My Journey to A Miracle--Part 5

Life after Transplant

Contrary to what I believed, life after transplant was no walk in the park.  Just because I was released from Nashville didn't mean I was released from all possible complications.  As you'll see, I had more than my fair share of hiccups along the way.  I was home but I was not healed.  Not yet, anyway.  I had a healthy new liver but my body was still trying its best to adjust to this new gift.  I realized that getting a new liver was not an immediate fix for my poor health.  I kept having to remind myself that in time, I would eventually feel better.  However, in those first few weeks I truly felt worse than I did prior to the transplant and I wondered what I had gotten myself into.  My energy was non-existent, my pain level was almost intolerable and I spent most of my days feeling awful.  

My Mom stayed at our house for a month to continue helping me recover.  I was not allowed to drive for many weeks and was forbidden from lifting, bending or basically doing anything but resting and recovering.  My Mom wore many hats during those weeks, serving as a maid, a cook, a babysitter, a dog sitter, a personal shopper, a chauffer, a pharmacist, a nurse and a friend.  There were so many things I still couldn't do for myself, including simple tasks like getting in and out of bed or knowing when to take my medications.  Having her here was such a blessing and I don't know what we would have done without her help.  I also had many wonderful friends who brought us meals, paid me visits and continued to pray for us.  

I continued to get labs drawn locally every couple of days and I was in constant communication with my transplant team, either by phone or by e-mail.  Though I had limited energy, I wanted to get out and about and enjoy this new life I had been given.  My Mom would take me anywhere I asked but I usually didn't last long before needing to return home to rest for the remainder of the day.  I found this to be very frustrating and I quickly learned that this was going to be my life for the next few months or even years.  Because of my fragile immune system, I had to be extremely careful with germs and I frequently wore a mask out in public.  I hated the stares and whispers but anything was better than getting sick and going back to the hospital!  

I had a few days to settle back into my routine and find my "new normal" before my mother-in-law brought Kyndall home after being in Georgia for a few weeks.  I was SO ready to see her I could hardly stand it!!!  As my luck would have it, a few days before she was to return home to me she was exposed and contacted a nasty and highly contagious form of the flu.  The question was then raised of what to do with her?  Did we continue to stay separated or let her come home but be extremely careful?  They left the decision to me and I decided I wanted her home.  I wore a mask anytime I was close to her and we washed our hands a lot.  I also had my Mom and mother-in-law take her to the pediatrician as soon as she returned.  (I sat in the car, for obvious reasons!)  They gave her some medication and thankfully I was kept healthy and never caught it.

Reunited with my girl after an emotionally and physically exhausting couple of months!!!  

She was so happy to be back in her house with her family and all of her things!  There's nothing like the comforts of HOME.

A few nights later my Mom and I had a very special dinner date with some truly amazing ladies.  Ashlie and Lisa are both liver transplant recipients and they live right here in Jackson.  During my time of waiting, I was introduced to both of them and they served as a great source of encouragement to me as I began my journey towards transplant.  It's been several years since their surgeries but seeing them doing so well gave me such hope for the future, and still does even now.  Because of our experiences we share a bond that nobody else can possibly understand and I am so thankful for that!  These ladies got me through some very dark days, simply with their support and understanding.

Three amazing women representing SIX amazing lives!

My Mom and Ashlie's Mom, both of whom proudly took on the role of caretaker and nurse in our times of need.  

I continued to receive sweet gifts and thoughtful gestures from friends who encouraged me in ways I could never repay them for.  It's amazing how a simple act of kindness can lift your spirits when you're feeling down.

From my sweet Susannah Lewis--Yes, the Susannah Lewis!

I'm pretty sure the Icee company noticed a significant spike in sales during the months of September and October as many of my friends drank Coke Icees in my honor and sent me pictures!  You're welcome, Icee people.  =)

From my friend Cindy--One of my favorite gifts I've ever received

Running into friends while out and about was always a treat!

Kyndall slept with her stuffed liver each night, which often prompted questions about what had happened over the past few weeks.  We continued to be very open with her about my transplant and she seemed satisfied with the answers we gave her.

Even though I was home from the hospital, my daily routine still consisted of checking my blood sugar multiple times each day, receiving shots of insulin, taking handfulls of pills and watching my diet very closely.  I also had to take my blood pressure, my temp and check my weight regularly.  We also wrote EVERYTHING down. Slowly, my Mom began transitioning these tasks over to Matthew and also to me in order to prepare us for her departure.  The hardest part of all of this was managing my diet.  I still didn't have much of an appetite and when I did, it was usually for something super unhealthy.  (If you know me, this is not a shock to you)  Because of the high dose of Prednisone I was on, my body was temporarily diabetic which meant I had to watch my sugar intake and I also was on a strict low sodium diet to keep the swelling under control.  This didn't leave many options for a picky eater like myself!

A little too happy about pricking his sweet wife's finger....

My life in pill form....

Remember how badly I wanted to experience all of the fun fall activities that I was missing out on?  My long awaited wish was granted when my entire family, including both of my parents and my mother-in-law, took me to the pumpkin patch!  I've never been so happy to pick out a pumpkin in my entire life and probably never will be again.  Those seemingly insignificant and silly little traditions are the very things that I learned to appreciate the MOST.  

October 25th, 2015--Five weeks post transplant

They even let me help carve it!

The other simple pleasure that I was missing so badly was going to church with my family.  Even before my surgery I had missed a lot of Sundays because many days I just didn't have the energy to get out of bed.  My first Sunday back was a great day!

October 26th, 2014

Soon it was Halloween and we enjoyed a memorable night with friends, roaming the neighborhoods of Medina, filling our bellies with good food from Rhodes Diner and making memories to last a lifetime.  I doubt anyone around me even noticed, but many times I had to wipe away tears of thankfulness and joy because I was so overcome with emotion.  I know I keep saying it but I was just so incredibly thankful for these little moments.  It was also in these moments when I would begin thinking about my donor and I had to chase away feelings of sadness and guilt.  Was my donor a mom like me, whose children were trick-or-treating without her this year?  Was my donor a child whose family missed out on the joys of choosing the perfect costume?  As time went on these feelings would get stronger and stronger.

Seeing "Rainbow Dash" skip through the neighborhood gathering candy was exactly what my dreams were made of!

On November 5th I returned to Vanderbilt for a follow up with my transplant team.  They were happy with my overall progress but there was still a great deal of concern over the fluid I was retaining in my belly.  It had decreased significantly in the past few weeks but according to updated CT scans and ultrasounds, there were several "pockets" of fluid that were not resolving the way they should.  This continued to cause problems with my ileostomy which was frustrating.  But, overall I got a glowing report from my surgeon and for the first time in over two years my labs were within a normal range!!  What a praise that was!!!  Thank you, LORD!

My bilirubin is one of the most important measures of how well my liver is functioning.  A normal range is anything from 0.2 to 1.2  As you can see, mine was finally within that range, as opposed to the 21 that it was at my time of transplant!  

Kyndall was with us at that appointment so we decided to take a comparison picture on the transplant floor.  This would become a new tradition each time I returned to Vanderbilt!

7 weeks post transplant

Versus 1 week post transplant

At that same appointment I received the all clear from my surgeon to make my first over night trip since the transplant.  Several months prior I had been a part of the planning team in charge of organizing a girls only fall getaway for our Sunday School class.  We were only going to our teacher's house on the Tennessee River, but I still had to get permission.  I was so happy that I didn't have to miss out on this fun weekend and I was even happier that my Mom was still in town and able to go with us!  It was a relaxing weekend full of sweet fellowship and refreshment in God's word.  It was exactly what I needed!

These girls are more than my friends, they're my sisters and I adore them.

My fall was shaping up to be pretty memorable after all.  Things were going well and life was beginning to return to normal.  I began driving again and was able to care for myself more than I had been in the weeks past.  

On November 12th, after spending two months with us, my Mom left to go back to Tallahassee.  She had done her job and she had done it well.  It was time for me to find my own strength and begin moving on with life.  It was hard to see her go, but Kyndall was saddest of all.

Getting in some sweet cuddles with Grammy on their last night together

Saying goodbye to my Mom was hard and I was scared, but it wasn't long before I was able to do more and more things for myself and of course I had plenty of friends to call on if I needed to.  Kyndall was back in preschool and we were settling back into our routine.  Things were going pretty well.  I even managed to set up a photo session for some updated family pictures.  

I was starting to feel pretty good with the exception of the fluid that still remained "loculated" (doctor's words) in my belly.  For some reason there were a few areas that just would not drain on their own, no matter how many rounds of lasix they prescribed.  We knew this because every couple of weeks I would have ultrasounds and CT scans and they would measure the areas of concern and compare them with the last reading.  My team was concerned about an infection developing and since there weren't any notable changes taking place, my surgeon made the decision to have me come in for an outpatient procedure in which an accordion style drain was inserted into my belly and worn for an indefinite amount of time.  I was less upset about having a surgical procedure and more concerned with how I was going to conceal a nasty drain for the next several weeks or months!  

Prepped for surgery.  Haven't we done this before??

The procedure itself wasn't that big of a deal.  It was done in the radiology department where they sedated me to the point I don't remember any of it and then used an ultrasound to locate the pocket of fluid.  Then, a tube was inserted into my belly and stitched into place.  I woke up with this lovely accessory....

Just what every girl wants just before the holidays begin--A tube coming out of your belly and a huge bag of "yuck" hanging from your body.  There was absolutely no way to hide this massive thing. I was annoyed, to say the least.  Even still, I was thankful that they weren't keeping me and I was returning home after just a few hours in recovery.

The next few days were absolutely miserable as I tried to get used to the feeling of having a large, wide tube moving around on the inside of me.  It was very painful, not to mention the awkwardness of trying to conceal the drain itself.  Nobody wants to see that!  I was given pain medicine to help with the discomfort, which helped some.  I had a church function to attend a couple of nights after the drain was put in.  I didn't want to show up sporting my bag of yuck and I didn't want to miss hearing my dear friend Joy Greene speak, so I sort of took matters into my own hands.  I had noticed that the drain was no longer filling up and nothing seemed to be coming out.  So, I decided to just unhook the valves and leave the drain at home for the evening.  I still had a plug coming out of my belly which was attached to the drain inside of me, but outwardly there was nothing hanging from my body.  Sweet freedom! 

So glad I didn't have to miss the opportunity to see my Joy!

My transplant coordinator called me the next day to ask me how the drain was doing and I told her it had stopped.  I considered this good news, believing that meant all the fluid was gone and the job was done and over with.  Unfortunately, she explained that this probably meant the drain had stopped working and told me to get to the hospital as soon as possible and to come prepared to stay.  That was a Friday afternoon and a weekend spent back in the hospital was NOT on my agenda. I was very unhappy, to say the least.  She also explained that my surgeon was on service that weekend and he was the one who requested I come in.  He wanted to be the one to deal with the issue himself.  This made me feel a little better, but I was still not looking forward to more time spent on the 7th floor.

Matthew and I checked into the hospital Friday evening and upon examination it was determined that the drain had in fact stopped working.  The conclusion was that the type of drain they put in was not well suited for the type of fluid inside my body.  I needed a more invasive drain, which could only be placed in the OR by my surgeon.  I would have to be put to sleep completely and I would have a rather large incision made in the lower part of my belly.  The surgery was planned for early Sunday morning so I spent the first part of the weekend just being monitored and hooked up to IV fluids.

This is pretty gross but here's a picture I took looking down at my belly as I sat in my hospital bed.  This is picture of the first drain that remained inside of me until surgery on Sunday morning.  You can see there is still "stuff" that needs to come out but it was too thick for that type of drain to handle.  Sorry for the graphic description but this is the reality of what we were dealing with.

I decided to wear my shirt from Bethany during my hospital stay.  My transplant nurses and doctors loved it.

The surgery took place very early that Sunday morning and before going back into the OR, Dr. Gorden came over to say hello to me as I was being prepped.  He apologized for putting me through another surgery but explained how important it was to get this fluid taken care of as to avoid a possible infection.  He assured me that the anesthesia and the intubation would have no affect on my new liver.  One of my biggest concerns was how this would affect me being able to go home to Florida for Thanksgiving.  It was now less than a week before the big holiday and Thanksgiving was to be my first trip home since prior to being put on the transplant list--almost a year prior.  He told me we would see how things went but as long as there were no complications during surgery then I should be fine to travel.  

Thankfully, everything went according to plan and I woke up several hours later in recovery sporting another new accessory.  This time I had a bulb drain, which is the same kind I had when I woke up from transplant.  These are much easier to disguise, but still pretty painful in my opinion.  

I returned home later that evening and spent the next few days resting up for my first trip home to celebrate Thanksgiving.  I had gotten the green light from my team and we had a plan in place just in case anything crazy was to happen.  

Once again I was reminded of how THANKFUL I am for the little things--Like sharing a Thanksgiving dinner with my precious family, spending time with my cousins and watching our kids run around my Grandparents' yard in Two Egg.  Our family has a tradition before we eat, which is to go around the room and share what we are most thankful for that year.  I could barely even speak as I talked of my thankfulness for my donor and the precious, priceless gift of life that I was given just two months prior.  Once again I couldn't help but be sad on this day as I mourned for my donor's family.  I wondered what they were doing and how they were spending their first big holiday without their loved one.  This thought and these feelings would continue to haunt me each time I celebrated my own life.  With my celebration came feelings of guilt and much sadness.  

I included this picture because it's the only one I have where you can somewhat see my drain.  It's on my left side, hanging just out from under my shirt.  It looks like a clear Downy ball.  All I can say is thank goodness for leggings and loose fitting shirts!  They were my life saver for many weeks as I figured out creative ways to hide this thing.

My cousins, who are more like siblings.  I'm the oldest and the shortest.  Jeffrey is the youngest and the tallest.  Funny how that works!

We also took family Christmas card pictures that weekend....

We celebrated my 32nd birthday (a few days early) which was an exciting but emotional time for me.  I was only able to celebrate another year of life because of two people---Jesus Christ and my donor.  I usually dread seeing another birthday come around but this year I was overwhelmed with gratitude and humility.

Birthday dinner with our family in Georgia

With a little help from her Nonie and her Grammy, Kyndall threw me the best "My Little Pony" themed birthday party there ever was!  She was so proud and I was so happy to be able to witness the pure joy she received from making my birthday special.

The next week I had another appointment with my transplant team at Vanderbilt.  I had a CT scan to see what progress (if any) had been made in the effort to reduce the fluid in my belly.  This day also happened to be my "real" birthday (December 3rd) and I couldn't think of a better place to spend it than with my team.  I had high hopes for getting my drain removed that day but unfortunately Dr. Gorden wasn't impressed with the CT results and therefore decided to leave the drain a little longer.  The good news was that even though not all of the fluid was gone, the drain had reduced it enough that my ileostomy was no longer prolapsing and surgery was no longer lingering in my future!  This was GREAT news to me!  

I got a good report overall and Dr. Gorden was pleased with my progress.  He made a few adjustments to my medications but overall nothing changed.  We spent the rest of my birthday doing fun things in Nashville, beginning with lunch at Rainforest Cafe

Then a trip to Build-A-Bear....

And finally, a visit with Santa

After a day like that I was pretty worn out for the next several days.  I still lacked the energy that I needed to do normal things like spending the day walking around the mall.  I could do it, but I would pay for it for days to come.  

I continued to have periodic CT scans over the next few weeks to check the status of the drain.  Slowly but surely the amount of fluid was reduced and finally, just before going home for Christmas, Dr. Gorden agreed to take the drain out.  After living with it for over a month, I was happy to see it go!  I was left with another scar on my stomach to be added to my ever-growing collection.  With the removal of the drain and the reduction in fluid I was convinced that I had seen the last of the hospital for a while!

We celebrated the Christmas holiday back home with family, rang in a glorious new year and looked forward to what 2015 had in store for our family.  Surely, it had to be better than 2014!!

I was overcome with emotion when I opened this Christmas gift from my sister and brother-in-law.  As with every holiday I couldn't keep my mind and heart off my donor's family.  Again, feelings of guilt and sadness accompanied feelings of thankfulness and joy.  It was a strange tangle of emotions and I didn't know if it was normal or if I was experiencing something unhealthy.

2015 brought some very unexpected surprises and I was quickly reminded that transplant life is an ongoing battle.  With a disease like PSC, I will never stop fighting the battle against my own immune system.  For the rest of my life there will be a delicate balance between lowering my immune system to the point it's no longer attacking good things while at the same time making sure I have the defenses needed to keep my body strong against viruses and germs.  It's a battle that cannot be won, only fought hard.

We were blessed to be invited on a marriage retreat to Gatlinburg in early January and Matthew and I had a much needed time of refreshment in the Lord where our marriage was strengthened and renewed in ways we didn't even realize we needed.  After only 7 years of marriage, we have walked through more than many couples do in a lifetime.  I wouldn't change this for anything in the world because it has forced us to rely on one another and on the Lord when we didn't know what else to do.  I have seen a tender, selfless side of Matthew that I may never have known had it not been for the sweet times of pure dependence on him that I experienced in some of my darkest days.  He has seen me at my worst, yet loved me best.  He has stepped up and taken on roles that I could not fulfill and never complained.  He tells me over and over again what joy it brings him to serve me in my times of need.  He truly has the heart of a caregiver and I know that God gave him to me because He knew I would need him in this way.

After we returned I decided I was ready to contact my donor's family.  Who am I kidding?  I was ready as soon as I woke up from my transplant!  I couldn't wait to find out who this person was, where they were from and what their life was like.  As morbid as it sounds, I also wanted to know what happened to them.  I cannot describe what a strange feeling it is to not know any of this information.  I have a part of them inside of me, keeping me alive and allowing me to enjoy a healthy life.  Yet, I don't even know how old this gift is or who its original owner was.  I realized the only way I would ever find out would be to write them.  I was prepared for rejection, as the family does not even have to accept the letter, much less respond to it.  Though my letter was brief, I spent many hours praying over the words I put into it and hoping the family would truly see heart of gratitude and feel my deep compassion for their loss.  I wanted them to know that not a single day goes by that I don't think of their loved one.  Mostly, I wanted to thank them for making the important decision to donate their loved one's organs.  During a time of unimaginable grief, they made the selfless decision to give me and several others the gift of LIFE.  I was dying and they saved me.  I turned the letter over to my transplant social worker, who then reviewed it and passed it on to the family.  I haven't heard back from them but I plan to write again on the one year anniversary, just to let them know I'm thinking of them and still grieving for their loss.  If they should choose to contact me, they will write a letter just as I did, and submit it to the social worker.  At this point, the ball is in their court and I have no way of knowing any details without them contacting the social worker.  This is frustrating and emotionally overwhelming to me, but at some point I will have to make peace with the fact that I just may never know.  I may never get the closure I need and that will simply have to be ok.  

Turning in my letter felt like turning in a piece of my soul.  That tiny envelope contained more emotion that you can even imagine.  My heart in the form of written words.  I found a bench in a quiet hallway of the hospital and said a silent prayer over it before passing it off to the social worker.  

On the same day that I turned in my letter, I also went down to medical records and requested copies of my operative notes.  Yes, I'm a nerd and I wanted to read exactly what took place in that operating room in the wee hours of September 16th.  I was also secretly hoping there might be some clues in the notes as to my donor's gender, age, location, cause of death, etc.  The nice lady in medical records said she would print me off 100 pages for free but that my file was well beyond 100 pages.  I told her that I only wanted notes that pertained to my transplant, nothing prior.  She handed them over to me with a smile and I felt as though I had some kind of treasure in my hands.  I just knew I was about to unlock the mystery of my donor.  Wrong.  There was an entire page detailing the procurement process, but not one single mention of any specifics.  As I continued reading on into the notes from my own surgery, I found myself getting very emotional as I took in the details of that day.  Although most of it sounded like a foreign language to me as the two surgeons described "clamping this" and "cutting that", I realized I was reading notes on a miracle.  These notes detailed the beginning of my new life.  They told the story of my second chance.  With tears in my eyes I read the first sentence which said.....

"This 31 year old  woman has end-stage liver disease and cirrhosis due to primary sclerosing cholangitis.  She has decompensated liver function with a very high MELD score.  An appropriate size, matched blood group, matched donor liver has been identified for her and liver transplant is proceeding."

The notes went on to describe how my old "native" liver was enlarged, stiff and congested in appearance.  My liver was removed and sent directly to pathology.  The donor liver was waiting nearby in a bucket of "ice cold slush".  Then I read the most interesting part of all---The part of the surgery where I had no liver in my body!  It's called an anhepatic state and it is the period of time between the removal of the native liver and the transplantation of the donor liver.  I sat in awe and sheer amazement as I read how these two surgeons kept me alive until my new liver was hooked up and ready to do its job.

Then, the best part.  Dr. Gorden begins to describe how beautiful and healthy and perfect the donor liver was and tells of how the surgeons stood by and watched as the donor liver "pinked up" and began perfusing as my own blood began flowing through the newly connected arteries.  Each time I think of this scene, I get teary at what a beautiful sight that must have been.  Their job was done and their patient was now on her way to a healthy life.  What an amazing feeling that must be to know you had a part in something so magnificent.  God has truly gifted these surgeons and I am so thankful that they have chosen to use their gifts for the greater good.  

I was disappointed that I didn't find out any information on my donor, but it was definitely eye opening to read through all of my notes.  There was so much that I didn't remember in the weeks following my surgery and the notes brought all of those memories back like a flood.  I think it was somewhat theraputic for me to read the details.  It gave me a new appreciation for how far I had come and as always, reminded me of what a precious gift I had been given.

After a few months of no major issues, I started feeling pretty lousy.  It was now the end of January and even during the trip to Gatlinburg I struggled to maintain my energy and keep up with the group.  I tried not to let it show but I definitely wasn't feeling my greatest.  A few days after we returned home from our retreat I found myself bound to the bed, feeling like I had caught a horrible case of the flu.  My body hurt all over, I was dehydrated and weak and I began running a fever.  I called my team and they told me to get a flu swab.  I did this and it came back negative.  I began taking the flu medication prescribed just in case the test was a false negative, but my symptoms just continued to get worse.  Finally after a day or two my team told me to go straight to the ER at Vanderbilt.  All I could think was "here we go again...."

I will never forget the feeling of sheer panic I felt when I walked into the crowded waiting room of Vandy's ER during the peak of flu season.  There were sick people EVERYWHERE, kids throwing up in bags, people coughing and hacking and sneezing while other yelled out in pain.  I was less than 4 months post transplant and I was walking into a cesspool of germs.  I was provided a sterile mask and I gladly wore it.  Matthew and I waited for hours and hours before I was ever taken back to a room.  Once an IV was started I passed out, while he enjoyed the sights, sounds and excitement of the ER.  He even watched and listened as a young girl who overdosed on drugs was brought back to life in the room next door.  It was a zoo, to say the least and it was over 24 hours before I was finally transferred up to my cozy and familiar "home" on the transplant floor.

Upon my arrival on the transplant floor, I was told that although the flu test came back as negative, they weren't taking any chances and everyone who entered the room would be wearing protection including masks, paper gowns and of course gloves.  It was the first time I ever remember someone else being protected from me, rather than me being protected from everyone else!  Vanderbilt is smart and they want to keep the spread of germs to a minimum, thus the over-kill when it comes to keeping things sterile.  Every nurse, resident, doctor and visitor had to take precautions when they entered my room.  There was a large sign on my door warning and reminding those who entered that I was possibly contagious.  The food service ladies wouldn't even come into my room, rather left my tray outside my door....which is where it stayed since I was no longer eating.

Initial labs showed that my kidney functions were elevated, among other things.  This was a big concern to the doctors and also to me.  I had never had any issues with my kidneys and I wasn't ready to start now!  The labs also showed a very high level of anti-rejection medications in my system.  Because I had been through a rejection episode, my doctors had been giving me higher than usual doses to keep the rejection under control.  Suddenly, my levels of medication were so high that they labeled me "tacro toxic" which means the level of tacro (an anti-rejection med) was so high that it was becoming toxic to my system.  Most likely, this was the reason for the kidney functions being elevated.  Tacro is extremely hard on the kidneys, but unfortunately it's a necessary part of the post-transplant life.  I had a few other standard tests done like an ultrasound of my liver, a chest x-ray and a urinalysis.  They pumped me full of fluids non-stop which is probably to thank for the fact that I began feeling a little better after the first day.

They made me wear a mask anytime I left my room in order to keep from contaminating unsuspecting bystanders!

I had a very sweet visit from two precious friends of mine while I was in the hospital.  These two friends are the aunt and mother of my friend Aimee who unexpectedly lost her battle with Crohn's and PSC in early 2014.  I knew Aimee from my support group, Girls with Guts and was very saddened and discouraged by her death.  I have kept in touch with her mom and her aunt and they were very sweet to come visit me during this particular hospital stay.  They also brought me a special gift, which I then displayed in my hospital room for the rest of my time there.  It now hangs in my bathroom at home where I can see it each day.  I love this simple reminder....

Sweet delivery from friends back home in Tallahassee

Over the next few days I began to realize that things were pretty serious and nobody really knew for sure what was going on inside of my body.  My kidney functions continued to worsen, despite them holding my anti rejection medications.  My transplant team consulted with my GI doctor and also an infectious disease doctor.  The possibility of a Crohn's flare and also the possibility of CMV were thrown around as two possibilities for my illness.  More testing, more fluids, more medication and more time spent in the hospital.  

Back in September while I was still living in Nashville and recovering from my transplant, my friends Joy Greene and Angela Snider told me about an exciting evening they were planning for January and invited me and my entire family to be their special guests for the event.  It was their way of cheering me up and giving me something to look forward to.  I was honored and excited and began anxiously awaiting January 29th, which was to be the night it all took place.  Mike Weaver of Big Daddy Weave was set to perform a live concert, followed by a time of teaching and encouragement from Joy herself.  It was a sit down dinner, with proceeds from ticket sales going to a great cause.  My family was treated to 8 tickets and we began making plans to attend this special event.  

By the time January 28th rolled around, it didn't look like I had much hope for getting out of the hospital in time to join my family for the event.  My in-laws, sister and my parents were already in town and I told them to please go without me.  Just because I couldn't go didn't mean they had to miss out on this special night.  Once again I was angry and bitter and felt cheated.  Why did I have to miss out on something I had been looking forward to for four months??  It just seemed cruel and unfair.  I sat in my hospital room feeling sorry for myself that night as I watched friends post pictures and videos on Facebook from the event.  It was definitely a low point for me.

However, I happen to have the sweetest friends that any girl could ask for and just as I was beginning to sulk I got a text from Angela with this video attached.....

Click Here

If I couldn't be at the barn to hear Mike Weaver sing, the next best thing was definitely getting a personal video from him!  Suddenly I wasn't feeling so sorry for myself but instead feeling very loved and very thankful for the wonderful friends who God put in my life!  I also got a surprise visit from Joy herself as she was passing back through Nashville to catch her flight home to North Carolina!  She had been in cahoots with Matthew and she arranged a short but sweet visit with me.  It meant the world to me.  Just as in September, she continued to check in with me every single day of my hospital stay.  Knowing I was going to hear from her each day gave me something to look forward to as the days dragged on.

 My Mom posted this on January 29th.....

"Update on Ashleigh-Anne.....kidney tests continue to slowly come down but fever was 102 last night. There is some pressure and tightness in her abdomen and CT shows some fluid pockets. They cannot access the pockets without opening her up and they do not want to do that. They are giving her high doses of antibiotics in case there is any infection in the fluid. They are doing a CT with barium to check for a possible crohn's flare up and may do a scope too. She is being seen by lots of teams of Dr's at this time to determine the source of her fever and abdominal pressure. Pray for Matthew because he has been there all week and none of us can relieve him because they don't want germs brought back to the house here in Jackson. Kelly, David and I have not been able to go to Nashville to see her but James and Jody stopped by on their way up."

On January 31st I posted this update myself....

"My doctors just delivered the news that I will be here until at least the middle of the week. They still aren't exactly sure what's going on but the infectious disease team is leaning heavily towards CMV. It's not uncommon in transplant patients due to our compromised immune systems. There are still many more tests to be done but for now this is what we know. Thanks for all of the texts, calls, messages, visits and prayers. They are sustaining me and I am so grateful!"

Later that afternoon I finally got a visit from Kyndall and my parents.  Having her crawl up in the bed next to me and share a rice crispy treat was the best medicine for my heavy heart! (By this time they had completely ruled out the flu so there was no restrictions due to germs, thank goodness!)  I spent some quality time with her before my parents took her back to Florida with them for an indefinite amount of time.

As I began feeling better and better, I also began to get BORED.  There were several days when I wasn't even hooked up to anything so I had free range of the whole hospital and blessings from my nurses to go where I pleased.  So, off I went.....

Usually I would just walk around the transplant floor but occasionally I ventured downstairs into the clinic.  I still wasn't eating so the cafeteria didn't entice me but I would sometimes accompany Matthew down there as he got a sudden craving for ice cream or a slice of pizza late at night.  I loved seeing the familiar faces of my favorite nurses and doctors.  I realized that the transplant floor is actually not an entirely awful place to be, as long as you're not feeling entirely awful!

I posted this update on February 1st.....

"Day 6 update--My labs are looking better in general but they also show that my kidneys are angry at me again. Until yesterday I had been on constant IV fluids due to severe dehydration. My kidney functions had improved so much that they took me off the fluids--yay! However, it seems I simply cannot be trusted to eat and drink as I should so we are back on fluids again. Boo! I have three teams following my case--hepatology, infectious disease and my surgical transplant team. They all seem to still believe this is a case of CMV. There are a few other possibilities such as a crohn's flare for which I will be scoped sometime tomorrow. (I get propofol which y'all know I love for some reason so there's something to look forward to!) Another possibility is a pocket of fluid in my abdomen which is residual from my transplant. It's been there and we've know about it for months but there's a chance it could have become infected. To find out would require a needle biopsy done by a radiology team. I've had this before and it's really not as awful as it sounds. For now they are slamming me with IV antibiotics to hopefully cover all of these things. Something is definitely working because I'm feeling better, my high fevers are gone and my white blood cell count is normalizing. Unfortunately they still cannot get my anti rejection medications dosed just right. I came in labeled as "tacro toxic" with a level of 48. The ideal level for my body is around 6. They completely held the anti rejection meds for several days in order for my body to recover from the toxicity. Yesterday they reintroduced those meds and today my level is at 10. So it's creeping back up and they are holding it once again. Being four months post-op I really shouldn't be having these weird shifts. So that is also of concern to them. So many questions but few answers makes for frustrated doctors and weary patients! BUT....I'm confident that they can and will figure me out. Besides, it could be so much worse. I try to walk around the unit a few times a day just for a change of scenery and to get my strength back. This also serves as a great reality check for me as I see other patients in much worse condition than I am. This perspective keeps my whining to a minimum which I'm sure everyone appreciates! I have to take a minute to brag on my husband who hasn't left my side since last Monday. He has slept on a glorified chair for almost a week straight and hasn't complained even once. He has offered to drive anywhere in Nashville just to find something that I will eat. He has pushed my IV pole all over this hospital just so I could get out for a bit, helped me to the bathroom 847 times each night, meticulously measured and recorded bodily fluids, made midnight ice cream runs when the craving hit me, fetched ice chips and sweet tea on demand and most importantly he has prayed over my tired and broken body every single night before I fell asleep. Neither of us had any idea we would walk through something like a chronic illness together, but God did. He knew. He also knew I would need someone like Matthew who has a caretaker's heart. He has at times literally carried me through when I couldn't do anything for myself. He is such a gift to me and I hope I never take for granted the way that he loves me so. To show him my deepest thanks I shall attempt to watch the Super Bowl tonight."

I had an endoscopy done and on February 5th I posted this update....

"Day 10 Update--The doctors confirmed this morning that I do in fact have a case of CMV. I am so happy to finally have a diagnosis, and one that's not too serious! This is very common post transplant and I will continue to be treated with anti viral medications. However, they are still concerned about a small pocket of fluid under my ribs. My CT scan showed the possibility of infection but unfortunately this area is not easily accessible and would require major surgery in order to remove the fluid. So instead I will continue IV antibiotics for another four weeks via a picc line at home. My kidneys are slowly bouncing back but my levels remain far beyond the normal range so because of this there is no word on when I will be released. I am on 24/7 fluids still as my kidneys recover from the severe dehydration that they endured. Maybe if I had come in sooner it wouldn't have been this serious but I am stubborn and like to do things in my own time. Lesson learned! I am so so grateful to my precious and selfless friend Stephanie Newmon who has faithfully been taking care of our puppies and checking on our house while we are gone. This is not the first time she's done this for us and it may not be the last. I don't know what we would do without her! Thanks to everyone for all of the calls, messages and visits. I have had so many sweet visitors and that has done wonders for my spirits. Ten days locked up from the outside world makes for some long and lonely days. Hopefully my next post will be to tell you I'm headed home to Jackson!"

CMV stands for cytomegalovirus and it is very common post transplant.  It's in the same family with shingles and chicken pox and it likes to creep in when your immune system is highly compromised, which was exactly the case in my situation.  It's not life threatening but requires some heavy doses of anti viral medications to combat it.  In the meantime, it just makes you feel really lousy and there isn't a whole lot they can do about that.  

Once my doctors started throwing around the term "picc line" I immediately turned into a huge ball of nerves.  I didn't know when or how this was going to happen but I knew I was dreading it!  I had somehow avoided ever having one, despite all of my hospital stays and the thought of a permanent needle in my arm made me nearly pass out.  To say I was dreading it was a huge understatement!  Each time someone came into my room I nearly jumped out of my skin, fearing it was a transporter coming to take me for the picc line placement.  The day came and went and soon it was evening.  I figured by this point I was off the hook until at least the next morning.  I drifted off to sleep, but not for long. 

That night around midnight a nurse came bursting into my room and ordered me to get ready, that they would soon be taking me down to have the picc line placed.  All I could think was "NOW?!"  As it turns out, they do these things 24/7 and it was now my turn.  

I can't say it was the worst thing I've ever had done but it definitely wasn't the best either.  I think it was the thought of the procedure more than the procedure itself that got to me.  I was draped and covered with sterile coverings and only the upper part of my right arm was exposed.  They used a highly specialized ultrasound machine to locate the brachial artery, which extends from my heart down into my arm.  The goal of the picc line is to have a direct line straight to the heart and this is the fastest and most direct way.  As it turns out, I have TWO brachial arteries in my right arm, which was an interesting little fact that I would have otherwise never known.  They told me this is fairly uncommon.  They numbed my arm and then guided a long wire through the artery all the way to my heart.  All the while they were closely watching the location of the wire on the ultrasound machine.  Once it was exactly where they wanted it, they removed the wire and left the tubing, much like an IV only much, much longer.  My arm was wrapped and covered and I was given strict instructions on how to care for this new little gadget.  I was told over and over again how very important it was to keep all tubing sterile and clean because this was a direct line to my heart and even the slightest amount of germ exposure could be fatal.  YIKES.

This isn't my picc line, but this is exactly what mine looked like.....

As I would soon realize, this new little contraption would be both my best friend and my worst enemy.  I was strictly forbidden from getting it wet, which made showering nearly impossible.  I also had to have the bandage changed once a week by a home health nurse which was not much fun.  However, this little gadget also saved me the excruciating pain from blood draws, IVs or any other type of procedure involving a needle.  Medication could be given through the picc line and blood could be drawn out of it.  Now THAT was convenient!!

My doctors were constantly on my case about my food and liquid intake, but I assured them I simply had no appetite.  Nothing, not even my favorite junk foods, sounded appealing to me.  I dropped down to just over 100 pounds and that's when they sent in a transplant dietician who prescribed an a medication to stimulate my appetite.

The next morning I had my first craving and ate my first real "meal" in over a week.  My choice was not a healthy one, but everyone was just glad to see my appetite returning.  My sweet husband made a run for chocolate glazed donuts and a fountain cherry coke that morning before heading back to Jackson to work.  Bless him!

Unfortunately after just a day of taking this appetite medication, I began to have some weird side effects.  My hands started swelling, I was short of breath and it made me EXTREMELY sleepy.  I couldn't stay awake for more than 15 minutes without dozing off.  All of this was very frustrating to me so I requested to stop the medication and they did.

My friend Betsy from back home in Tallahassee wanted to do something to surprise me and cheer me up so she arranged a little Valentine's Day themed photo shoot while my Mom had Kyndall in town.  My friend Laura also helped pull off this surprise and the result was just what I needed to put a smile on my face!  I couldn't stop smiling when I saw it!  Nothing made me happier than seeing her so happy!

Before I knew it February 8th rolled around, which was Matthew's birthday.  This day was a serious low point for me.  I felt so guilty that Matthew was spending his birthday sitting in a hospital room with me.  More than just that specific day, I began feeling guilty that he was spending his life in a hospital room with me.  I cried and told him how sorry I was that he was stuck with me.  I told him I wouldn't blame him if he got tired of this life and decided he would be happier without me.  As always, he told me that was an absolutely ridiculous thing to say and reminded me of how much he loved me and how he enjoyed serving me in this way.  I heard what he was saying, but it didn't take away the feelings of guilt and shame. Not only was he spending his birthday in the hospital, but he had spent the past two weeks driving back and forth from Jackson to Nashville every single day.  His motto has always been that "nobody should ever spend the night alone in the hospital" and he has stuck to that.  He was sleeping each night on a fold out chair, then getting up before 5:00 a.m. and driving two hours home to Jackson and working 12 hours, then driving two hours back to Nashville just in time to kiss me goodnight and pray with me before we both went to sleep.  He did this faithfully for two weeks.  Matthew is my definition of an unsung hero.

I had several visits from sweet friends during those two weeks, including my friend and fellow transplant patient Jay, Dr. Jett from Englewood, my BFF Julie and even two people whom I didn't even know but who knew of me!  One of them even heard of my love for Icees and showed up with one in hand!  Both of these new friends had heard my story from mutual friends and just wanted to show their support.  I was so touched by the kindness of sheer strangers and humbled by their sincere concern for me, simply because I was a friend of a friend.  

I love my Jules!  She tried her hardest to bust me out of that place!

I also received this picture from my Wednesday night Bible study class and it made me both smile and cry.  I love these ladies so much and I longed to be back with them.  They had been faithfully praying me through and sending me messages of encouragement each and every day.  They took this group picture to remind me that they missed me.

Finally, on February 10th, after more than two weeks in the hospital being treated for a CMV infection, I was going HOME!  I had to take my picc line along with me and I had strict daily instructions to follow regarding administering my IV medications but anything was better than spending another day there.  

Matthew and I returned home to find this sweet and thoughtful surprise from my friend Stephanie who had been faithfully taking care of our two fur babies while we were away.  Obviously I had not done a single thing to celebrate Matthew's birthday so thanks to Stephanie's thoughtfulness, at least he got a cake and some ice cream a few days after the fact!

I spent the next couple of weeks doing a lot of resting and recovering.  If you've ever had CMV, you can testify to the fact that it completely wipes you out in every way imaginable.  I almost felt like I was starting over with my recovery at times.  I also had to get used to my new routine of administering IV medications through my picc line.  It was difficult to manage on my own because I could only use one hand.  I had to beg Kyndall for help a few times!  

I am a firm believer that in due time, God works everything out in the favor of those who faithfully place their trust in Him.  Remember how bummed I was to miss the Mike Weaver concert that I was to be a special guest at a few weeks prior?  I received a call from Joy saying that Mike was going to be in Memphis and there were two VIP tickets being sent my way for me and Matthew to enjoy a night to ourselves.  Not only did we have VIP access to Mike and the other artists, but when I introduced myself he actually remembered my story and remembered making the video for me just a few weeks prior!  That totally made up for my disappointment!  

Date night to Memphis with Matthew and my picc line!  I actually  had to give myself an infusion in the car on the way out of town!

We bumped into my friend Angela at the concert

Meet and greet with Mike Weaver of Big Daddy Weave!

I returned to Vanderbilt on February 24th to meet with my infectious disease doctor and have my CMV levels evaluated.  At that point they felt that my levels virtually undectable and decided that the IV meds had done their job and therefore the picc line could come out!!  I didn't watch as she pulled it out, but I did ask if I could take this picture once she laid it on the counter to measure it.  

The next few months were pretty uneventful.  I was still very fatigued most of the time but overall I was feeling really good!  So good, in fact, that we finally began planning our long awaited Disney trip, which we had been promising Kyndall since before I was put on the transplant list in early 2014.  With the help of a travel agent/Disney expert, we officially booked our first family trip for the end of November.  I still felt that I needed some time to recover and make sure I was completely energized and healthy enough to make it extra special for Kyndall.

April is National Donate Life Month and in honor of that, one of the local health magazines dedicated their March issue to all things donation related.  I was asked to share my story and it was featured in the magazine which was distributed throughout Jackson.  This was a huge honor and I was so happy to be able to help spread awareness about the importance of donation.  

We had our first major snow of the year in early March and I was able to run and play and build snowmen and make snow angels and throw snowballs and eat snow cream with my family.  Again, it was the little things that meant the most to me.  I treasured these precious moments more than ever.

"Grace" and I had our SIX MONTH check up with my liver doctor and we both received a glowing report!  Things were going really well and I could hardly believe we were already at the six month mark.

Kyndall joined me for my six month visit and took this picture just after I received the good news!

My little sidekick who takes such good care of me

Six month comparison picture of my scar

We celebrated St. Patrick's Day on March 17th and that was the exact day that I remember feeling things change in my body.

Just a few days prior my liver doctor had released me to begin getting lab work done just once a month rather than every other week.  I decided after dropping Kyndall off at school that I would make an executive decision and go ahead and get my typical bi-weekly labs drawn rather than waiting.  Something just felt "off" and I didn't want to take any chances.  I e-mailed my team to let them know what I was doing and why.  I explained that I had began feeling very itchy and that my eyes seemed to be getting more and more yellow by the day.  Those were really my only two symptoms at that point but I knew my body well enough to know that those were very significant signs that something wasn't right.  I had labs drawn on Tuesday and by the end of the week my results were in and I received a call from my transplant coordinator telling me to get to Vanderbilt ASAP.

We had no plans for Kyndall since this was so unexpected so she tagged along with us until my parents could make it from Tallahassee to Nashville later that night.  I checked into the transplant floor on the evening of Friday March 20th and little did I know, that would once again become my temporary home for several weeks to come.

This would be my FIFTH readmission in the short SIX months since transplant.  I was weary, discouraged and feeling like the rest of my life was going to be spent in and out of the hospital.

My parents arrived late that night and took Kyndall back south with them.  Matthew stayed with me, never leaving my side as usual.  Over the next few days my transplant team worked quickly to run tests in order to determine if this was a blockage in my liver (which could be fixed with a drain) or if I was experiencing another rejection.  It was several days before we had a clear answer but they determined that I was in fact experiencing yet another rejection episode.  It was "significant" in their words, and they began aggressively fighting back right away.  Once they determined I was in a state of rejection, the question was then raised whether or not this was an acute rejection or a chronic rejection.  Acute rejections could be treated, where as chronic rejection would mean facing the possibility of undergoing another liver transplant.  Being just six months out from the most traumatic thing that has ever happened to me, you can probably imagine how the thoughts of doing this all over again made me feel!  

Other than being very itchy and yellow, I really didn't have any other symptoms.  In fact, I felt pretty good and most of the time and it was hard for them to even keep me contained to my room on the transplant floor.  I would receive one very large dose of steroids (500 mg of prednisone) via my IV each morning and then I was completely unhooked for the rest of the day and night.  This gave me the freedom to roam the hospital, which I did quite often!  I didn't feel sick at all and I was thankful that despite the nasty battle that was taking place inside of my body, I felt pretty good.

Obligatory traditional picture

I was amazed at how quickly my eyes began to turn yellow.  My bilirubin had creeped up to 15 by this point and that was evidenced not only in my eyes, but also my skin.  For reference, a normal bilirubin level should be under 1.  In the past, mine had gotten as high as 22 and it seemed to be quickly heading in that direction again.

It wasn't long before word got around that I was in the hospital yet again and several times a day I received sweet deliveries from precious, faithful friends who wanted to let me know they were thinking of me and praying for me.    

Before I knew it my room had transformed into a gift shop, full of fresh flowers, thoughtful gifts, yummy treats and colorful balloons.  It became a joke amongst the doctors and nurses and often they would sneak into my room and rummage through my baskets of treats for a late night snack to keep them awake!  I was happy to share and gladly spread the love with all those who were taking such good care of me.  You could smell the fresh flowers that adorned my room from all the way down the hall and I even had one nurse who said she followed her nose all the way to my door because she smelled fresh lilies and wanted to see where they were coming from.  I can honestly say my room was by far the most happy and cheerful room on the entire transplant floor.  I have never felt so loved as I did when I looked around and saw all of the cards and gifts and acts of kindness that had been showered upon me in my time of need.  I even laughed and told Matthew that all my friends must have really thought it was the end for me this time because in all of my time spent in the hospital, I had never received this many deliveries, calls, texts or visitors!

Meanwhile, Kyndall was being well taken care of by her Grandparents ten hours away

I was thankful to be able to Skype and Facetime with her pretty much every night.  If I couldn't have her there with me, this was the next best thing.  Technology saved me in times like these!

My faithful, devoted, selfless, loving husband spent every single night at my bedside just as he had done so many times before.  Since I was actually feeling pretty good this time we were able to spend some time together walking the halls, talking and just enjoying each other's company.  It's pretty pathetic that it takes something as drastic as a hospitalization to give us this type of quality time but such is life.  

Each day we would walk over to the food court in the Children's Hospital at Vanderbilt to get lunch and enjoy a change of scenery

Many times at night we would go downstairs for a late night ice cream treat and then go find a quiet place in the lobby of the hospital to eat it.  It was almost like a date!  Almost.  Except we were stuck in a hospital.  And I had an IV coming out of my hand and was wearing pajama pants.  But it was close enough!

I discovered that at some point since my previous hospitalization they had finally installed an Icee machine in the cafeteria!  I treated myself to at least one of these each day, which gave me another good excuse to leave my room.  Most of the time my nurses couldn't even find me because I rarely stayed put in my bed.  I even got so good at carrying things back that I'd often take orders from the transplant nurses and grab them snacks and drinks while I was out wandering the hospital.  I may have been fighting for my life, but I certainly didn't feel like it!  I'm thankful for that!

I also indulged daily in a new found addiction which I had never craved before.  There were tiny refrigerators strategically placed all around the transplant floor, stocked with the best ice cold chocolate milk I had ever tasted and I certainly satisfied my sweet tooth several times a day with these little babies!  They say certain tastes, smells, and sounds can bring back familiar memories which can be both good or bad.  This has proven to be true for me as I haven't so much as touched chocolate milk since this hospital stay!  I think my subconscious must automatically associate it with bad juju!  Ha!

It was determined that I would need a liver biopsy in order to differentiate between an acute rejection and a chronic rejection.  So, on March 25th (Day 5 in the hospital), I underwent an ultrasound guided needle biopsy.  I had done this several times before, even a few times leading up to my transplant.  However, this particular procedure never gets any easier and always causes me a lot of anxiety.  They put me completely to sleep this time which was a welcomed relief and a radiologist performed the biopsy.  As usual, I was very sore afterwards and I spent the rest of that day sleeping off the anesthesia.

The results of that biopsy were given to us later that evening and we were extremely relieved to find out it was an acute rejection rather than chronic.  I could nearly feel the anxiety and stress leaving my body as we received this happy news.  I was still in a serious state of rejection but at least it was treatable and we could continue to fight it with medications.  Thank you LORD.

My team felt it was best to keep me in the hospital for a while as they continued treating me for the rejection.  If my lab work didn't show improvement in a few days, they would repeat the liver biopsy to determine their next course of action.  In the meantime I was now going on a week in the hospital and I was growing very anxious that I might be kept there through Easter, which was quickly approaching.  Each morning when the doctors did rounds my first question was always "do you think I will be home for Easter??"  They would never give me a definite answer and told me to prepare for the worst and not to get my hopes up.

I was beginning to get very discouraged, bored and frustrated.  I found myself throwing a little pity party in room 7655 and I began sinking into a pit of self loathing.  Then, God intervened just as He always does and this happened....

March 26, 2015

"As much as I hate being here, I also love it. Here's why....

Matthew and I have gotten to know my "neighbor" in the room next door and her family.  She is VERY sick with a MELD score of 38.  (For reference, the highest mine ever reached was the low 30's and I was at 27 when transplanted)  She was approved by the board last night for transplant clearance and then insurance gave their blessings.  They just got word a few minutes ago that she's #1 on the list!  Even when I think things couldn't get any worse, I am always reminded that they definitely could.  I have sat crying as I relived some of those same memories and emotions that her family is now experiencing.  It's indescribable.  I am so thankful to be back in the hospital, specifically in room 55 so that my path could cross with this sweet family.  My prayer is to show them HOPE and comfort and tell them exactly where it comes from.  Please pray for this sweet sister and her family.  They are desperate for a miracle.  It could be today or it could be another year before it comes.  Only one person knows for sure.  Help them to rest in HIS peace as they wait, Lord."

I didn't know it at the time but this was the beginning of a beautiful, God ordained friendship with a new sister who I affectionately began referring to as "Hope" when speaking of her on social media.  I didn't want to reveal her identity but wanted to petition all of my faithful prayers warriors to begin praying for her.  When asked what her name was, I simply said "let's call her Hope" and so began the story of my new relationship with "Hope".

A few days later I posted this....

Please keep praying for my neighbor "Hope" here on the transplant floor.  She is declining by the day.  I'm not sure she will even live long enough to receive her gift, despite being #1 on the list.  My heart hurts for her and for her family as they sit helplessly waiting.  Please lift her up rather than me right now.  Her needs are much greater than mine and she needs your prayers more than I do."

Kyndall continued to have fun in Tallahassee and my Mom and Mother-in-Law were very thoughtful to send me pictures several times a day so that I could see what she was up to....

Meanwhile I continued being a social butterfly on the transplant floor, never sitting still for long and having fun entertaining TONS of visitors!  I had over 13 visitors in one weekend which was by far the most I had ever had.  I think people truly believed I was going to die!  Ha!  At one point I had not one, not two but THREE chaplains in my room all at the same time and it was completely coincidental!  No complaints from me, as I wanted and needed all of the prayers and well wishes I could possibly get.  Having all of these visitors was so uplifting to me and it definitely took my mind off my circumstances and brightened my days.  I even had three visitors who came all the way from my hometown of Tallahassee!  It was a constant party in room 55!

In between visitors I would find myself wandering over to "Hope's" room to check on her and to spend time talking with her family members who never left her side.  I got word on March 28th that a liver had come available for her and I couldn't even sleep that night because I was afraid they would take her down for surgery in the middle of the night and I would miss my opportunity to say goodbye to her.  Every time a nurse came into my room that night I would ask them if she was still there.  Even though they probably weren't supposed to, they kept me updated and told me she had not gone down to the OR yet.  As soon as the sun came up I was anxiously pacing the halls outside of her room waiting for them to take her down at any minute.  I was so blessed to be standing there when they came to get her and I was able to hug her, pray for her and tell her that I loved her.  I stood with her family and watched as they took her away to receive her new gift of life!  It was so emotionally overwhelming for me as a whole host of emotions and memories came flooding back.  

I posted this update the morning of March 29th....

"Hope" was just taken down for her liver transplant!! I was able to spend a lot of time with her and her family this morning which was such a blessing to me. I showed her my scar, "Grace", let her ask questions and just got to know her really well. She asked me over and over again how soon after surgery I felt better. Sweet sister is so weary and desperate for relief. Brought back such tender memories for me. It was healing for me to relive those emotions and be humbled back to that awful place where I was myself just six months ago. I told her I had prayers all over going up on her behalf and she was so grateful for that. Please please keep those prayers coming. Hope will need them simply to survive this surgery and the recovery that's ahead of her. She is so very sick. I plan to go down in a little while and sit with her family and I will keep you updated!"

In the meantime it was decided that since my labs were not showing signs of great improvement, I would need a second liver biopsy. It was done on the morning of March 30th but this time I was not put under general anesthesia, but rather had to be awake for the entire procedure.  They needed me to be able to hold my breath and therefore I had to be awake in order to receive instructions and alert enough to do what they asked me to do throughout the procedure.  It's one thing to have a needle shot between your ribs when you're ASLEEP but an entirely different thing to have it done when you're wide AWAKE.  When I got down to the procedure room I was incredibly relieved to find out that my very own liver doctor, Dr. Scanga, would be doing the procedure.  This didn't change things as far as what would be done, but it did ease my nerves a bit just knowing I would have a familiar face there with me as well as someone who I knew was gentle and kind to me.  There's just something about familiarity that brings me peace.  

The biopsy was done and I lived to tell about it.  It wasn't necessarily painful, just very nerve wracking knowing that a small dagger was essentially being shot through my body, guided only by the fuzzy images on an ultrasound screen. But again, having Dr. Scanga there made things better and I was thankful for that.  I had to spend the next few hours laying on my right side in order to keep pressure on the liver to avoid any internal bleeding that may have occurred from the biopsy.  Keep in mind, this was my second biopsy in less than a week so I was pretty sore from all the poking and prodding.

Once I was allowed to get up and walk around I took these pictures of the biopsy site.  The black lines are just permanent marker where the doctor marked his entry point once he found it on the ultrasound.  The actual injection site was a very small hole, about the size of the tip of an ink pen.  The main concern is never the outward aftermath, but rather the internal sate of the liver.  Thankfully I didn't have any issues and there was no bleeding following either of the biopsies.

 The doctors ordered my pathology report from the biopsy to be read STAT and later that evening I posted this happy, joyous update!

"Finally, some GOOD news!! My doctor just reported to me personally that the liver biopsy showed MUCH improvement and no real signs of chronic rejection at this point! They were very pleased with the changes in pathology, giving them great hope that this will definitely be a battle we can win! Now the goal is to find the perfect balance of anti rejection medications and doses so that there is absolutely no opportunity for anymore episodes. This will require some tweaking on their part as they experiment with various amounts and levels but it's something I am more than willing to put up with, as compared to the alternative. Best of all, she said I could go home in the morning as long as my biopsy site continues to heal! I have also been cleared to travel home to Florida for Easter, which was something I was really holding out hope for. I am thankful beyond words for all of this and so much more. God is so faithful and I am so undeserving!"

While I was overjoyed to be free to leave the hospital, it was bittersweet because I was not ready to leave my new friend Hope.  I had stayed with her family downstairs in the lobby during her transplant and was relieved to hear that the surgery went perfectly.  She even ended up having the same surgeon that I did and he personally came to my room following her transplant and told me how well she was doing.  She was taken to a different floor for recovery so I didn't get to see her again.  Her family was very sweet to come visit me a few times before I left and gave me updates on how her recovery was going.

After 11 days I was finally released to go home on March 31st, which ironically happened to be the 8th anniversary of the day Matthew proposed to me.  Eight years prior neither of us any clue that our first decade of marriage would be riddled with surgeries, sickness, hospital stays or life threatening diseases.  Neither of us could have predicted the ways in which our marriage and our faith would be tested and refined and strengthened.  We had no idea what an incredible journey we were about to embark on.  I'm glad that we didn't know.  I'm thankful for the ways in which we have grown closer as a couple and I know those growing pains could not have happened had it not been for the hurdles we overcame together. We make a pretty good team and I am proud of the way we've overcome as a family, with the Lord's help of course.

A few days later we were off to Florida to spend my favorite holiday with our families and we were happy to be able to continue with our Easter traditions as usual.  Just as with every other holiday, I had never been more excited about dying eggs and getting dressed up in pretty new church clothes as I was this year.  Theses little things were such a gift to me and I was so incredibly thankful to be a part of them.

Annual Easter egg hunt with my Tallahassee BFFs and our kiddos

Easter Sunday with my beautiful girl

Slightly yellow and moderately bruised up, but happy to be on my way to church with my family to celebrate the resurrection of my savior Jesus Christ!

I've been dying eggs at my Grandparents' house on Easter Sunday since before I could walk.  I wasn't about to miss out on sharing this tradition with my girl.

Cousins, continuing the tradition

 Family

My eyes may show evidence of a raging war going on inside of me, but my smile shows evidence of a full and happy heart!!

I am happy to say that my March rejection and readmission was the last major obstacle that I've faced and since then I have been sailing along pretty smoothly.  I've gone five months with NO hospitalizations and that is the longest stretch yet!!  In those five months I have not wasted a single second, but rather tried my best to live my life the its fullest potential.  I celebrated 7 wonderful years of marriage with my unsung hero.  I celebrated my fifth Mother's Day.  I watched with pride as my precious daughter danced her little heart out in her ballet recital.  I enjoyed a much needed girls beach trip with some of my best friends.  I traveled to and from Tallahassee as often as I wanted with no restrictions on where I could go or how long I could stay.  We took our first family vacation since 2012.  I traveled to Texas to attend the funeral of a fellow transplant recipient who was taken from us far too soon.  I attended my nephew's first birthday party.  I celebrated in Nashville with a new friend as he received his long awaited gift of life.  I took my daughter swimming, to the park and on bike rides through the neighborhood.  I enjoyed cold ice cream and frozen treats on hot summer days and made countless trips to the movies, the craft store, the library and the mall.  I had lunch dates with friends and dinner dates with my husband. I proudly walked my daughter into her classroom on the first day of her last year of pre-school.   I have watched in amazement as my four year old discovers her passion for the piano, dance and art.  To put it simply, I HAVE LIVED.  For the first time in a very long time I have truly savored every moment, every memory and every opportunity.  I hope I never lose this feeling of gratitude that I have right now.  I hope I never grow cold to the simple pleasures in life or become so consumed with busy-ness that I fail to recognize God's blessings and His goodness.  This journey to a miracle has changed my life in ways I could never describe in words.  May my experiences continually shape me into a better wife, mother, friend, daughter, sister and Christian.  That is my prayer.

I continue getting routine lab work done every other week and my numbers continue to fluctuate, but they are in a holding pattern within a safe range right now.  My energy is still lacking but my drive for life is not!  Many days I get frustrated that my body cannot keep up with the demands of everyday life but then I quickly remind myself of where I've been and how much worse it could be.  I continue to be thankful for the little things but I remain in a state of emotional confusion when I think of my donor---which is every single day.  Even now, nearly a year later, I still struggle with feelings of guilt, sadness and curiosity.  I am praying that in time, the Lord will bring me contentment in this area and will settle my mind and my heart and allow me to move on past these feelings.  More than anything I am grateful, thankful and humbled when I think of my donor.  I may never know who they were or what their story was but one thing will remain constant and that is my admiration for their willingness to selflessly give the most precious and priceless gift, which is the gift of LIFE.

My journey has allowed me some of the most wonderful opportunities to meet the most incredible people I have ever known.  I have been blessed to watch in awe as their own journeys unfolded right before my eyes and I was taken back to memories and emotions I had tucked away for safe keeping.  I have rejoiced with many as they received their own life saving gift and have also been forced to grieve with some as not every story I've been witness to has had a happy ending.  The sting of death and the joy of new life have weighed heavily on my heart and mind and more than ever I am reminded of the frailty of the human life.  I watch with great anticipation as some are still patiently awaiting the call that their life saving gift is ready for them.  I listen as they tell me their frustrations with the waiting process and I offer encouragement when I can.  I constantly urge friends, family and strangers alike to consider becoming an organ donor and I am heartbroken and even angry when they are not willing to make that commitment.  This is my life and these are the everyday thoughts and feelings of a transplant recipient.  

  Being a transplant patient is a life long commitment and I will always remain under the close care of my doctors and therefore I still spend a great deal of time at Vanderbilt.  Each time I go, I make a trip to the 7th floor to say hello to the nurses on the transplant floor that have taken such wonderful care of me.  They know me by name and are always happy to see me as a friend rather than as a patient!  I also make sure to take a picture in my favorite spot so that I can look back and see how far I've come.  

I love this progression......

September 2014--Just a few days after my transplant

November 2014

January 2015

March 2015

May 2015

June 2015

July 2015

Kyndall is no stranger to the transplant floor and she loves going and visiting the nurses and doctors just as much as I do!  She told me on our last visit that she wanted to be a nurse when she grows up so that she can take care of people in the same way they took care of me.  

We attended the Donate Life events at Vanderbilt in April

Mrs. April is one of her favorite nurses.  Here she is wrapping Mrs. April's arm with coban.

 

I just celebrated 11 months with Grace and in just a few more weeks I will be celebrating my ONE YEAR liverversary!  I absolutely cannot believe it's been a year.

As I said, transplant life is a lifelong commitment and it will be a lifelong battle against my own immune system, which is trying its very best to destroy my precious Grace.  In order to keep my beast of an immune system from doing this, I must take a large amount of immunosuppressant medications.  This in turn causes me to be very susceptible to germs and infections.  I virtually have no immune system and if I was to catch even the most minor cold, it could get very serious very quickly.  I certainly don't live in a bubble, but I try to be careful.  Last week I had to take my daughter to the pediatrician and since everyone knows the pediatrician's office is nothing more than a giant breeding ground for germs, I decided it was best to wear a mask.  I washed my hands and was extremely cautious, yet I still spent the next three days fighting off a nasty cold.  Such is the life of a transplant patient.

Unfortunately, my career as a dental hygienist is most likely over.  Since avoiding germs is a huge part of staying well, it doesn't seem very wise to spend 8 hours a day looking into peoples' mouths and cleaning plaque from their teeth.  I'm disappointed, but I suppose it's for the best.  Maybe one day I can get back to it but for now it's definitely out of the question.

I still have to get scopes done twice a year to make sure that my small intestine hasn't been affected by my immune system.  I had one earlier this week and my GI doctor gave me a wonderful report and said that everything looked "perfect"---his exact words!  I was SO relieved to hear this good news!  I celebrated with a warm hug from my biggest fan, my four year old.

Remember my friend "Hope"?  I have kept in close contact with her since March and have loved hearing how well she's doing.  I hadn't seen her outside of the hospital until earlier this week when I had the pleasure of enjoying a sweet, sweet reunion with my special friend! It was so good to touch her and hug her and hear her talk of how she is now celebrating FIVE months with her new liver which she named "Faith".  We shared tears of thankfulness as we reminisced over lunch and talked of our experiences, our struggles and our triumphs.  There is no bond quite like the one that two transplant recipients share.  It's unexplainable and impossible to recreate this type of relationship with anyone else unless they have lived this life and walked this path.  I am so thankful for my friend Roxanne and the way that the Lord put her in my life in order to take the focus off of myself during my time of self pity.  I needed her just as much as she needed me and I know that I have found a lifelong friend in this precious sister!

We are two very grateful souls, representing four amazing lives!

I will return to Vanderbilt in two weeks for my ONE YEAR follow up with my transplant team.  ONE YEAR.  That is mind blowing to me.  In some ways it seems like just yesterday that I was unsuspectingly driving Kyndall to dance class and received the call that would change my life forever.  In other ways it seems like years ago since I was laying in that hospital bed crying out in pain, wishing for death and thinking I had made the biggest mistake of my life. 

I plan to make September 16th a giant celebration of Grace and I can't think of anywhere more appropriate to spend it than with my transplant team.  I hope to receive a good report and I look forward to visiting all my favorite nurses and doctors and reflecting on the past year.  I also have a host of questions for my doctors, with the most important question being the question of more babies.  I am hopeful that they will give their blessings, but also preparing myself for the possibility of this not being an option.  There are so many factors to consider, including my own health and safety and overall well being.  I have a feeling it will not be a simple "yes" or "no" answer.  Either way, I am praying for contentment in the answer I'm given.

 I am proud of how far I've come but I also know I have a very long way to go.  I've learned that I am much stronger than I ever thought I was and I plan to use that strength to get healthier with each passing year.  I want to do this not only for myself, but for my daughter and my husband and especially for my donor.  I hope that in everything I do I make these people proud.  I pray that I am able use the precious gift I was given to bring happiness and hope and light to this dark and sad world that we live in.  More than anything I want to make the most of every single moment and not take a single breath for granted.  Life is a GIFT and I have been given this gift TWICE!  I absolutely cannot afford to waste that!

My story is far from over, but I pray that from a medical aspect, the final chapter has been written.  I heard this song for the first time a few weeks ago and immediately I claimed it as my new favorite. 

My Story 

"To tell you my story is to tell of HIM". 

May HE always be the focus of my story!