Good, good news!!

Just wanted to check in really quickly and say that thanks to the prayers of you and so many others, I had so many awesome reports with my doctors today!

My labs are nearly perfect.  For the first time in my life, my red blood cell levels are normal.  My WBCs are still normal, and my platelets are just slightly elevated (which is fine).  No more anemia! Lots of immunity!  It’s been absolutely unbelievable what getting my spleen out has done for me.

My surgeon is letting me stop my prednisone, and my oncologist is letting me reduce my aspirin.  Stopping the prednisone is huge because that crazy drug gives me so many side effects, including an appetite you wouldn’t believe.  Also, it poses a lot of health risks with long term use, so I’m excited about getting off of it.  A risk is rejection, but with my Prograf and careful lab monitoring, we’d definitely be able to catch and fix it before it got bad.  I’m not worried about it.  Another risk is that the prednisone has been shown in some studies to prevent PSC (primary sclerosing cholangitis, the liver disease that started it all for me) from recurring in the new liver, but the research isn’t solid at this point.  So again, I’m not worried about it.

Then my transplant coordinator, Molly, had a great idea – to lose the prednisone weight I’ve gained (although I do weigh a lot less than I did a couple years ago) to see a dietician and start a strict 1500 calorie plan with very specific food intake. And exercise.  And water.  Pray for me!  At least it involves a very sweet iPhone app – “My Fitness Pal.”  See, it’s even a pal.  That makes it seem more fun.  🙂  Exercising with my fibromyalgia has always been tricky (unless it’s in a warm-water pool) but we’ll see how things go.

So then we talked about my incision which is perfectly healed.  I have a lot of pain, but my surgeon said it’s normal for this stage in the game.  Then we discussed the numb “pouch” below my scar, and my surgeon explained that because the nerves to them muscles were cut, it will never be able to firm back up.  So hopefully when he gives me the OK we can look into reconstructive surgery.  I wouldn’t care at all except sometimes you can see it through shirts and that bothers me.  Plus, what’s another surgery?  (I’m actually serious.  I am not afraid of surgery.)

My liver enzymes are great, and my ultrasound showed that my stent is in place and the profusion (blood flow) is excellent.  Yay!

So good news all around, and my energy levels have been very good.  I’m so grateful to be at this point.  It sure took a lot to get here, but I’m so thankful for each and every new day of renewed health.

Amanda

I’m leaving!

Last weekend, I was in Disney World.  It was my first real “trip” since my surgery, and it actually went really well.  Thanks to my (still!) critically low WBC level, I wasn’t feeling 100% but I was really surprised how much I was able to do anyways.  We had a great time getting away, spending time at one of our favorite places in the world.  It was nice to forget about a lot of the everyday problems we deal with, and for me, it was so great to get away from the insurance, phone calls, home nurse, appointments, etc.

Sunday – in less than 48 hours – I will board a plane to Ireland for 2 weeks’ study of nursing and healthcare.  This is the trip I mentioned I have been dreaming of for years, and after a lot of back and forth between my doctors, I have been cleared to go!  I am a little scared to see how I do – again, especially with the WBC situation right now – but I have high hopes and am really looking forward to it.  I work with the disability office at school, and they were able to meet with my instructor and I to discuss possible options should anything go wrong.  As I said, I’m feeling really good about it.

Nothing “new” health-wise is going on, just waiting to handle the WBC issue when I get back.  I have a bone marrow biopsy in store for me, yuck.  But, bottom line, we need answers so badly about this.

So I’m leaving for a couple weeks and will update you when I return.  My Ireland blog, if you’d like to follow it, is here Please stop by and say hello!

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

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. 🙂

Dehiscing & debriding

Since the parents don’t like me posting pictures of my incision on here…. close your eyes and imagine 2 big craters along an otherwise healed over Mercedes Benz shape – a “chevron” they call it.  That would be my poor, still-swollen abdomen.

Rewind to that video I posted below.  Literally 1 minute later, I went to change the dressing on my incision, and it seemed to be extra yucky and oozy and had well, to put it nicely, an odd “odor.” Being an almost-nurse, I knew this was cause for alarm.  Two days prior, my doctor swabbed the two dehisced (torn open) spots, sent them to the lab, and one came back infected.  They said it wasn’t a big concern unless the wound itself looked worse or I developed a fever.  So afebrile (fever-free), I went on with my week, no problems.  Then came 1am on Friday night, or umm, Saturday morning.  Late Friday.

With this new situation on my hands, I had no choice but to call the liver coordinator on call and see what I needed to do.  After going to the ER last week when the drain stitch was removed and I developed a major leak, that was the last place I wanted to go to again.  But, the coordinator assured me I needed to get to the ER – not my regular, local ER, but of course the Cleveland Clinic ER so they could access my entire chart and the swab culture results.  Right.

So we drive an hour up, me and my mom half asleep.

To make a long story short, lots of dilaudid and morphine and nubain and bendadryl later….  the ER resident cleared me, the ER head doctor wasn’t sure, and we ended up waiting till around 7am when the staff transplant doctor would come in to round and could stop by the ED to check out my incision, sort of like a 3rd or 4th opinion, just to be safe.  After all, a staff transplant doc would know the situation much better.

Without any warning, the doctor – whom I’d never seen before – came in with a familiar resident at his side, and he immediately got out forcep-tweezer-things and started pulling out everything even close to my dehisced spots.  He was debriding any infection, relentlessly and forcefully, that I figured out.  My mom was mad, and I was even madder.  “What are you DOING?!” I, tired and drugged, admittedly demanded. “Well if I told you, you wouldn’t let me be doing it.”  (Excuse me?!) I begged him to stop, but by the time we were done arguing, he was done.  I again used my demanding voice, this time in a helpless plea for drugs. He rudely told the resident to pack my incision (packing debrides wounds), and out he went.

Bad experience.

Bad experience in a dirty ER at the place that’s supposed to give you “World Class Care” and is ranked #1 in so many specialties, #4 hospital in the country, #1 transplant center in the area, maybe the region.  Right.

The resident was one I’d known since being in the hospital, I forget her name but she is from Spain, and she’s very sweet.  I looked down and couldn’t believe what my stomach now looked like – instead of a yucky looking line with a little spreading, I now had two craters – one round, one long, and the keywords here were deep and open.  Pink, shiny tissue, deep and wide.  All I knew was this was several steps away from being previously stapled together, neatly healing in a straight line.

No antibiotics because the doctor picked out all the infection, and no antibiotic ointment as suggested by the doctors earlier in the week, because they like to keep the incisions dry.  While with the packing, they want to keep them wet.  Confused?  Yes, please.

So fast forward to now.  We’ve been doing wet to dry dressings at home, twice a day, with our stash from the ER – packing strips, sterile saline, abdominal paddings, applicator sticks (super long Q-tips) and lots and lots of tape.  It’s been a nightmare.  Since my stomach is so swollen, I had to teach my mom how to do the packing and dressing changes because I can’t see the holes when I lay down.  Haha

They finally decided to get CCF Home Healthcare in today, and now someone is coming twice a week to measure the holes and make sure they’re actually getting smaller.  Today I measured in at like 1.4cm deep by 4cm, the other I’m not sure on (over 10cm?) but she said it looked like a shark bite!! Thanks.

Kind of like people trying to compare C-section scars with me (okay, you had 12 staples – how is that like the 50+ I had?), saying I’d look cute pregnant (I’m still swollen and I’ve been told multiple times I’d make a cute mama… inappropriate), or the doctors who won’t give me pain meds because “By 1 month post transplant, patients only have higher chances of getting addicted.”  Yes, but does the average patient have 2 craters in her abdomen?  Didn’t think so.  My home healthcare nurse said I should at least be on fentanyl patches since I’m allergic to Percocet and Vicodin but I doubt it.  So I’m toughin’ it out. For now, at least.

Good news, though – the home healthcare nurse said the more protein I consume, the faster this will heal.  She said if I double or triple my protein intake (which is minimal seeing my appetite is zero) that I’ll be in one piece in no time. So what did Mom do today?  Went and bought be a ginormous container of protein powder!  I ate tons of chicken for dinner and then downed 34g of protein in the form of a nasty, nasty vanilla-flavored milk cocktail.  26g in the powder, 8g in the milk. I love milk, but the powder is just intolerable.  Unless, of course, you have two holes in your stomach.  I’d practically drink tar to make them go away!

So that’s the update… Feeling better but still pretty much homebound due to my painful dehisced incision and immunosuppressed status.  Plus my naps, twice/week labs, twice/week nurse visits, and weekly/bi-weekly Clinic appointments keep me pretty busy.  🙂  My doctors added a 2nd immunosuppression drug to my regimen this week, but I’m wrapping up an antifungal pill (which is disgusting and has to be sucked on 4 times a day) and only have 2 more months on an antiviral.  Also by then, my body will have adjusted much better to the 2 immunosuppressions I’m on, my incision will be healed, and I’ll be out and about with more energy than ever.  Hopefully!  I’ve been to a few stores (and shopped online a lot!), I’ve been able to start going to church again, and my schedule for October is filling up with a few fun outings!  Watch out in November – I’ll be better and driving and ready to go! By the holidays, I hope to be almost great, and if all goes well, back to school January 10!

So there’s your update.  The cards and calls and emails and everything are all still coming, and I am so grateful for all of your continued prayers.

Love to everyone taking the time to read this and care about me  🙂
Amanda

Kelly Clarkson – Up To The Mountain

I went up to the mountain
Because you asked me to

Up over the clouds
To where the sky was blue
I could see all around me
Everywhere
I could see all around me
Everywhere

Sometimes I feel like
I’ve never been nothing but tired
And I’ll be working
Till the day I expire
See sometimes I lay down
But no more can I do
But then I go on again
Because you asked me to

Some days I look down
Afraid, afraid I will fall
And though the sun shines
I see nothing at all
But I hear your sweet voice
Come and then go
Come and then go
Your telling me softly
You love me so