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

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. 🙂

Rejection

I should have known.

For probably around a month now, my vastly improved, post-transplant state of existence has been declining.  I have been so tired, so utterly exhausted.  I blamed a medication I take for fibromyalgia and even started taking less of it, but it didn’t seem to help.  I noticed petechiae on my hands on Sunday and was itchy today – both symptoms I had before my transplant – so I was starting to wonder a little deeper.

Sure enough, I got a phone call from my transplant coordinator at the Clinic, Molly, and she said my liver enzymes from Monday’s labs were so high that they’re worried about acute rejection.

Rejection is an issue all transplant recipients face, and it can happen when your immune system isn’t suppressed enough, therefore causing it to “attack” your organ.  The first months after transplant are riskiest as surgeons are still trying to get you at the exact dosage of medications to keep your medication symptoms low, yet your dosage effective.

And that’s where I am now.  They stopped my mycophenolate mofetil (CellCept) right before my liver enzymes, unbeknownst to me, started increasing.  This week, the levels were sky-high, way past the normal range.

So what does this mean for me?

I have to have a biopsy next week – which I am dreading due to really bad past experiences – and based on the results, my surgeons will determine the next course of treatment.  If my liver cells do indeed show rejection, I will be put on IV steroids and possibly a course of increased oral steroids for awhile.  They already have me back on the CellCept as of today, so hopefully that can take care of whatever is going on as well.

Honestly, I’m not sure what all of this means.  Molly assures me, “The good thing about liver rejection is that it’s very treatable.”  Yes, with a biopsy and IV steroids.  Two terrible, awful things.  In case you don’t recall, IV steroids make me laugh, scream, and cry all at the same time.  They’re kind of magical in that respect!  I had biopsies as a child but have terrifying memories of them and have not had one in probably 10-15 years.

Part of me says, “Look what I’ve been though.  Do I seriously need something else? I can’t take anymore!” while another part of me says, “Look what I’ve been through.  What’s one more thing?  By now, I can handle anything.”  The first way of thinking is louder, but the second way of thinking sounds better.

Please stay with me through this journey as you’ve been so good to do in the past.  My biopsy is next Thursday, December 30th, and I will definitely be a nervous wreck until then.  Any prayers or thoughts truly mean life to me.

Love,
Amanda 

2 months

It’s been two months since my liver transplant, and I can’t believe where I’ve been during these past 8 weeks.  I can’t believe what I’ve been through, the support I’ve been shown, and how wonderful God is to stand by His children.  I can’t believe I made it through what I have, and when I think of what I still have to endure to get through this, I’m comforted knowing the worst part just has to be over by now.

Rewind… August 31st, 2010, the middle of the night.

What a difference a phone call can make.

Or what a difference eight hours can make… when you’re in a deep sedation, lying on a cold, metal table with your abdomen sliced open in three directions, doctors working all around you to remove a diseased, dying liver and its hardened vessels to replace it with a healthy donor’s organ and properly functioning vessels.  You know it’s probably not the same kind of eight hours for your family and friends waiting nearby, and you feel guilty for making them go through that kind of waiting, you know, the kind where you don’t know if your loved one is going to wake up or not, wondering what condition she’ll be in if she does wake up, wondering what the road ahead will truly be like…

What an amazingly short, yet life-changing journey it is to be living one evening, at a fun birthday party, in fact, not even dreaming you’d be awakened by a phone call in a few hours… fast forward to the very next time you are awakened… this time, with a new organ inside your body, a list of strong, foreign medications now running through your system, 50 staples going in every direction across your abdomen, a breathing tube frustrating you, and a thousand lines, tubes, and drains running into and out of you in every direction.

You wonder how it’s possible to gain 20 pounds of fluid when you were, well, 20 pounds lighter the last time you remember existing.  It’s everywhere, and it seems the center of gravity is in your middle, which is so swollen that it appears to be anything below your neck and above your legs, also perceived as tree trunks.  That’s what a difference a few hours can make.

Slowly… the pain pump is taken away.  The meds are weaned to normal levels.  Labs, vitals, and blood sugars are measured around the clock.  Certain systems don’t work.  Certain systems are affected negatively by the new medications.  Sleep is a gift, and getting in and out of bed is the most painful realization.  Getting comfortable in bed is a rare treat, and even at that, the nurse brings you pain medications.  Breathing is a chore, and walking is a feat.  You can’t shower or brush your hair, and you can’t bend, twist, or reach.  Your arms are the only strength you have, and without them you wouldn’t be able to get out of bed on your own or adjust your body on your mound of pillows.   You deem it nearly impossible it is to exist without any structured abdominal muscles, and you wish you were past this part already.

You soon wonder why you packed 4 or 5 bags about a month ago.  Did you seriously think this would be easy, and the week-long hospital stay would be long, boring, and almost unnecessary?  One bag for all the time (even ICU!), another for when you get to a real floor, one for when you’re bored and want things to do, and one for your clothes.  Because you hope to be wearing real clothes after a few days.  Right.  You will later laugh because you were very content to be in a hospital gown – not even your designer gowns but the hospital’s gowns(!) because your incision was so messy and the clothes didn’t fit your new swollen body anyways.  Then, towards the end of the week, you remember the cute bathrobes you packed and wear them instead of double-gowning, and that works for the rest of the time.  But really…. 5 books to read and cards to play and your MacBook Pro?!  You barely even used your iPad!  Coloring books and the huge box of crayons for boredom? Sleep won that choice.

Anyways, each day, you lose a little more fluid, while at the same time, each day, you’re surprised to find a new area that’s swollen to unbelievable levels.  You feel like a stranger to your body.  You refer to yourself as a whale, and you quite honestly are.  But one day, you step on the big hospital scale and realize you’ve lost 10 pounds!   The next, another 10!  The doctors say to be patient because, while you’re starting to have more defined body segments than just “a middle,” it will take a couple of months to lose all of your abdominal swelling.  And it does.

Every morning at 4am, they come in for labs.  Your nurse gets them from your central line, and once your central line comes out, the phlebotomist comes in, pokes your arm, and draws vials of blood to be tested for everything from electrolytes to liver panels and metabolic panels to simple, yet all-telling, complete blood counts.  When you leave the hospital, you will go to the out-patient lab twice a week for labs because of how important a few numbers are to rejecting or not rejecting your organ, and it won’t be until 1.5 months that you start going weekly.

When you finally get to go home from the hospital, you’ll be surprised how uncomfortable the ride is.  You’ll be afraid of bumps, turns, sudden stops, and seatbelts, and you’ll be surprised that bumps aren’t nearly as bad as turns.  When you get to your house, you’ll be surprised that yes, you can climb steps, and also at how much your dogs missed you. 

You’ll also be surprised to see you can’t get into bed, and you will go into a panic.  The day and the drive have exhausted you, and you need a bed!  When your dad removes your foam mattress topper (6” extra height) and you slowly log roll yourself onto your mattress, you will have no where to lay since your incision runs so deep into your right side.  You order special pillows and still sleep so uncomfortably.  After a few nights, you give up and sleep on the couch or in a big comfy chair.  You quickly find sleeping propped up on something is the only way you can actually get some sleep.  And naps are a necessity to a healing body … same thing goes.  Couch or chair.  You think this will never end, but after a month you get to sleep in your own bed again, and it feels so good to be “home.”

You visit the transplant clinic every week, then after maybe 1.5 months, every 2 weeks.  By week 6, the doctors let you come back in a month.  How exciting!

You’ll make two unfortunate trips to the emergency room before those first tough months are over – one for a leaking drain site, another for an infected and split-open incision.  They will both be difficult visits, one because of the discomfort and mess, another for the pain it entailed.  You hope that’s the last time you have to go to the ER for a very long time.  Being a transplant patient is even more complicated than being a liver patient.  ER doctors are even more scared of your history than before!

With the open incision, you decide it’s time to lay on the protein.  You have your mom pick up protein powder, and you make milk shakes (milk + protein in a shaker bottle!) that you reluctantly down at least once a day. You are determined your incision will heal.  Plus, you’re hoping the protein will be good for your body – Due to the new meds and your body’s adjusting, you don’t have much of an appetite and have been losing weight constantly since you came home from the hospital.  Now, at 2 months, you’ve lost a total of the high end of 20-some pounds since before the surgery took place.  Nothing fits, and you have every size Gap jean imaginable, not to mention at the present time, you’re ready to go buy a size 0.  Any smaller, then what happens?  You don’t want to even think about it.

You get a home nurse for about 3 weeks to measure the open incision and make sure it’s healing well.  You hope it closes by your 2nd month anniversary because it’s just a nuisance.  Wet to dry dressings, twice a day.  A routine you could live without.  And sure enough, the day before your 2nd month anniversary (yesterday), you wake up to find it completely intact.  You thank God even though you know your abdominal skin will now bear a huge scar, and you won’t have the feeling and sensation you once had.  Your scar and the surrounding area is numb to the touch, yet it somehow still throbs in a couple of places.  But at least it’s finally closed!

You enjoy the first 5-6 weeks laying low at home and enjoying visitors, and when you regain your driving privileges at 6 or 6.5 weeks, you’ll make lunch dates to catch up with your friends.  You quickly learn where your limits lie and remember you’re still not fully healed.  You sleep 10-12 hours a night, and anything less makes for a difficult day.  You call your nurse coordinator daily for a few weeks and then are amazed you can go a whole week without a new question or concern.  She’s happy for you and probably relieved you’re not as needy anymore!

You’re keenly aware of where you’ve been and are scared you’ll ever have to go back there again. You’re grateful for your faith, family, and friends, and know they’re a large reason you got through this.  The other reason is, you’re a fighter; you always have been and probably always will be.  And you know it.  And you know strength doesn’t come without a price.

While you’re not where you were on August 31st, you’re far from where you were September 1st, and that’s in itself a miracle and a blessing and everything good and wonderful.

So here’s to another 2 months of life, another 2 months of healing, and hoping these first several months will go by fast so you can feel better than ever.  Here’s to hoping you will have a profound story to write on that note you plan to send your donor’s family, a story of a life drastically changed by a selfless gift, a story of an existence improved beyond measure with the gift of one organ, an amazing transplant team at an record-breaking, award-winning hospital, and the patience of a few months’ time.

Thank you to everyone who’s been anywhere on this journey with me for the past 2 months.  Whether by a phone call, a blog comment, a visit, a card, a gift, a text message or a prayer… I will never forget the role you played in my life, how you helped me get through each day of a very hard time. 

I’m so grateful for these past 8 weeks and everything that’s led me to this place.  I can’t wait to see what’s next.  I’m full of gratitude, hope, and excitement.  I’m eager to see past recovery and discover the better version of everything with this brand new life I’ve been given.  I’ll keep you posted – I have a feeling good things are ahead

So much love,
Amanda

Liver Transplant Update #7: Sunday – Getting Better!

Typing this on my iPhone because we are not sure which bag my iPad is in, and getting out my laptop seems like a lot of work (okay, and I’m not sure which bag it’s in either – funny how I couldn’t care less about all the bags I packed)…

And thank goodness for the holiday weekend movie marathon on USA… 🙂

Today has been a busy, crazy day.

First day on a normal diet, losing literally liters of fluids I’ve been retaining, got my central line (triple lumen) taken out, my little incision drain has just been flowing, no more IV pumping – just a peripheral line for meds and fluids. I have probably lost like 10 pounds today, no joke. The doctors want to send me home Tues or Weds, and I’ll come back up a week later for a checkup then a week later to get my 50 staples taken out. I’ll get labs done 2x/week at home. Sounds a little crazy… the doctors say I’m progressing so much faster than normal while I feel like I’m running a never ending marathon. The meds make me hot/cold all day, I’m a fake diabetic from the steroids (to decrease my immune system) which will be reduced in 3 doses, I’m on “self meds” now which means I learned my med list and schedule and give myself my meds as the schedule goes on. I’m kind of brainstorming to say things that are happening so I’m all over the place – sorry!

Thank you to Peg & Wil, Leslie, and my Wed PM Bible study girls for the flowers/balloons/monkeys that have come here and to the house. Thanks for all the cards pouring in, the phone calls, emails, blog comments… my parents and friends relay all the messages and everyone asking and checking and praying… Wow, thank you. And God is moving in a huge way, like I said… the doctors said I’m doing awesome. Of course I’m worn out and feel like I’m sitting here getting gross and rotting in the hospital, but now that my central line is out, I get to take a shower. (Which honestly sounds potentially painful because of how huge and nasty this incision is) I’m scared to go home because of all of the unknowns, the new rules, the new meds, but I’ll have a transplant coordinator on call 24-7 for any questions. What a relief. And they say my swelling is much lower than most people and going down well, but my honest opinion is that I feel like a whale. Gross, right?

So that’s about it… hopefully I’ll keep draining all this fluid and getting up more and more tomorrow. It’s hard work recovering from this! And the rules, my goodness. I can’t lift over 5 pounds for 6-8 weeks, 10 pounds for 6 months. I’m immunosuppressed, and they said it could be up to a year until I feel “normal” again. I’m hoping not. But we’ll see. I’m not done fighting yet!

I love you all so very much, and thanks for holding my hand and lifting me up through this incredible journey. They said I’d have trouble sleeping, but there’s a peace here all the time. May you feel some of God’s caring love, too, and rest in it for awhile. 🙂

One day at a time…

Amanda

In over our heads

Seeing we just returned from Florida on Saturday, May 22, regular testing at the Clinic on Monday and meeting with my long-time pediatric hepatologist on Tuesday was a little stressful.  Then, we found out the testing revealed my liver needs to come out now, and in a matter of a discussion lasting for under an hour, our lives were turned completely inside out.  My doctor and I have a close relationship, and she fought back tears as my mom broke down.  I knew then, that we were forced onto a journey that we didn’t ever believe would happen to “us,” a journey that we ultimately will never forget.

Wednesday was a matter of the transplant coordinators figuring out how to schedule the “cornerstone” appointments of anesthesia, social work, surgeon, and hepatologist around completing testing like EKGs, ABGs, a dozen of physician consults, and meeting everyone from social workers to psychiatrists to anesthesiologists.  In no time, they had me scheduled to spend Thursday and Friday attending a long checklist of appointments and tests, with a much needed long weekend (Memorial Day), followed by intense Tuesday and Wednesday schedules.  And then I’m done.  Or so they say.

Monday’s tests were an abdomen ultrasound and a contrast MRCP (a form of MRI)  The new venous collaterals and mysterious tumor sent up a million red flags, and on Tuesday, my doctor told me how important it was that we expedite the pre-transplant work up and get the liver out ASAP.  As I’ve said, she was excited about the outcome and thinks my life will be something I’ve never known before.  I’ll feel good, have energy, and be able to really live.  Being sick since age 5, I just won’t have any idea what it’s like.  I like the idea of it though!

In between telling our close friends and family, the next few days were just rough.  

Thursday was by far the craziest day of pre-transplant prep – it was painful, it was long, and we had a ton amount of information thrown at us.

5:45am: Leave for Cleveland
7am: Laboratory – about 30 vials of blood pretty much drained my energy
7:40: Adult gastroenterologist consult
8:30 Financial specialist
9am: Radiology and surgeon consult 
10am: Chest X-ray (which got pushed to late afternoon)
10:30am: EKG  (which also got pushed to late afternoon)
11am: Pulmonary function testing
11:30am: Transplant coordinator
12:30pm:  Computerized health questionnaire
1pm: Infectious disease
2:30pm: Arterial blood gas testing (PAIN) 

Friday was a little better…

The day began at 7:30am when I got radioactive dye injected into my vein for later bone imaging.
8:30am: Lisa, social worker
10:30am: Bone scan to check for any movement of the tumor
HOME early!

I chilled like crazy all weekend, as fatigue is my biggest symptom and I don’t bounce back too well from long days.

Next week, I’ll be meeting with a hem-onc, a women’s health CNP, an anesthesia specialist, and there will be a large teaching session where we will be drilled in the As-Zs of a liver transplant.

I’m a little thankful I’m too tired to care much about this.  Otherwise I think I might be a mess.   Plus God is carrying us right now, I can feel it.  Plus this isn’t quite reality yet.

Love to you all.