low valley.  Friday brought with it a case of stomach flu – it layed me low and I couldn’t bounce back.  Nearly a week later – Thursday, December 2^nd with my most recent labs reflecting my ill health and the last living donor ruled out – I made  the call.  My nephrologist and I agreed that it was time for medical intervention.  By 2pm I was in the hospital, where I had an IJ catheter placed and by 10pm I’d had my first Hemo treatment.  On Friday, the third I went under general anesthesia to have a peritoneal catheter placed. 

Fast forward to the present – I’ve got 6 Hemo treatments under my belt, my PD catheter is floating around in my tummy and my incisions are all healing nicely and itching like crazy!  In the whole scheme of things the procedures I had were minor…..  But in my little piece of Ness-Ville  it rated a 7 on the richter scale.  I’m not one to make waves, I don’t like confrontation and when feasible I tend to go with the flow – BUT  the events, minor or not left me feeling dismayed, frustrated and wrestling with questions of “why”.  Why now?  Why this?  I seriously think I could have picked much better timing.  How does this timing work into God’s purpose for my life.  I never would have scheduled dialysis to occur two weeks into my new job or two weeks from Christmas.  

Do you have a firm grip of the whiner I can be?  It’s not pretty, I know – So let me move on --  I am less than thrilled to be on dialysisis – I didn’t want this and I definitely don’t like the timing – BUT here’s what I know….

               * God doesn’t make mistakes

               *God’s timing is perfect

               * God knows me, loves me, created me and desires His best for me

               * My life has purpose and even when I don’t know what it is – God Does

I have found amazing reassurance in the words of Paul in 2 Corinthians 12:7-10 – He had something in his life that He asked God to take from him, but when God didn’t remove it, Paul accepted it and sought to use it to God’s glory and his edification. 

So I’m choosing to trust God with my present and my future because He has proven His faithfulness in my past.  I am pocketing my poochy lip and instead filling my lips with His praise.  I don’t know what purpose dialysis achieves for eternity, but I want to be a pliable vessel .  I have chosen to focus on the positive possibilities.  Being on hemo dialysis hasn’t been nearly as bad as I imagined it to be.  3 days a week I have multiple hours to sit and think and its given me time to pray and talk to God and catch up on other errands.  I am being weaned off of some of my harsher medications and if I am off steroids long enough – I might be able to have a steroid free transplant!  The last week of December I will begin training for Peritoneal Dialysis and then I will be able to lead a nearly normal life in the daytime! 

So when it comes down to it – life is good –  I still tire easily, but I’m having more days where I feel good – I am blessed~  Thanks so much to those of you who are praying for me – I know that there is amazing power in prayer and I am encouraged and humbled by the outpouring of love from so many!!

2 Corinthians 12:7-10  Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. ⁸ Three times I pleaded with the Lord to take it away from me. ⁹ But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. ¹⁰ That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

What's in a name?

What’s in a word?  Well, Shakespeare believed that the glorious perfume of a rose would be greatly diminished were it a…. skunkcabbage, boogerjowl or ninneygobbler.  I don’t know—does the signifigance truly lie in the word or our frame of reference?

In the life of a transplant patient (i..e. my life)  there are few words that strike a more powerful emotion as to make your heart drop to your heiny and your stomach lodge in your throat.  Rejection… yep, the ‘R’ word.  For over ten years I’ve been conditioned to dread and fear this possibility.  Now maybe if it were called fuzzychocolatebunnies or camero, hmm… no matter the name, the definition remains the same.

After last weeks Dr’s appt. I’ve been rolling another less-than-stellar word around my head – Dialysis.  I am blessed to have this treatment as a medical option – and while I am thankful for the option, I am not eager to undertake the challenge.  Because I am an adult, I get the task of making the grown-up decision about when and if to start dialysis and what type to pursue. 

So here’s what I think about Mr. Shakespeare theory – what’s in a name?   Forget the name and tackle the issue – yeah, maybe if I’d been conditioned to run when I wanted food I’d be a size 2 and miserable LOL, but God has given us the remarkable gift of experiences and free will.  So even though I have known anxiety, I also know God the Father.  He has a few other names too --  comforter, healer, great physician….. and He can fill my frame of reference with His peace that surpasses all understanding!  (Phil. 4:6-7)

A Call To Action

It's late and I know tomorrow I'll wish I had been more prudent, but the thoughts in my are louder than my fatigue right now.  Since my last post I've learned a good many life lessons.
* One - Statistics hold far more significance when they deal with life
* Two - Verbs are action-words -- Thus, these words should elicit ACTION...

I feel a little sheepish putting my thoughts to cyber-page.  After last week lauding the concept of waiting.  Yes, I believed it clever to relate my "waiting woes" in a watery-analogy.  Boy, howdy, am I glad that God loves us where we are, because sometimes I can be waist-high in stupidity!
What spurred this revelation? - -- one phone call....
     Friday afternoon I received the call that I was to be 'on alert' -- a kidney was available and I and another girl each had a 50% chance of being the recipient.  50/50 -- People bet on far less odds...
I'd like to say my first thought was excitement and gratitude -- it wasn't -- Actually, those thoughts didn't even register top three.  First thought -- ' I sure hope I have clean underwear',  and secondly, ' I really wish I'd cleaned my house'.... The next few hours I waited for a call that did not come.  But what did come was an amazing lesson.
Wait -- is a verb, but I've been treating it as a noun.  Just acting as a passive bystander casued me to be caught off-guard.  It got me to thinking how I need to be prepared mentally and physically -- to the best degree I know how.  So, yes, I do have a bag packed -- my undies are clean, my house is, hmm, getting cleaner (Rome wasn't built in a day, you know) -- but above all else, I'm working on my relationship with Christ -- taking time to worship Him while I'm waiting, Praise Him while I'm waiting.  So in His timing I can be the woman He desires me to be!
*on a side note -- I would ask that you pray for me as I actively wait for God's timing for a kidney and also for continued health and strength as I begin a new chapter in my professional life....  Thanks --V

Sink or Swim? Being Still or Still Waiting...

My keyboard’s keys have been quiet for a long time – what’s that you say?  Blessed respite?  Peaceful silence?  LOL… Well, in the words of my dear sister, I have been an “unfaithful tomato”….

This post is an update to those interested, but mostly it stands as a road-marker on my most current life’s journey.  

Since my most recent post I can tell you that….I know absolutely nothing more… *sigh*, not so exciting is it?  Now, I know that sounds cynical and self-defeating, and maybe that’s how I’ve felt during the first 28 days without news, but as each day passes I’m learning something….   P..a..t..i..e..n..c..e… Yes, for some it’s patience, but for me it really is P….a….t…  OK, you get the picture.  I’m the one who’s a little thick-skulled, not you ;)  

I’ve proclaimed a lot of ‘bits of wisdom’ and lessons God has brought to light in this journey, but perhaps the loudest, most persistent, and dare I say it, most positively aggravating, has been  WAIT.

I detest ‘anti-climax’ – the thrill of any thing worth-while (movie, skit, music, etc…)  is the crescendo leading to the pinnacle of all the work’s focus and then the big TADA! 

My ‘TADA’ went taSP-LAAT – My big crescendo landed a belly-buster!  

At the beginning of this journey I had expectations, of myself, of my doctors, my family/friends…. And of my God.  Eight months later, all my expectations have been blown outta-the-water. 

So,  to sum it all up…. I am waiting…  I don’t know for how long, but I am learning that waiting is work, it’s not my wish to wait, but it is my desire to be the person God wants me to become – and right now, that molding is coming from my learning to practice trust.  It’s like swimming (or my brand of buoyancy) The more I fight it, the faster I sink, but when I lie back and look up, I’m able to keep my head above water. J