Home!

Well friends, I finally made it onto oral antibiotics (praise God!) and my WBC level increased so I was discharged on Saturday. I was excited to get out, and I was thankful I didn’t have to have a port inserted for IV antibiotics.  Also, I was so glad I didn’t have to sit around in the hospital until my counts raised.  Surprisingly two Neupogen injections rose my WBC from 1 to 4(!!)

I have been very weak this week and am very swollen for some reason, but I don’t have any pneumonia symptoms anymore.  I don’t think I ever really did, though – other than the fever and chills the day I got admitted into the hospital.  I’m grateful my symptoms weren’t worse than they were, and I’m also glad the pneumonia didn’t become life-threatening.  With my immunosuppressant medications, the illness could have easily gone out of control.

I was on so many medications last week that a lot of the details are sketchy, but I do remember some great doctors, nurses, and friends.  I remember all of my hospital visitors and Danielle spending 2 nights with me, sleeping in the uncomfortable chair.  The cards, flowers… they, like they were a year ago, helped keep me encouraged.  Thanks, everyone.

So once my oral antibiotics are finished (Saturday) I’ll be past the pneumonia, thank God.

Now, the next obstacle is the splenectomy.  Next week I’m meeting with one of my liver surgeons who is the best choice to take out my spleen.  I’m also meeting with my oncologist and my infectious disease doctors, too.  All three are involved in my case right now.  I’m hoping to have the surgery scheduled at my visit Monday, so we’ll see.  It’s a big surgery, and I cannot get it done laparoscopically since my spleen is so large holding all of my blood cells.  That means a long hospital stay, long recovery, more pain, and more destruction to my poor abdomen! I’m not excited about it, but if this is the answer to improving my low white blood cells (and low platelets) then I think it will be worth it.

I have had dangerously low platelets since I was diagnosed with liver disease as a kid, and after my transplant, my white blood cells completely took a dive to “critical level.”  Platelets enable your blood to clot, while white blood cells protect your body against infection.  Deficiencies in both are big deals, and with the platelets, we just hoped they’d improve with the transplant.  They did a little bit – more so in the beginning – but now they’re dropping.  Either way, the biggest issue is the white blood cells.  I caught pneumonia because of them, and now my doctors are wanting to get my spleen out now as it “sucks up” and hides all of the blood cells my body is needing.  The worry is I could catch something far more destructive than “just” pneumonia.  So without my spleen, nothing will be completely filled up with my blood cells, or so is our hopes.  And if this doesn’t work?  We’re pretty much out of options.

When I am afraid, I will trust in you.
Psalm 56.3

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A road trip, visitors & a splenectomy

It’s 10pm Wednesday night.

I’m sitting in a wheelchair in the backseat of an ambulance being driven by an attractive EMT.  We’re driving on the highway, under the stars, talking about life, love, roadblocks, choices and pain.

He controls my temperature and the car stereo system while he speaks words far more valuable than the gas in his tank or equipment in his trunk.

I’m excited yet petrified to be going to the Clinic.

Excited because it’s my favorite hospital, excited because my doctors are here, and excited because there’s a chance I will be on the transplant unit, able to see some special familiar faces.

Petrified because this is my last chance for answers on my low WBC and platelets. Scared because the next couple days are critical to the rest of my life.

I’m finding out – once and for all – if I need a splenectomy or not, if I want to deal with the side effects or even what those side effects may even be.

Forget the pneumonia hanging out in my chest… My problems now are much more important than that. Or maybe not – what if the worst – or praise the Lord, best! – is yet to be seen?

Either way,

Psalm 23.2-3
He maketh me to lie down in green pastures: he leadeth me beside the still waters.  He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.

Amen.

And thank you for all of the sweet friends who came to see me pretty much all day today.  You are all so precious to me.  Thanks for all the words of prayer and thoughts of kindness coming at me from so many places.

Love love love
Amanda

Just waiting…

My morning started bright and early with my doctors completing their assessments and nurses and techs beginning to obtain their orders and tests. At 5/6am.  I forgot how fun this part is.  Reminds me my post-surgery days!

Oncology said they want to look further into giving me Neupogen injections to increase my white cell count.  My opinion is that, if they work, then praise God.  If they don’t work, then at least we gave that option a second chance. Who knows, maybe it will take a new team of docs to solve this mystery of a problem.

Afterwards, my PCP came in and said he doesn’t see me going home unless my WBC increase significantly or my pneumonia clears (judging by his conversation with us, he is not looking for me to get better much soon).  He said it’s one or the other.

And so we wait.

For the rest of the day, I enjoyed several friends coming to visit, and I enjoyed that a lot.  It’s pretty bored on this unit even though I have a lot of things from home to do.  Plus the morphine is knocking me out and I’m on it around the clock right now.  So yes, pretty tired, too.  But this is life right now.  I’ll be back with an update when I get one, and I desperately hope it’s positive!

Here are beautiful flowers my friend, Lydia, brought me yesterday

flowers from lydia