Epstein-barr virus … it’s back!

Remember this post?  In December, 2010 – around 3 months post-transplant, my liver enzymes started increasing.  Everyone panicked, my team ordered a liver biopsy, and then it just turned out that my nurse had forgotten to check the box for my monthly EBV (aka, the virus that causes mono) labs and lo and behold, that’s all it was.  I had somehow caught mono in my severely immunosuppressed state.  I did not kiss anyone or share food/drink with anyone, although 2 people in my house were “carriers” of the disease. After a few months of antivirals and lots of hype, it was under control.

I believe I picked it up again last spring and I can’t exactly remember what/why/how long, but I believe it went away quickly.  That was when my white blood cells (immunity) were literally in the decimal points. (Normal is 4.5-10)  I was so busy being weak and getting the splenectomy that I really just don’t remember the mono that clearly.  You have to choose your battles, friends.

So skip to last fall… 1 year post transplant, the team stops drawing monthly mono labs.  It’s just protocol.

Proceed to May-ish of this year. I was so fatigued – constantly – and often felt sick but couldn’t pinpoint what was wrong.  I passed it off as viral and went on with my life.  But the fatigue has been relentless.  I finally decided this feels a lot like mono did back in 12/2010.  After a lab test, sure enough, it is indeed positive for EBV.

I’m waiting for Molly (my transplant nurse coordinator) to confer with my surgeon, Dr. Eghestad, about the course of treatment.  I, of course, am fearing worst-case scenario (as usual) which would mean a liver biopsy to check for post-transplant lymphoproliferative disease (PTLD) which is when the mono/EBV leaves the blood and enters the liver.  I’m worried they’ll play with my anti rejection meds to give my body more “fight” for this and possibly run me on a few months of Valcyte (strong antiviral drug) again.  I’m trying not to rush to any conclusions before hearing how bad it really is this time. I do not have time to deal with a biopsy (nor the pain or the anxiety), and I don’t want to go to the Clinic to visit my transplant surgeon and the Infectious Disease team.  I’m already going up there in August, and I have been enjoying the “break.”

So don’t worry – mono is transmitted via saliva, so I’m not contagious unless I am kissing you or sharing a drink with you.  However, if you are immunocompromised like myself, no one knows how it gets around so easily.  It’s a mystery to me.  At least it’s not the pneumonia I came down with a year ago at this time.

Please pray we get this under control and that my energy levels start to increase.  It’s summer time!  I’m in 3 courses for school, an art class, and I have my normal super-busy agenda to keep up with.  So many friends, events, family, everything that makes this life so sweet!

Also, post-traumatic stress treatment starts tomorrow.  That should be interesting, to say the least.  I want to give up these wounds once and for all, and I finally found a place where I think I can get some help.  More on that later.

Please don’t forget to be rallying for my August 11 Lifebanc Team Race for Amanda event – we are off to a good start, but we can do much better.  Around one more month to register and invite a friend!  I will be drawing the Early Bird Raffle ASAP – didn’t feel up to it today.  Hopefully will post tomorrow.

Love to you all,
Amanda

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Another Update

Once again, I’m a little late on an update!

I’m all healed from my massive splenectomy!  My 40 staples are out, my incision is healed, and other than fatigue and sore (cut) abdominal muscles, I think I’m doing pretty well!  This surgery was a lot easier than my transplant, no question.  Homecare is gone, I’m done laying on the couch all day, every day 🙂 and I’m eagerly awaiting the day when I can drive again (mid-September).  

My labs have fabulously improved, and with the platelets and WBCs under control, we’re now working on the red cells.  I’m anemic, and my oncologist is trying iron supplements for a couple months before we look at any other measures.

As far as my surgeon, during the surgery, he discovered a narrowing in one of my main portal (liver) veins.  The narrowing causes decreased flow into my liver which could increase my liver enzymes (bad).  So tomorrow I’ll be at the Clinic for an ultrasound and CT scan to get a better look at that.  And a visit to infectious disease to see why my pneumonia shot isn’t “sticking.” 

That’s really it.  Hoping to start “normal life” next week (minus the driving 😦 

Happy weeks to all of you!

Amanda

Recovery

Okay, I realize this is a little late, and I apologize.

I had my splenectomy Friday, was discharged from the hospital Wednesday, and today is now Friday again, and this is the first post-surgery update I’m sending.  I wasn’t that “plugged in” in the hospital.  I pretty much slept, had tests, and laid there for all those days.  I begged to come home early, and it was a success.  I’m so grateful for the early trip home!

So the surgery… it was a success.  My surgeons were shocked that the spleen inside me was larger than a football, when “normal” is the size of a fist.  We knew it was enlarged, but that big was just unbelievable.  It was so big that they just reopened my transplant scar.  They cut through all of it but a couple inches, therefore not leaving any bit of a new scar.  That was good news to me.  The bad news is how big the incision had to be – I have 40 staples for this, and I had 50 for my transplant.

As soon as the spleen left my body, my labs started increasing.  The white cells flew through the normal limit, and my platelets are actually in normal range.  I’ve never had normal labs since I was at least 5, and this spleen has been an issue since then.  My labs just started  getting worse during the past several months, thus prompting the surgery, a last resort, the last thread of hope.  My surgeon says my labs will stabilize soon.  He’s also having me start taking a tiny aspirin each morning in hopes to get my now high WBCs and few other labs stabilized.

Not sure how life will improve for me since I’m still weak/tired (from surgery, inactivity last week, and now pain pills) and am having huge incisional pain but let’s give it a couple weeks… I hope to feel so great, better than I’ve ever felt before!

Thank you so much for all the prayers, calls, cards, emails, gifts, you name it.  I am so grateful for your love.

Don’t forget the Lifebanc Walk & Run is tomorrow.  Please come if you can! It’s too late to pre-register but you can register at the door 7:30-8:30 tomorrow morning at Blossom.  Details on my site here.  I’m too weak to walk, but I will be there to thank my sweet team members.  Hope to see you there!

xoxo
Amanda 

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