Home!

Well friends, I finally made it onto oral antibiotics (praise God!) and my WBC level increased so I was discharged on Saturday. I was excited to get out, and I was thankful I didn’t have to have a port inserted for IV antibiotics.  Also, I was so glad I didn’t have to sit around in the hospital until my counts raised.  Surprisingly two Neupogen injections rose my WBC from 1 to 4(!!)

I have been very weak this week and am very swollen for some reason, but I don’t have any pneumonia symptoms anymore.  I don’t think I ever really did, though – other than the fever and chills the day I got admitted into the hospital.  I’m grateful my symptoms weren’t worse than they were, and I’m also glad the pneumonia didn’t become life-threatening.  With my immunosuppressant medications, the illness could have easily gone out of control.

I was on so many medications last week that a lot of the details are sketchy, but I do remember some great doctors, nurses, and friends.  I remember all of my hospital visitors and Danielle spending 2 nights with me, sleeping in the uncomfortable chair.  The cards, flowers… they, like they were a year ago, helped keep me encouraged.  Thanks, everyone.

So once my oral antibiotics are finished (Saturday) I’ll be past the pneumonia, thank God.

Now, the next obstacle is the splenectomy.  Next week I’m meeting with one of my liver surgeons who is the best choice to take out my spleen.  I’m also meeting with my oncologist and my infectious disease doctors, too.  All three are involved in my case right now.  I’m hoping to have the surgery scheduled at my visit Monday, so we’ll see.  It’s a big surgery, and I cannot get it done laparoscopically since my spleen is so large holding all of my blood cells.  That means a long hospital stay, long recovery, more pain, and more destruction to my poor abdomen! I’m not excited about it, but if this is the answer to improving my low white blood cells (and low platelets) then I think it will be worth it.

I have had dangerously low platelets since I was diagnosed with liver disease as a kid, and after my transplant, my white blood cells completely took a dive to “critical level.”  Platelets enable your blood to clot, while white blood cells protect your body against infection.  Deficiencies in both are big deals, and with the platelets, we just hoped they’d improve with the transplant.  They did a little bit – more so in the beginning – but now they’re dropping.  Either way, the biggest issue is the white blood cells.  I caught pneumonia because of them, and now my doctors are wanting to get my spleen out now as it “sucks up” and hides all of the blood cells my body is needing.  The worry is I could catch something far more destructive than “just” pneumonia.  So without my spleen, nothing will be completely filled up with my blood cells, or so is our hopes.  And if this doesn’t work?  We’re pretty much out of options.

When I am afraid, I will trust in you.
Psalm 56.3

5 Star Accommodations!

Here we are again, 4am and wide awake. This time my best friend Danielle is beside me, and we are both enjoying our “five star accommodations” here at the hospital.

Yesterday, my oncology and infectious disease doctors, as well as my PCP, came by to update my status. Everyone ordered more tests (xray, ultrasound, more blood cultures & labs, a swab) which have so many pros/cons that I’m trying not to think about them.

On another side, today I have 5 total visitors coming which will be lovely. 🙂 Yesterday my Grandma and sweet Aunt Tammy came to visit, and that was so nice. Then Danielle hung out with me last night and is here staying with me.  My mom has been here most of the time, too. Its great to feel such support. Talk soon! 🙂 Amanda

Just an update…
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

New week, new prayer requests!

Monday’s about to begin, and I’m excited!  Not like I can go much of anywhere or do too many things, but I’m almost two weeks post-op! I am meeting with my surgeon Dr. Fred (his name is hard to pronounce so he told me to call him that) on Wednesday, getting 2 of my stitches out, and finding out what the pathology report revealed.  Whenever they are in your body or remove anything from it, they always send it to the path lab to find out whatever info they can from the samples they have.  They’re examining my entire previous liver, and because of the tumor, we are praying they cannot find any more traces of it.  We’re also praying that there was no cancer in the lymph nodes because that would mean it has probably spread. It’s possible, on the rarer side, but it happens.

First important order of business – if you are getting these updates on FaceBook, PLEASE start commenting here on my regular blog, not on Facebook.  I don’t have time to check it, and honestly, I do not like being on that site.  It’s super easy to leave your comments/ likes here instead.  🙂

Next order of business … visitors!  
YES you may come. Don’t feel like you’re intruding – I love you all and have already enjoyed the people who have come!  Remember, no germs, because I’m immunosuppressed/immunocompromised, but otherwise, text/email/comment and we can plan a day/time.  Just no kids this week – I can’t wait to see my angels, but I’m hoping to see them first after my staples are removed on 9/22 and I’m a little more immune-solid.  🙂

I’m still almost in shock at what has happened in less than 2 weeks – especially when we just got a call and the coordinator, Paula, who said the transplant might not happen till wintertime now just due to my score, size, etc.

Still sore as the incision heals, and I feel like it’s raw since certain areas haven’t scabbed over yet.  Just a gross feeling.  Still losing water (yay!).  Still soaking the whole experience in.  Still so very grateful for all of the love and support from my dear friends and family.

Love you all,

Amanda

Visitors!

Visitors and lots of other fun stuff!

jenMe and my bestie, she checked on me 24-7!

rnMe & Tiffany (I think?) a fab nurse!

janetshariAunt Shari and Janet came to see me

uncle mikeUncle Mike, what a surprise!

rontamRonnie & Tammy watching over me.

huptertzMe and my peds GI Dr. Hupertz who has kept be going this far!

tumblr_l8mb6yRhmU1qc81o3o1_500Me and my sweet PCNA (NA)

 

Liver Transplant Update 5: Getting Up

Today has been a special day with lots of visitors, and I’ve been able to pull myself up and not only stand, but walk! The surgery was late Tues into the first hours of Wed, and they kept me pretty out of it yesterday. Today is Thursday, and I’m hoping one of these days will be my big “turning point” although all the doctors are shocked I’m barely 2 days post-op, so maybe I should just be thankful!
With the forced activity, removal of a drain, and switching of a PICC line, my body feels done for the day, but my mind is still racing from this insane experience. And like I said, all these special visitors – it’s been such a nice day despite it all.
I ate breakfast with my bestie, saw my peds doctor (who is no longer on my case), and then had surprise visits from my ex’s uncle and mom, at separate times, plus my aunt’s sister who works at the Clinic.
I’ll have to write more when I get my iPad or MacBook Pro – typing this on my little iPhone is making me sleepy! 🙂
The doctors have all but beaten me up, but I think that’s just the territory that comes with the surgery. Hoping to get onto “the other side” sooner than later!

xoxo
Amanda