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

Milestones

Wednesday’s Liver Clinic went very well.  It was a good visit with the surgeons (including Dr. Peter!) and my coordinators, Molly and Christine.  Plus, I got some very good news.  I think bringing them a box full of brown butter pumpkin spice cookies didn’t hurt either.  🙂

First off, instead of weekly visits, this was my first “second week” visit, and instead of coming back in another two weeks, they let me schedule my next visit four weeks out!  Yay!

Next, they liked my split-open incision since it’s healing so well.  (Slowly, but surely!)  We’re still doing wet to dry dressings twice a day, and probably will for a few more weeks, but they’re working!

Unfortunately, my Prograf (immunosuppressant medication) blood serum had gone from 5 weeks steady to a quick decreasing, so the docs had to increase my dose from 1mg to 2mg.  I’m not happy about that, but they say it all depends on blood level, so my Prograf side effects shouldn’t increase.  We’ll see.

But more good news – the surgeon who did my surgery wasn’t there Wednesday, so I got to see another (plus my favorite resident Peter!)  Apparently, this doctor was pretty lenient because most docs stick to a 3-months-post-op no driving rule, and some even go towards 4 months, but this doctor told me since I’m off pain meds and doing well, I can slowly ease back into driving again!   At just 6 weeks!  He said to practice driving with someone – just around the neighborhood, etc. to make sure it wasn’t painful and I was comfortable with it, so last night, Mom got in the car and watched me drive… Yes, just like we did almost 7 years ago (when I first learned to drive!).  I was a stellar driver, and pushing the pedals didn’t hurt my stomach, so I passed and am once again a driving citizen.  Hooray!

Oh, and labs – I’m officially onto weekly labs instead of twice/week labs!  My arms will surely appreciate that.  Plus I will be able to sleep in a little later now an extra day a week!  Since the surgery, it seems like every week I’m sleeping more and more, but the docs say it’s perfectly normal and will get better.  I have a hard time falling asleep because of the steroids, but once I’m asleep, I’m gone … and for a lonnng time!

So lots of “ups” on Wednesday.  I can’t believe I’m past 6 weeks.

After each visit, we eat in the huge wide-selection, all-healthy-foods cafeteria, but before we ate on Wednesday, we went to the Clinic’s new(er) Kelvin & Eleanor Smith Rooftop Terrace on top of the Miller Family Pavilion.  I had been to the Clinic so many times and never made the time to get up there, and apparently it had “breathtaking skyline views” and was a beautiful, relaxing place where lots of activities took place like yoga, chair massages…. just sounded nice.  Anyways, when I was in the hospital, everyone who visited me always seemed to go there, the on-hold message I get every time I call someone at the Clinic tells me about it, and I just figured any good, full-time Clinic patient needed to see what it was all about.  Plus, it’s not that “new” anymore, so my absence was feeling pathetic.  It was really pretty – not quite what I was expecting.  It has a serene indoor part and then you can walk outside and see the entire Cleveland skyline.  I tried to take a picture, but no matter where I went, I had to be behind glass and this pole was always in the way.  Anyways, here’s our lovely smog-covered, typical-gloomy-skied city of Cleveland…

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And, I had to take this picture of my mom – she looks so cute, doesn’t she?  And then she had to take a picture of me, which is just here out of theory.  It’s not a particular favorite!  I desperately need a hair cut!  (We’ve been handling other priorities lately!)

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Yesterday, I went out with a friend to see a movie, and afterwards I went over to her house and played with her boys (the two I’ve babysat – and adored – since birth!)  Then my Poppop and my other friend came over and Mom made dinner.  It’s so nice catching up with everyone and feeling like I’m “a part of life” again.  Each day is getting better.

Here’s me and my boys 🙂

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Today I had an appointment with my pain management doctor whom I’ve seen for almost 2 years.  They stopped my fibromyalgia and back pain meds with the transplant, and I definitely need some help now that the focus is off the transplant pain.  She’s head of pain management at the Cleveland Clinic’s Hillcrest Hospital, and she’s also an anesthesiologist.  She’s really good and really kind.  She volunteers with all these youth organizations and really gets involved with presentations, giving back, etc.  I’m so happy I found her. Anyways, she had a cancellation and was able to see me today, and we’re trying to get some fibromyalgia meds back onboard, although it’s so hard because everything I take (even over the counter!) has to be cleared through my transplant coordinator who clears anything questionable with the transplant pharmacist.  The reason is, drugs can alter my other medications (like my antirejection/immunosuppressants) and that could cause rejection, so this new post-transplant life includes being really careful about medications.  It’s annoying, but important.  Also, a side effect of one of the immunosuppressants is kidney damage, so we have to be careful with meds cleared through my kidneys, too.  Thankfully my kidney-related blood levels have been really good, but they’re still very cautious…  (Oh, and the long term steroids can cause bone problems like loss and osteoporosis, and the immunosuppressants make me more susceptible to cancers like skin cancer!  That’s why I don’t like being on these new meds.  But it’s that or die – literally – so I shall cooperate!)

Before my appointment, I shopped at Beachwood, and Mom picked up Panera while I was in with the doctor (yum!), and then she dropped me home where I grabbed my car to exercise my long-missed driving privileges!  I had an interview with a new nanny family, and then I dropped off and picked up my new meds at Target, went to Macy’s, and pretty much wore myself out.  (Who had a feeling that would happen?)

I wanted to share all these great things with all of you who have followed my journey so closely.  Thanks for your care and prayers!  Never ever forget where you started and how far you’ve come.  I know I won’t.  🙂

Amanda

PS – Thanks for all the love – this was a such a sweet surprise this week from my friend and her parents!  Yum!

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Liver Transplant Update #7: Sunday – Getting Better!

Typing this on my iPhone because we are not sure which bag my iPad is in, and getting out my laptop seems like a lot of work (okay, and I’m not sure which bag it’s in either – funny how I couldn’t care less about all the bags I packed)…

And thank goodness for the holiday weekend movie marathon on USA… 🙂

Today has been a busy, crazy day.

First day on a normal diet, losing literally liters of fluids I’ve been retaining, got my central line (triple lumen) taken out, my little incision drain has just been flowing, no more IV pumping – just a peripheral line for meds and fluids. I have probably lost like 10 pounds today, no joke. The doctors want to send me home Tues or Weds, and I’ll come back up a week later for a checkup then a week later to get my 50 staples taken out. I’ll get labs done 2x/week at home. Sounds a little crazy… the doctors say I’m progressing so much faster than normal while I feel like I’m running a never ending marathon. The meds make me hot/cold all day, I’m a fake diabetic from the steroids (to decrease my immune system) which will be reduced in 3 doses, I’m on “self meds” now which means I learned my med list and schedule and give myself my meds as the schedule goes on. I’m kind of brainstorming to say things that are happening so I’m all over the place – sorry!

Thank you to Peg & Wil, Leslie, and my Wed PM Bible study girls for the flowers/balloons/monkeys that have come here and to the house. Thanks for all the cards pouring in, the phone calls, emails, blog comments… my parents and friends relay all the messages and everyone asking and checking and praying… Wow, thank you. And God is moving in a huge way, like I said… the doctors said I’m doing awesome. Of course I’m worn out and feel like I’m sitting here getting gross and rotting in the hospital, but now that my central line is out, I get to take a shower. (Which honestly sounds potentially painful because of how huge and nasty this incision is) I’m scared to go home because of all of the unknowns, the new rules, the new meds, but I’ll have a transplant coordinator on call 24-7 for any questions. What a relief. And they say my swelling is much lower than most people and going down well, but my honest opinion is that I feel like a whale. Gross, right?

So that’s about it… hopefully I’ll keep draining all this fluid and getting up more and more tomorrow. It’s hard work recovering from this! And the rules, my goodness. I can’t lift over 5 pounds for 6-8 weeks, 10 pounds for 6 months. I’m immunosuppressed, and they said it could be up to a year until I feel “normal” again. I’m hoping not. But we’ll see. I’m not done fighting yet!

I love you all so very much, and thanks for holding my hand and lifting me up through this incredible journey. They said I’d have trouble sleeping, but there’s a peace here all the time. May you feel some of God’s caring love, too, and rest in it for awhile. 🙂

One day at a time…

Amanda

Liver Transplant Update #6: Saturday

It’s Saturday. I’m supposed to go home Tuesday-ish if I can keep getting up and resuming normal activity. Sometimes easier said than done. Yesterday was another hard day, and my doctors decided to rule no visitors because I don’t have enough time to exercise, it can be overwhelming, I am very immunocompromised, etc.
My new liver is functioning great, and my incision looks “fabulous,” is what the doctors told me this AM.
I’m just eager to get up and wash my face and change into a different hospital gown (my incision leaks a little). My dad had last night covered here and stayed with me this AM, and my whole immediate family should be here by early afternoon. I’m excited to see my sister for the first time since I hugged her goodbye early Tuesday in the middle of the night.
I really miss my Haylie girl!
Still on soft liquids, yuck. Enjoying all these surprises that have been appearing at my room and all the cards that’ve been sent either here or to my house. All of you are wonderful! hoping it’s only 2-3 more days in here! I have to show the nurses I know my new meds and their schedule, but that’s not hard. Wondering if I’ll be able to sleep upstairs in my own bed when I get home or if I’ll be stuck on the couch for awhile…lol
Just a random update so you know I’m doing okay 🙂
Love,
Amanda

Turning 23

Poppop and his granddaughters

Poppop and his granddaughters

Me & Sissy

Me & Sissy

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The family

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Me & Grandma

Me & Grandma

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Nah, this cake didn’t last long 😉

Me and my "Aunt" Vonnie

Me and my “Aunt” Vonnie

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Besties

The guys

The guys

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Nikki & her hot boyfriend

As I turn 23, it’s a little obvious my life is far from where I thought it’d be.  There’s a lot going on I would never have expected or even been able to imagine 5 years ago.  Yet here we are.  I wasn’t too keen on the idea of having a party this year, but my mom encouraged me to at least invite some close friends and family for a dinner out at Bravo Cucina Italiana, my favorite restaurant.  I have to admit, it felt good to dress up, go out, and have a wonderful night with some of the people I love most, celebrating not just my life, but life in general.  Who knows where I’ll be in a year, who knows where I’ll be tomorrow.  This life is all we have, so soak it up, love it hard, and don’t be afraid to really live like there’s no tomorrow.

Thanks to everyone who came to my party and made my night special, and thank you to those around the world who are reading this blog and have been sending get well and birthday cards.  I am so blessed to have all of you in my life.

Much love,
Amanda