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

Praise & Request:: Enzymes improved!

Praise: Just a quick little note to thank you for your prayers and support – my liver enzymes are lower than they were even in January!  I got labs drawn Friday, and Molly called me late on Friday to give me the good news so I wouldn’t worry over the weekend.  My enzymes are in the normal range again, so the little increase in my Prograf must have worked.  (It always does.)

Request: The “for-sure” date for my next (2nd) endoscopy with dilation is Friday, March 16, so please be praying for that.  It’s under general anesthesia, and there’s always enormous risks with that.  Plus I really hope this does the trick to quit the choking spells once and for all.  It’s been about 2 years with them, and they are scary, embarrassing, and painful. No fun! 

Enjoy your week!  It’s definitely springtime here in Ohio! 🙂
Amanda 

Epstein Barr & Neuopogen Injections

My transplant coordinator Molly called me mid-week.  Amazingly, the EBV level in my blood is now negative.  I haven’t been on the Valcyte that long, so my team is surprised, to say the least.  I believe it was your prayers. Thank you.

On the other hand, my WBC level hit 1.26.  (Normal range is around 4-10.) Both the Valcyte and my Cellcept could be contributors to this, so they took me off of the Cellcept.  To take me off of the Valcyte with EBV so recent is a risk, so I will finish out another month of that. 

Either way, I was/am too neutropenic to stand any infections that may be floating around, so my surgeons started me on Neuopgen, aka the injections chemo patients give themselves to increase their immune systems.  They prescribed me a series of three injections, and, once my insurance finally approved them, I picked them up yesterday.

Neupogen

I know a lot of people give themselves injections all the time – insulin, these Neupogen injections, all kinds of things.  After you do it a few times, I’m sure it’s not that hard.  And as a senior in nursing school, I most definitely know how to give an injection.  It’s just the whole idea of pinching my own skin, darting a needle into my own body, aspirating, and pushing the drug into my tissue.  Pressure and out.  To my own body?  Yes, emphasis on that.  No thank you.

After hearing my fear, Molly suggested I go to the doctors office and have the nurse there do it. I called them and made an appointment. What a great idea, I thought.

But then I thought, what kind of nurse am I?  I can give injections to patients but not myself?

So I gathered my mom and my dogs for support, sat at the kitchen table, pinched my thigh and darted the needle in.  Aspirate, in, and out.  

And it wasn’t as bad as I thought

I did it again today, and still, not as bad as I thought.

Honestly, I’d like to do this a few more times so I can see myself get really good at it, but tomorrow is my last injection.  Wanting to give myself injections means I’m a nurse, I think.  Or just an overachiever who doesn’t want to quit until I’ve perfected it.  But on the other hand, I’m glad to see them go.  The side effects of Neuoogen include bone and muscle pain, which I am definitely noticing.

You know, I never thought this would be part of transplant life.  Yet I never thought I’d get EBV in the first place.  And then again, I never thought my hair would fall out and the surgeons would be super picky about any help I try for my back pain.  I never thought they would actually rescind my clearance to drive for a couple of weeks last year.  I never in my wildest dreams would have imagined a scar this big, and I never thought it would still ache, 4.5 months later.  I never thought I’d have this many insurance problems with medications, and I never thought medical bills could actually go this high.  I never thought I’d be so scared, yet I never thought I’d ever find the kind of peace I’ve found in the last few months.

Transplant life definitely isn’t what I thought it’d be, yet for these extra days of life, I definitely can’t complain.  I’m truly so grateful, and these are all small sacrifices for the gift I’ve been given.

Here’s hoping my white cells are in normal range Monday.  Molly expects it to be really high.  We’ll see!

Have a great weekend, sweet friends.

Amanda

– Written yesterday 🙂  

Biopsy results – Part 2

Like I said in my last post, the biopsy (last Thursday) showed nonspecific inflammatory changes, but no rejection or bile duct damage.  That’s great.

However, they found the Epstein-Barr Virus in my blood after the other week’s labs, and they wanted to run my biopsy sample to see if the virus had made it to my liver.  If it had, there would be a chance of it causing a particular form of cancer, a lymphoma, called Post-transplant lymphoproliferative disease (PTLD).  PTLD is surprisingly seen mostly in pediatric transplant patients, and the only treatment for PTLD is a strong chemotherapy drug, Retuximab.  Needless to say, we have been hoping the virus was only in my blood and not in my liver.

We were relieved to find out the biopsy showed rare EVB nuclei in my liver, which my infectious disease doctor, Dr. Avery, said were not indicative of PTLD.  She said if it was going to be PTLD, there would be obvious pathology all over my liver – not just the nuclei.

So while we are thankful the virus has not yet made it to my liver, we are praying it doesn’t progress into my liver and cause PTLD.  It’s unlikely, but it is possible.

Dr. Avery wants to keep me on Valcyte, the antiviral for a couple of months to try to keep the virus from spreading.  We want to contain it in my blood. 

Also, my surgeons reduced my anti-rejection meds so that my body has more immune strength to fight the virus.  They have to be careful because if they eliminate the anti-rejection meds all together, they could throw my body into rejection.  They are going slowly and carefully, and of course, they will be watching my labs for Prograf levels.

Dr. Avery will also be closely monitoring my labs, hoping to see the virus levels and my liver enzymes remain stable or, better yet, decrease to normal levels.  

Coincidentally, the liver team is having a pathology conference tonight, and Molly, my coordinator, is bringing my case to the entire group of surgeons and pathologists.  There’s no doubt I’ll get the best treatment from a roundtable discussion of some of the best liver transplant experts in the country.  At the same time, this has the potential to be a rough road until all of the doctors agree on the best treatment. 

The EBV is definitely why I’ve been so tired and likely why my liver enzymes increased.  However, it’s been going on for a while and I believe I’m at the end of it.  

Molly is amazing.  She worked from home New Years Eve, her day off, and relentlessly called Dr. Avery and my surgeons trying to get some kind of answer to comfort us until we could hear more on Monday.  When she called one of my surgeons, he told her he was “not overly concerned.”  He’s one of the best doctors in the country and even studied with the “pioneer” of liver transplantation.  His comment relieves me.

That’s pretty much all I have for now.  Please continue your prayers that this goes away quickly and of course, safely.  This has been a rough road, but it could be worse.  I’m so grateful for your prayers thus far which I truly believe have kept me alive.

Love,

Amanda