9 months & Bone Marrow

It’s been awhile since I’ve been able to post, but Northern Ireland was amazing.  Absolutely a dream. I was able to push through these barriers and complete my assignments for the course, which honestly, was a surprise to me.  We learned so much on the trip in class and saw so much of a beautiful country. I did catch some kind of infection there which was cured by antibiotics my doctor prescribed for me to take on the trip, and I had a lot of back problems, but other than that, no big health issues. I fell asleep in some classes (thanks, low WBCs) and napped a lot, but I still got through to the end!  My Ireland blog is here.

To understand where I’m coming from, let me tell you a story.  Two decades ago, when I first got “sick,” the doctors were sure I had leukemia. They did a bone marrow test to confirm their diagnosis, and it put fear into a 5 year old that would never go away.  I remember being wide awake and feeling an incredible amount of pain.  I remember hearing the drilling and noises, and I remember everyone talking and me screaming, and the nurses holding me down asking me to “Be still!”  I had no idea what was going on, but I knew it wasn’t going to happen again.  My mom later told me that she could hear me screaming during the procedure and had to go to the restroom and throw up.  My mom’s super strong so it must have been as bad as I remember it to be.  Thank God, it came back negative for leukemia, but the whole situation made my fear of everything doctors and hospitals even worse, and I was scared they’d do things like that to me again.  I got over my fear of doctors and hospitals – I had to – but I never trusted them over any kind of procedure ever again.

Fast forward to December when I had a liver biopsy.  They told me they were giving me sedation and pain medication, but I felt every bit of it, and was wide awake for the whole thing, and it was not a pleasant experience.  So I really have an issue regarding doctors and their exaggerated descriptions of procedures and pain.  “Twilight sedation” or the whole fentanyl/versed combo?  I don’t buy it.  You’re not calm, you’re not asleep, and your pain is not controlled.  The biopsy was the “icing on the cake” that made up my mind that conscious sedation and the like are terrible, cruel ways to try to help a patient.

Anyways, it’s been 9 months since my transplant. Everything is looking good except this WBC issue I’ve been talking about for awhile now.

Last week for first labs home, we learned my WBC level is 1.1, lower than before. My oncologist scheduled my bone marrow biopsy for Wednesday. Remember I told him the only way I was doing it was under general anesthesia, which is where you are 100%, completely asleep.  He wasn’t thrilled about that and tried to persuade me to get it done normally under light sedation, so I begged.  I remembered being 5 years old, being alone and tortured, and I begged some more.  My mom was there and agreed with me, telling the doctor what I was saying was true and I couldn’t get it done like last time.  No procedure room, but an OR.  No light sedation, but general anesthesia.  Thank the Lord, he gave in.

It took a month to get this out-of-the-ordinary procedure/set-up coordinated, but Wednesday is the big day.  I still hold the fear I had as a child because I don’t trust this doctor 100%, and I’m scared how painful it will be.  Was my last experience so bad because I was little and just remember it to be like that, or was it truly horrific?  Was the pain that bad?  I’ve heard some people tell me it’s pretty bad, so we will see.

You know it’s funny I’m more scared of the procedure than the results.  I just want results, period.  I don’t fear what they may be – I just need my doctors to find answers on what is causing this and how to fix it.  Whatever the diagnosis may be.

Please pray for strength, peace, and answers.

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
Isaiah 43.2

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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

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

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