Urgent: All Over Again

It was Wednesday.  We had just left the Cleveland Clinic, and I told Mom how excited I was that I wouldn’t have to come back for three whole weeks!!  It had been months since I got a break this long, and with the splenectomy behind me and the fact that it was my one-year transplant anniversary, it felt so good.  I knew the CT scan and ultrasound could come back with abnormal results, and I knew there was an ongoing issue with a vein to my liver narrowing, but I wasn’t worried.  It was a good day.

Then Thursday, I got a phone call.  Funny how one phone call always has the power to change so much.

It was my transplant coordinator.  The ultrasound showed there might be more narrowing, but the radiologists and surgeons discussed my case and decided they’d need a different kind of CT to be sure about the plan of treatment.  I had to come in Friday for an abdominal CT because the matter was urgent.

Phone calls like that have been getting familiar, so the future scenario had definitely crossed my mind.

I went in Friday for the CT with IV contrast – no big deal.  I’d already had a few earlier this month, and dozens more in my lifetime.  But at the end of the day, I got a phone call, again from Molly my transplant coordinator, saying the narrowing has worsened and the portal vein and left renal vein to my liver are too constricted.  There isn’t enough blood getting into my liver, and my surgeon, the head of transplant at the Clinic, and a couple of interventive radiologists have discussed my case.  They all came to the agreement that I need to come in as inpatient Tuesday morning (Monday is Labor Day) to begin a process to open the veins.  Tuesday, they will put me on heparin therapy to thin my newly platelet-loaded blood, and Wednesday morning they will put me under general anesthesia (thank goodness) while they go in through my liver and feed a catheter through to the veins in question.  They will then inflate balloons in the veins and pull out.  If the veins stay open on their own, that’s great.  If not, they will put stents in to keep them wide open.  Knowing how I handle anesthesia, I’ll be in and out for the rest of the day, and then Thursday, I will have an ultrasound to see if the veins are doing well.  If they are, I can go home.  Let’s pray they will be.

So that’s my week.  And there goes next week.  I was supposed to start driving, go back to my nanny family, and basically get on with my life without my spleen, finally feeling good.  But sometimes life has other plans in store for us, so I have no choice but to again, bow low and do what’s best for my body, reluctantly conforming the rest of my world to oblige.

Your prayers are so greatly appreciated.  This is a risky procedure, plus there are so many risks to undergoing anesthesia.  And lately I’ve been completely emotionally drained, and honestly, really struggling. Having a hard time staying afloat right now.

Thanks for always being here.  I love you all so much.

Amanda

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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

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.