7 Month Update + News

Today marks my 7- month transplant anniversary.

It’s been quite a month.  I’ve had a lot of highs and lows with my labs, a lot of new medication side effects, and my back problems have gotten so much worse, so I’ve been seeing new doctors for that.  We’re also trying new breathing treatments to prevent PCP (a dangerous type of pneumonia) since my white cell count is so low, and my doctors have adjusted several meds this month as well.   Additionally, I’ve been in the ER twice, once with back pain, and another time with something we think may be an effect from the back pain.  (The picture above is from the ER.)  I’ve started acupuncture and begun my osteomanipulative treatments, so I’m hoping for some relief.  Sometimes I wish I could just have one week without seeing any doctors or practitioners, one week without any phone calls or labs or paperwork.  Is it sad that this is my dream?

Even at that, I’m tapping my foot and twiddling my thumbs, just waiting for some kind of normal life to return. My liver is doing great, but even a slight fluctuation in my enzymes really upsets my body. I get so tired all I can do is lay in bed. Then we get them under control, and I’m better than ever! The ups and downs are very frustrating to me. As is dealing with the side effects of these meds, especially the Prograf (anti-rejection/immunosuppressant) and the Prednisone (steroids). Everyone says things stabilize after the first year, and I’m aching to get there. September 1!

On another note, I am still working on starting therapy for the post-traumatic stress disorder. I have nightmares and flashbacks, and I’ve learned this happens in a percentage of transplant or surgery patients. I suffered from this before when I initially got sick as a child, so I was predisposed to get it. Once I start therapy, I hope to get out of this state of mind.

I’ve been continually trying to share my story with anyone who will listen. I’m still amazed at what God has done for me, and that’s the bottom line. Yes, I am still adjusting to this life, and some days are a challenge, but that doesn’t matter in the whole scheme of things. I’m a walking miracle, and if you’ve followed my story, I’m sure you’ve seen it as well.

So I’ve decided that I’m not succumbing; I am rising above. I’ve made that choice.
I have so many wonderful joys in my life and so much support here for whatever may happen. I’m so grateful.

And on this high note, here is my “News” – I want to share that I am definitely going to Ireland in May.  All my doctors have cleared me, and I’m absolutely beyond excited for this 2-week trip with my nursing school.  7 months ago, we didn’t know when I’d ever be able to travel again, and now I’ve been completely cleared to go out of the country at that!

Thank you for sharing this journey with me and for your prayers. I pray for all of you, as well.  🙂

So thankful for this today…

Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

Romans 8.35, 37-39 

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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

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

Stupid incision

Wednesday, while talking to Infectious Disease about unrelated questions, I asked Dr. Avery to look at my incision. (Which I’ve been convinced for a week is getting infected.) She decided to swab it and send it out for cultures. Sure enough, I found out today, while 80% of my incision has healed, 1 of the 2 open spots has enterococcus. They said don’t worry unless it gets worse – pain, redness, discharge, odor. Well at 12:30 after finding some jammies to crawl into, I decided to put a fresh dressing on my incision. The infected spot had grown into the dressing I put on 6 hours prior, and well I’ll save you further details. I called the coordinator on-call, Jackie, and she said get to the CCF ER where they have the culture records and can prescribe the ointment and antibiotics I needed in the first place. Being immunocompromised, I told her how frustrating it was that no one just erred on the side of caution and treated it earlier. Oh well.

Currently on the hour drive there and already can’t wait to go home.

Two steps forward, One step back

Wednesday was a long day for us, but this is all part of the journey, so here we go…

(As I munch on a farmers market brownie that has an odd taste like it was sitting on pizza in the fridge or something?)

Thanks to everyone’s prayers, Haylie was fine after taking my antiviral pill.  She stayed overnight at the vet for fluids and observation, but we were able to pick her up before heading to Liver Clinic (Wednesday afternoon on CCF’s transplant floor) Look at her little bandage where her IV was (below). Poor baby!

Liver Clinic (Wed) was predictable.  You set up appointments beforehand with the transplant social worker, transplant psychiatrist, or transplant coordinators – whomever you want – plus of course the surgical team. To try and condense my story, the surgeons said my incision looked great, even though it has 2 small spots which are questionably “too open” in my opinion. They surprised me by taking out every other staple and replacing them with Steri-Strips.  The staples were really pulling and being uncomfortable, so I was grateful even to lose half! Then there are the 2 stitches, one for each JP drain that was collecting serosanguinous fluid while in the hospital. Peter, our adorable, caring, Australian fellow removed both stitches as well, and other than all that action on my abdomen leaving me sore, it all went great, and I should be able to get the remaining staples out next Liver Clinic. One week!

My pathology report on my old liver came back and we were elated to hear the news. Thanks to your prayers and our good God, the chemoembolization DID get all the cancer in the liver, and none of it spread to the lymph nodes, which would have been a big concern.  The report did, indeed, confirm I had a serious case of Primary Sclerosing Cholangitis, and it also showed my new donor liver was in tip-top shape!

I met my post-transplant coordinator who will follow and help me for the rest of my life, and she is such a smart, sweet woman.  Her name is Molly, and she works behind the scenes to make life as a patient easier. I met her co-worker, too, who covers for her sometimes, and after passing by my scheduler in the hall, the 4 of us got into a 30 minute shopping conversation about deal websites, flipflops, and tips to make my wardrobe work with my massively swollen abdomen, other than racking up a tab at A Pea In The Pod or Motherhood Maternity!! (Joanna, my scheduler, says it’ll be a month or so until I lose my “baby bump”… not funny!) anyways, everyone says you’d become like family to your team and we definitely have!

We left around 4p with everything going well. I passed Dr. Hupertz, my peds GI, while waiting for Mom to pick me up, and she raved at how well I was doing and encouraged me like she always does.

The car ride was great since I was able to sleep the whole way, but things got bad when we got to my driveway and I saw that the whole side and bottom of my cute lavender top was wet.  I stood up, and fluid literally started spurting from where the doctor removed one of the drain stitches.

Nice.

It was after 4.30pm by then, so I had to page the” liver transplant coordinator on call”, which thank goodness was Molly! We discussed the amount of fluid I’d lost (rolls of paper towels, absorbent medical pads, etc.) and decided a precautionary trip to the ER would be the best idea.

Fast forward to 2am, after some Zofran, morphine, and dilauadid … Labs.. CTscan… All looked normal for a post-surgical patient, so still dripping and oozing, they finally let me go! They found one abnormality in the CT but they were going to clear it with my surgeon, Dr. Fred, in the morning. (And yes, it ended up being normal)

Now if we could just get the fluid to stop leaking… (Although it’s better out than in!)

Oh and we saw 2 separate friends/families we knew in the OR. Please pray for their peace and healing. We already know God is good!

So fast forward to Thursday AM – Mon and Thurs are lab days where I go to my local lab and they overnight some of the rarer tests to the Clinic to save me 2-3hrs twice a week. I barely got to the lab awake, and by then Mom had talked to Molly who had talked to the surgeons… They wanted to see me, yes, back in Cleveland.

Long story short, Dr. Peter had to restitch the drains (even the non-leaking one – just to be sure) and hopefully everything will be healed enough by Wednesday to get the staples and sutures out.

Today, Friday, I’m feeling better – tired and sore, but better. My cousin and her boyfriend came over last night, Grandma and my aunt were here, and Haylie finally got her much-overdue haircut.  I have more visitors coming Saturday and Monday, so that’s exciting.  They help pass the time and it feels like forever since I’ve seen everyone.  I’m hoping in a week, I’ll be stitch/staple free, more healed, and up to a little more.

One day at a time!


(I’m off to take advantage of my Netflix and Roku box while I just might fall asleep!)

Oh and a before and after of Haylie – first confused, missing her mommy, then in the hospital herself, seen here with a bandaid from her IV from her overnight stay at the vet, scruffy hair from Mommy being in the hospital for a week… The the after picture:  after going to Aunt Nancy’s and getting a bath, a haircut, and a festive little bandana.  She feels much better now that she’s all pretty (and back to her sassy self)…

IMG_0820fsx IMG_0831fsx
Thanks so much for your prayers and cards.

xoxo
Amanda & Haylie 🙂

Just got back from the ER

With a platelet count of 25,000 (healthy levels are 150-400,000), I’ve been having serious bruising and nosebleeds lately.  Tonight, I called the liver coordinator on call at the Clinic and she said due to the extreme amount of clots coming out of my nose, I needed to go to the ER.  So there I went.  They treated me by doing labs and giving me Zofran for my nausea, and they soaked cotton balls in neosynephrine and put them in my nose for a long period of time until the lesions finally stopped bleeding.  

Needless to say, this was neither fun nor comfortable:

Fixing a nosebleed

But they gave me Ativan and Zofran so it worked out.  🙂

Apparently, neosynephrine has a vasoconstrictive property which can be used for this purpose.  So, per doctors’ orders,  I’m now back to sleeping with the humidifier in my room (yes, even on July 31!) and being extra careful.  My platelets have never been this low, so this is not a positive thing.

Still waiting for my new liver…  I’m 3rd on the list, but remember I need a smaller one, probably from an adolescent.

Pray for strength and courage for us to keep waiting…  It’s getting harder each and every day.

Love to you all,

Amanda