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

Through it again

I started this post Wednesday night after I had the procedure done to open the stenosis in my veins.  I’m going to finish it now and get it up for you, but please note I’m dealing with a computer issue.  To get the full effect, you need to see two imaging printouts I have, BUT my scanner decided it doesn’t like my computer.  So check back for that!  🙂

It’s the middle of the night on G-101, the Transplant Special Care Unit at the Cleveland Clinic.  It’s 2.29am, to be exact, and things aren’t exactly quiet.  The buzz of new transplants is in the air.  Several new patients are joining the floor, and more are waiting in the post-surgical ICU to come up.  The nurses are busy, and thank goodness I’m not needing them too much tonight.  Other than pain meds every two hours and anti nausea every six, I’m hanging tight dealing with my never-ending insomnia by getting some work done on my computer.  I still have that wide-awake yet very drowsy feeling of post-anesthesia and pain meds.  I just ate a bowl of Cheerios and am sipping on some milk, mmm.

Yesterday’s procedure went very well.  Dr. Sands went in through my ribs and threaded a stent to where my left renal vein and portal vein connect.  The stenosis in the reno-portovenous anatomic stricture was very bad, and the doctors were thankful they caught it in time.  The stent is now in place, and…

… apparently that’s where I got distracted, fell asleep, decided to call my nurse for more meds, etc.

So anyways, Thursday’s ultrasound showed the stent was doing well, and we saw increased perfusion to my liver which is exactly the result we wanted.  With such a narrowing, my liver wasn’t getting enough blood in/out.  So now the stricture is wide open with blood evenly flowing as it should.

I have a “before” and “after” scan from my doctor that shows several cool things, including all of the new blood flow to my liver.  When my scanner decides to work, I want to post it for you.

For now, thank you again for all of your prayers!  Tomorrow I go back to normal life – driving, events, nannying… everything I love so much.  It’s been (almost) six weeks since my splenectomy and other than incisional pain and referred nerve pain in my left shoulder/arm, I’m doing very well.  I’m back in sewing class, I’m participating in an event at school tomorrow about our Ireland trip, I have a busy social schedule, and I’m finding time to rest and read and enjoy these slower days before things speed up in the new year.  Right now, I feel safe and content.  I figure if I’ve been though this much, if God’s carried me through pain this deep, then how much worse could it really ever be?  God is my provider, and “an ever present help in trouble.” (Psalm 46.1)

Remember that this week.  Oh how He loves us.
Amanda

7 Month Update + News

Today marks my 7- month transplant anniversary.

It’s been quite a month.  I’ve had a lot of highs and lows with my labs, a lot of new medication side effects, and my back problems have gotten so much worse, so I’ve been seeing new doctors for that.  We’re also trying new breathing treatments to prevent PCP (a dangerous type of pneumonia) since my white cell count is so low, and my doctors have adjusted several meds this month as well.   Additionally, I’ve been in the ER twice, once with back pain, and another time with something we think may be an effect from the back pain.  (The picture above is from the ER.)  I’ve started acupuncture and begun my osteomanipulative treatments, so I’m hoping for some relief.  Sometimes I wish I could just have one week without seeing any doctors or practitioners, one week without any phone calls or labs or paperwork.  Is it sad that this is my dream?

Even at that, I’m tapping my foot and twiddling my thumbs, just waiting for some kind of normal life to return. My liver is doing great, but even a slight fluctuation in my enzymes really upsets my body. I get so tired all I can do is lay in bed. Then we get them under control, and I’m better than ever! The ups and downs are very frustrating to me. As is dealing with the side effects of these meds, especially the Prograf (anti-rejection/immunosuppressant) and the Prednisone (steroids). Everyone says things stabilize after the first year, and I’m aching to get there. September 1!

On another note, I am still working on starting therapy for the post-traumatic stress disorder. I have nightmares and flashbacks, and I’ve learned this happens in a percentage of transplant or surgery patients. I suffered from this before when I initially got sick as a child, so I was predisposed to get it. Once I start therapy, I hope to get out of this state of mind.

I’ve been continually trying to share my story with anyone who will listen. I’m still amazed at what God has done for me, and that’s the bottom line. Yes, I am still adjusting to this life, and some days are a challenge, but that doesn’t matter in the whole scheme of things. I’m a walking miracle, and if you’ve followed my story, I’m sure you’ve seen it as well.

So I’ve decided that I’m not succumbing; I am rising above. I’ve made that choice.
I have so many wonderful joys in my life and so much support here for whatever may happen. I’m so grateful.

And on this high note, here is my “News” – I want to share that I am definitely going to Ireland in May.  All my doctors have cleared me, and I’m absolutely beyond excited for this 2-week trip with my nursing school.  7 months ago, we didn’t know when I’d ever be able to travel again, and now I’ve been completely cleared to go out of the country at that!

Thank you for sharing this journey with me and for your prayers. I pray for all of you, as well.  🙂

So thankful for this today…

Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

Romans 8.35, 37-39 

The waiting list

The Waiting List is an amazing website/project. It’s goal? By sharing the stories of people whose lives have been impacted by organ donation, our goal is to inspire the 65% of Americans not registered as organ donors to make the commitment for this final act of kindness.

What a huge goal, but also, what a deserving one.

Their first photo project was How many pills do you take?

So for whomever is interested or can in any way be impacted by this, here are the pills I currently take in one day, but I see it as a small price to pay for these 86400 seconds I had the opportunity to experience today.

Such a very, very small price to pay.

Biopsy results – Part 1

This morning, I had my first liver biopsy in over a decade. It was pretty much as bad as I remembered it to be, but I got through it. I’m feeling tired from the versed, fentanyl, and zofran they gave me, and I have a massive headache from all the drugs, but that’s not the worst part. It feels like a needle is lodged deep into my side, and there’s stinging and pressure. Dr. Chuck, my interventive radiologist, said to expect it to be around for 2 days.

I had a terrible nurse for half of the day, but for the beginning and the end, I had a sweet nurse named Cheryl. She kept calling me her “little friend” and was so kind, gentle, and could definitely place a mean IV! 🙂 We later found out she shared our faith, and having a nurse like that is so special.  Cherly said she’d be praying for me and encouraged me by saying, despite my suffering, my story is touching so many lives. That makes it worth it.

I had a lot of pain and nausea after my twilight-sedated procedure. I actually remember the entire thing. Anyways, once they were sure I was good on the meds and the pain was better controlled, I went home and slept until about 5pm.

Then within an hour, Haylie somehow got into my room and found some chewing gum, and to make a long story short, I’m typing this from her vet’s office. Now we are relieved she’ll be okay, and we’re just waiting on her discharge.

It seems I’m going to sleep well tonight!

So as for results – the preliminary results of the biopsy showed NO REJECTION, only inflammatory changes which are nonspecific.  The bottom line is, from a rejection standpoint, there is nothing to worry about.

However, one more test is pending as they found a virus in my labs on Monday. Hopefully it will solve the elevated liver enzymes/fatigue issues, but until tomorrow, we will wait and see. If the virus is only in my blood, that’s one thing, but if it made it to my liver, there could be severe problems depending on the details.  My infectious disease doctor, who manages my immune system, started me on Valcyte, an antiviral, to start working on the virus, but everything could change tomorrow once we find out if it hit my liver or not, and if so, how badly.  And so we wait.

Another day over… hopefully a full lifetime to go.  🙂

The LORD is my light and my salvation; whom shall I fear?  The LORD is the strength of my life; of whom shall I be afraid? 

          Psalm 27.1

Love,
Amanda

Biopsy update

Hello sweet friends,

Just an update to say I just got out of the OR. The liver biopsy was very painful, and I’m now in the recovery room. I’m writing this as tears drop onto my iPad as I’m having a deep, sharp, pounding pain in my side. I’m still freaked out as I had twilight sedation, and I felt the while thing. Shots, tissue extractors, the whole bit. This has not been a good experience. Hopefully we (my transplant time and I) will get the results of my tissue samples by tomorrow so we can figure out where to go from here.

Also, my labs Monday indicated I have an inactive virus that can potentially harm my liver. Please continue your prayers. My nerves are so bad lately, I’m trying to resume school in January, and I’m honestly tired of all of this suffering.

Thank you for being here for me. Your emails, texts, comments, visits, cards, etc. give me so much hope.

Love,
Amanda

Threats

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 

An update & a prayer request

To all my dear friends who read this,

I just wanted to say hi and give you a quick update.  A few of you have become concerned at the lack of updates, so I figured I’d write a quick note.  And apologize.  🙂  As my previous post (the quote) mentions, the days have been flying by, all together too short!  

I’m so grateful that my recovery has been a bit miraculous, and a great part of that means I’m back to normal life already.  Or at least I was. (More on that later) I’m back nannying full-force and even have a special family for a couple weeks that I’ve really been enjoying being a part of.  Plus, the present holiday season and preparing to restart school in January have both been occupying a lot of my time.  I got my driving and lifting restrictions lifted earlier than expected, and I was enjoying living a full life until I experienced a setback yesterday. Hopefully, it should be over by next Tuesday, but in a world where doctors are obsessed with legally covering themselves, and healthcare personnel rule their patients’ time and lives, who really knows?  I would really appreciate your prayers that this gets worked out and, ultimately, ends as soon as possible.

For anyone interested in transplant meds, I’ve been on Prograf since my transplant.  I started at 1mg 2x/day, then the doctors later prescribed Cellcept 250mg 2x/day on top of that, as well as raising the Prograf to 2mg 2x/day.  I just found out this week that ever since I started the Cellcept, there has been a steady decrease in my weekly labs’ white cell count and platelets.  My doctor is having me stop the Cellcept to see what my labs do, as Cellcept can cause both those drops.  We’re predicting now that we stopped Cellcept, my levels will rise back to normal.   I hope so because Cellcept left me in a constant state of nausea, and I’d love to stop it forever.  As a precaution with stopping the Cellcept though, my doctor upped my Prograf again so now it’s at 2.5mg 2x/day.  I’m convinced Prograf is what’s causing the weird symptoms that I’ve been noticing since I got out of the hospital… things like losing more hair than normal and even breaking out more than normal.  (And normal is pretty much never, so it’s been frustrating!)  I think both are slowly getting better, with the exception of my hair being a complete mess – I think the hair I lost when I did the chemoembolization (which was a minimal amount, thank God) is regrowing in now so I have baby hairs that stick straight up in the winter dryness, and the texture overall is just not what it normally is.  It’s very frustrating to me.  

Also frustrating to me is is the fact that I cannot partake in my one and only unsafe addiction, the tanning bed in wintertime. Apparently, the anti-rejection med (Prograf) and the antibiotic I’m on can make any sun, real or fake, really damaging.  I could get burnt and even get skin cancer much easier now.  I’m beginning the spray tan adventures next week (much more expensive than I thought they’d be!) so I may just have to tell you how that goes.  To have a constant tan, you’d have to go every week, which I am NOT doing.  I paid for 3 visits so it better not turn me orange.  🙂

On another note, my incision has been completely healed for a few weeks now, and I’m still grateful for that every single day.  I’m not having much incisional pain at all anymore, and my energy levels are actually a little higher than pre-transplant.  It’s surprising how I can wake up in the morning and be awake and alert, ready to start a new day.  I’m realizing I used to live in an almost constant state of fatigue.  My doctor told me I’d be surprised to see what life was really like after the surgery, and I’m finding that to be true.  I’m hoping everything will continue to improve as I finish healing.  Everyone says you’re not your your full self until at least a year post-transplant, so I’m excited to see where the road leads…

I’m trying to get a post together for Thanksgiving, so until then… be grateful for every breath you take, every moment you live, every person you meet, every place you go.  And please, give back and give life.

Love,

Amanda

You all are so good to me!

Hi everyone,

Just wanted to check in and say, yes, I’m alive!  I haven’t posted in a few days because things have been getting pretty crazy over here while I’m starting to feel better and have my driving privileges back!  🙂  (And what part of that would honestly shock you?)

Health-wise, my incision is SO close to being closed… just a few more days, I’m guessing.  I’m losing a ton of weight due to the meds and my body’s adjusting – I’m just not that hungry.  Ever.  I’m going to call the team about it this week.  I bought all new clothes, and now even they are getting to be too big.  I’m honestly a little worried since I’ve lost over 20 pounds compared to where I was before the surgery.  We’ll see…

I’ve also been working on getting my sleep adjusted.  I have to be on steroids for life since what I had before the transplant (PSC) is anti-immune, and steroids can prevent it from coming back.  If I would have had something not anti-immune, like hepatitis, for example, I wouldn’t have to be on steroids, but unfortunately PSC can definitely be anti-immune.  And a major side effect of the steroids, even though I’m at the lowest dose, is that it can keep you wide awake.  I take it in the morning, and I’m still wide awake at night, so we’re trying sleeping pills, “sleep hygiene” (eg, don’t do anything in bed but sleep – no TV watching!, don’t do anything intense before bed, drink warm milk, etc…) and lots of other fun stuff to combat that.

In much happier news, I wanted to thank a sweet new friend I made on etsy who made me this beautiful quilt and sent it to me all the way from Pennsylvania.  Check out her shop or order a custom quilt!  What a blessing from a sweet sister in Christ.  Thank you so much Courtney!  It’s perfect and so warm and cozy, too!  🙂

Then, my 1st grade teacher Mrs. H. sent me a goodie basket complete with homemade buckeyes, Hershey kisses, homemade apple butter, and all kinds of good stuff!  She has been so supportive since I started this journey, and she was one of the best teachers I’ve had in my whole educational life.  I’m so glad we’re still in touch!

Check back Monday because it’s a special date and I’ll have a post up.

And check out the homepage of TRIO (Transplant Recipients International Organization) – they used a photo from the Akron-Canton chapter of TRIO’s website (which I made!) and it’s of me and my TRIO friends at the LifeBanc walk/run last summer.  We’re now internationally famous, haha.

Have a great weekend!  It’s super chilly and cloudy here in Ohio.  Almost all the leaves have fallen, and I’m so excited to get my pink tree and Willow Tree nativity set up in just a few weeks!  Also, I start nannying again this week and am so excited to be with my kiddos again.

Don’t forget to check back Monday.

Love to you all,
Amanda