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

Threats

My Christmas Tree

I packed my hospital bags today… My “day bag” for Thursday’s biopsy/testing as well as my “long stay” bag just in case.

I’ve been through the ups and downs of illness for so many years that I’ve learned to have hope while always being prepared.  Both are key.

As I explained in my last post, my body is rejecting my new liver.  This could be minor, or it could be a big deal.  We won’t know until Thursday.

In an attempt to solve the problem, last week, my doctors added an anti-rejection med that they had previously taken me off of due to side effects.  Apparently, it isn’t working as my labs on Monday came back worse than before.  We are looking for clues on Thursday, despite the fact that one of my lab values might interfere with getting the biopsy done in the first place.  My INR, which measures blood clotting, is 1.5, and above 1.5, the surgeons won’t do the biopsy. Liver disease affects INR values, which is quite possibly why mine has risen.

I was doing great just over a month or so ago.  I was finally feeling energetic after my surgery, and I was impressed how well I felt – better than ever in my life!  Then slowly, I started feeling fatigued.  Next, I was taking 2 naps/day, reminiscent of my life with liver disease.  My abdomen started swelling, and I found petechiae (tiny broken blood vessels) on my skin, again, symptoms of liver disease, symptoms I had almost forgotten about since my transplant. Then I experienced itching, the hallmark of liver disease.  I knew something was wrong, but I couldn’t figure out what.

When my transplant coordinator called me and told me how high my liver enzymes were and how all signs indicated rejection, I knew.  And these symptoms still plague me even as we are trying to properly diagnose the problem and treat it most efficiently.

The disease I had been miraculously saved from just a few months ago, is now apparent again every day of my life.  I know it’s not the same disease – only symptoms of an aggravated liver – but it’s still frightening.

I finally got a new lease on life, a chance to be healthy, a chance to live a normal life.  I fought back from a treacherous surgery as a brand new life dangled in front of my eyes.  I had more energy, clearer thinking, and set up plans for my encouraging future.  Then in an instant, nothing was certain.  Nothing is certain.

Will I be well enough to resume school in less than 2 weeks after all I’ve fought through to maintain my standing?  Will the rejection really go away?  My team and transplant friends say rejection is common in the first year post-transplant, and it’s usually treatable, but this still feels wrong.  

Who gave me this gift of a new life – only to threaten taking it from me?

So what are the treatment options?  If it’s minor rejection, I will get oral steroids at home or a few doses of IV steroids in the hospital.  If my body goes out of control and the IV steroids don’t work, I will stay in the hospital so the doctors can treat me carefully until my labs become stable.  Additionally, the longer my enzymes are elevated up, the bigger risk to my liver it is.

I feel violated, afraid, and unsure.  I’m anxious and reaching a point where I’m tired of pretending everything is still fine.  I absolutely love the holidays, and this year I’ve tried to enjoy them because I have so much more to be grateful for, but this rejection issue has remained in the back of my mind throughout.  Tomorrow night is my big, annual Christmas party, and while preparation has been taxing on my weak body, I’m mentally exhausted as well.  The fear is so present.  Plus, it will be a late night with lots of people to be happy for.  I try to portray a picture of health and gratitude as always, and you all know how much I adore my loved ones, but with all this uncertainty, it’s so hard.  Even my favorite things are becoming hard.  I guess it’s not the first time.

Please pray for grace, peace, and courage.  Pray for good results and quick healing.  Hug your loved ones and be grateful you have them.  I know my mind can go a little out of control, but my worst fear is not being around anymore.  Since I love life more than some people, I feel I deserve it the most.  Is that so wrong?  If only people could realize what they have.

Thanks for sticking around.  I love you all so much.

Amanda

PS – The photo above is of my Christmas tree.  My mom lets me put it in our dining room since it won’t fit in my bedroom.  It’s pink, of course, and I keep only pink/white/silver/neutral ornaments on it.  A lot of my ornaments have very special meaning, and I take great pride in making it pretty every year!  Just wanted to share it with you, my dear friends. 🙂