My Journey to a Miracle--Part 3

The first few days in our Nashville apartment were definitely a time of adjustment for me.  Although I was overjoyed to be free from the confines of a hospital room, I was nervous that we would do something "wrong" that would potentially harm me.  I was more nervous coming home from the hospital with my new liver than I was when I came home from the hospital with my new baby!!  Mom worked hard to play the role of a nurse, chef and personal assistant.  She made sure I was eating healthy foods (a monumental task in and of itself!), taking my medications on time (VERY important!), checking my blood sugar (pain in the rear), getting to and from appointments and most of all, RESTING.  I was very thankful to be out of the hospital but still very homesick for my real home.  Our apartment was at the Villages at Vanderbilt which was literally across the street from the hospital.  I could have walked to my appointments if I wanted to!

My Mom was very strict on my diet and took her job very seriously.  I had to closely monitor my sodium intake as well as my sugars.  For the first few months I was considered temporarily diabetic due to the high amounts of steroids I was on.  This meant checking my blood sugar several times a day, administering insulin and most importantly staying on a healthy diet.  Typically, what you see below would NOT be my choice for lunch!  But, I was determined to do whatever it took to get myself on the road to recovery and ultimately on the road HOME!

Even though I had been discharged from the hospital, I was still under VERY close watch by the transplant team.  They were in constant communication with my Mom either by phone or e-mail.  I also got blood work done three times a week at the hospital and I saw my transplant team once a week, on Wednesdays.  As much as I hate getting labs drawn, I actually found myself looking forward to these days.  I had to be at the lab at 7:30 a.m. which sounds awful for a non-morning person like myself but since I wasn't sleeping much anyway it wasn't too difficult to get there on time.  These early morning trips over to the hospital were good for me in that they gave me something to look forward to.  Getting up and out of the apartment was vital to keeping my spirits up and keeping me active.  Usually Mom and I would go eat breakfast somewhere after my labs were drawn, since we were up and out already.  I also enjoyed these mornings because it gave me a chance to meet other liver transplant patients and talk to them about their experience.  It never failed that at 7:30 sharp you could find a waiting room full of post-transplant patients anxiously awaiting their labs.  What I looked most forward to each week was Wednesdays which were "clinic days".  This is when I was able to see my team, talk about my progress and get an idea of what the next step would be in my recovery.  I can't explain in words how much my transplant team meant (and still means) to me.  They were like family to us and interacting with them each week was fun for me.  Meeting with  my surgeon every Wednesday and hearing him tell me how wonderful I was doing was life-giving to me.  My worn and weary body, mind and spirit desperately needed to hear those words each week.

Waiting for labs during one of my visits over to the hospital.  With all of the germs, sickness and EBOLA going around, I always wore my mask when I left my apartment.  Being a dental hygienist, I was used to it since this was a part of my daily wardrobe when I was working!

Although I looked forward to my mornings out, they also exhausted me to the point that I would spend the entire next day just resting.  That was very frustrating to me.  I was not prepared for how easily I would become worn down and tired.  I was very fatigued prior to my transplant but this was different.  I could push through before and just deal with the fatigue but post transplant I was also dealing with pain from my incision, swelling in my feet and a few side effects from the medications.  These things made plenty of rest crucial to my recovery and would knock me down pretty quickly.

Speaking of rest, the entire time I was in my apartment I slept in a recliner.  (And even continued for this for a few weeks once I got home.) It was the only way I could get any sleep due to the pain from my incision.  When I would try to lay flat it felt like my incision was too tight and that my staples were pulling and that my skin was stretching too far.  I tried several nights to sleep in the bed and ended up screaming out in pain for my Mom to come get me up.  It was terrible. It was actually several months before I was able to lay completely flat in a bed.  I slept in a semi-reclined position in that chair as best I could for an entire month, which made for some very long nights.  I remember waking up all through the night thinking "It's gotta be morning by now" only to realize just two hours had passed since the last time I woke up wondering the same thing.  I spent a lot of nights just starring at the ceiling and doing a lot of deep thinking.  It was during those times that I thought a lot about my donor, wondering who they were, how they died and longing for my unanswered questions to be resolved.  It was also during those times that I really missed Kyndall, Matthew, my home, my friends and just the everyday things that I was accustomed to.  For someone who typically loves her sleep, I dreaded the nights during that time.  They were very lonely.

 This is where I spent the majority of my time, in my recliner under a blanket with my phone and laptop handy.  I forgot to mention--I was way too weak to get out of the recliner myself so my poor Mom had to help me up each time, even several times throughout the night. She couldn't hear me yelling when she was in her bedroom, so I would have to call her on her cell phone and wake her up.  This made for some "busy" nights once I began taking a diuretic to reduce the swelling!  I must have made 10 trips to the bathroom each night.  No wonder I never slept!

It wasn't long before I started receiving mail at my apartment.  If you know me at all then you know that I love nothing more than getting "real" mail.  My friend Laura was the first one to surprise me with a sweet package and it absolutely made my day!  Her package would be the first of hundreds (literally) to come!  These little pieces of encouragement, love and reminders of HOME carried me through some very difficult days!  I still have every single card, note and letter that was sent to me.  Sometimes when I'm feeling discouraged or down I just pull a couple of them out and read them and I'm reminded of how very blessed I am to have such wonderful friends and family who love me so!

On 9/22/14, just six days post transplant, I began noticing some of my previous symptoms returning.  I had no appetite, I was itching again and some of my labs were beginning to look a little wonky.  The team stayed in constant communication with my Mom that day but didn't insist that I be seen just yet.  It wasn't until the next afternoon when I spiked a fever that they delivered the devastating news that I would have to be re-admitted.  It had been one week since my surgery and I was headed back to the transplant floor to be monitored.  I was angry, disappointed and frustrated to say the least!  I think I even tried to refuse the admission but obviously that didn't get me very far.

Once I was admitted, they began the whole shebang all over again---The traumatic experience of starting an IV on my frail and worn out veins, lab work, tests, scans and lots of unanswered questions.  My labs showed an increase in my bilirubin and an increase in my white blood cell count.  These things, along with the fever and a few other symptoms, led the doctors to believe there were one of three issues going on.  The first thought was a blockage in the bile ducts.  This was the whole reason I needed a transplant in the first place and I had experienced many blockages in the past.  The second possibility was an infection.  The final (and most scary) possibility was the early stages of rejection.  That word sent chills down our spines when the doctors said it to us for the first time.

Later that afternoon I was taken down to radiology for a CT scan with contrast in order to better visualize my liver and all of the bile ducts.  I've had many CT scans with contrast before, but this one would prove to be the most traumatic of all.  What is normally a simple procedure turned into an absolute nightmare.  First of all, it was impossible for me to lay flat on the table of the scanner.  They were very insensitive to me and demanded that I just lay back and deal with it.  Their unkindness, coupled with my emotions running high brought me to tears and it was only then that they began making accommodations for me with pillows and such.  It was still extremely uncomfortable but I knew it would only last a few minutes and I resolved to just work through the pain.  Once I was inside the tube, they began shooting the contrast through my IV.  I've had this done more times than I can count but as soon as that contrast hit my vein I knew something was different this time.  I yelled out in pain and screamed at the top of my lungs for them to stop the contrast.  It felt as though my arm had been blasted off and I was bawling.  The radiology tech came running over to examine, only to find that the contrast had blown my vein out due to its fragile state. It just couldn't handle that blast of chemicals.  That contrast was now floating around in my arm, which is never a good thing.  Immediately they returned me to my room, where I continued to do the ugly cry for a good 10 or 15 minutes.  More than just the pain, I was hurt that they weren't more sensitive to me.  For crying out loud, I had just undergone one of the most traumatic surgeries that exists and they couldn't even take the time to be gentle and accommodating to my needs.  I was physically hurting from the IV being blown out as well as my incision being stretched but I was also emotionally overwhelmed which manifested itself in the form of many tears that evening.

My mother-in-law was very sweet to send me pictures of Kyndall as often as possible.  This always brought a smile to my face, which on this evening was desperately needed.

Welcome to Ponyville!  I think my child owns every single piece of My Little Pony paraphernalia that has ever been made!

Once my emotions were in check and things had calmed down a little, they sent in IV therapy to try and get a new IV started.  Despite their attempts (complete with an ultrasound of my arms), they were unable to find a suitable vein that evening.  My body was simply worn out and I had been stuck so many times there was just nothing left.  I was also very dehydrated because they had been withholding food and drink in order to let my liver rest.  They had been giving me IV fluids but now that was no longer an option.  My team weighed their options and decided that rather than trying another CT scan with contrast, they would settle for an ultrasound of my new liver.  There was no IV required for that and it was a simple procedure.  If the ultrasound didn't show what they needed to see, they would attempt the CT again.  In order to rehydrate me, they lifted the no food/drink restriction at which point I sent my Mom straight downstairs to get me a burger and fries!  Forget the low sodium and blood sugar....I was starving!

The ultrasound was done and it came back somewhat in conclusive.  It showed a suspicious area of what they believed to be ascites, which is a collection of fluid.  Since this didn't give them the answers they needed, they decided to attempt the CT with contrast once again.  The next morning they were able to get an IV started again, thanks to the re hydration from the day before via food and drink.  Just before going down for the scan, they flushed my IV line with a dose of strong pain medicine in hopes of reducing the incisional pain that I was sure to encounter when asked to lay flat on the stretcher.

Off to radiology again for round 2.....

After the CT, my team explained that they were still exploring two possibilities.  Their gut feeling was that I was experiencing the early stages of rejection.  Just to be on the safe side, they went ahead and increased my anti rejection medications and began taking the necessary precautions to prevent my body from destroying my new liver.  The other possibility remained as a pocket of fluid that could be interfering with the flow of bile out of my liver.  They consulted with radiology and the entire transplant team for more than a day to decide what to do if this was in fact the case.  Just like with the previous blockages that I'd experienced prior to transplant, the treatment was to go in and "stretch" the bile ducts and try to dislodge whatever is causing the possible blockage.  However, being just a week post transplant this was a pretty risky endeavour and there was a great risk to my new liver.  The surgeon explained that I was carefully stitched together on the inside and there had not been enough time for internal healing and for things to "scar over".  Inserting a scope and placing a stint could potentially cause some significant issues.  So, at this point we didn't know what they were going to do.  My bilirubin was up to a 16.7 and climbing.  (The normal range is .2 to 1.2)  At this point I didn't know what to hope for---rejection, which could be treated aggressively with medication....or this blockage which could pose potential dangers to my new liver.  I was weak, worn and just overwhelmed.  I wondered many times if I would be facing another transplant in the coming days.  What if they couldn't fix this?  How did I go from being their "star patient" to finding myself in the middle of this big ugly mess??

Finally, on September 25th they decided not to do the Hudson's Loop procedure because they felt my surgery was just too fresh and at best they might be able to take pictures of the issue, but not actually be able to fix it.  So, it was decided that I would have an ultrasound guided liver biopsy instead.  I had already gone through several of these prior to my transplant. In fact, it was a needle biopsy that first confirmed I had an auto-immune disorder back in 2006.  Even though I knew what to expect, I was extra nervous this time.  I felt a sense of protection over my new gift and I was nervous to say the least.  

Getting unhooked to be sent down to radiology (again) for my biopsy

As expected, the biopsy wasn't that big of a deal.  It's definitely not as bad as it sounds.  They gave me a mild form of anesthesia (conscious sedation) to calm my nerves, which also gives me amnesia so I really don't remember much.  I do know that during the procedure an ultrasound is used to find the perfect spot to enter with the needle.  They essentially "shoot" the long needle through my ribs, carefully avoiding any other vital organs.  (Now you know why they sedate you!)  This could be very nerve wracking otherwise.  After the biopsy is taken, they turned down the medication and I began breathing pure oxygen and this is when I started remembering things.  The first thing I remember is telling the radiologist that I was in a lot of pain, but not in the area of my liver or where the needle had been inserted.  Instead, this pain was coming from my left side and was getting more and more intense.  They quickly took me back to my room where the doctors began investigating this new pain, which was getting more and more intense by the hour.

As the team worked to figure out the source of my pain, I was kept comfortable on LOTS of pain medications, both through my IV and in pill form.  It wasn't long after my biopsy that the results were in and it was confirmed that I was in a state of rejection.  Dr. Gorden and the rest of the transplant team assured me this was "fixable" and that there was no need to worry.  Easier said than done!  They continued with the high doses of IV steroids for several days and increased my Prograf dose as well.  I was told that the liver itself looked good so far and that there was no permanent damage done at this point.  Everything was reversible, but it would take some time.  In the meantime, all I could focus on was the intense and almost unbearable pain I was having in my side.  As time went on I began to struggle to breathe and to talk, much less move.  The pain was awful.  This of course was very concerning to everyone.  

Despite the pain, they encouraged me to walk as much as possible.  Getting up and out of the bed is not only good for you, but it also makes you feel better.  I could only go a few doors down before having to stop, but it was progress.

Pushing through the pain and making my rounds

Here's how I really felt each time they told me I needed to get up and walk the halls....

This is one of my favorite pictures from my entire journey.  I would pass this sign every time I went walking and it gave me so much hope for the future!

Throughout my entire time in Nashville my Mom was my primary care giver, staying with me the entire time and sitting with me at the hospital day in and day out.  Matthew would pop over from Jackson as often as possible, usually once during the middle of the week and of course on the weekends.  I always looked forward to him coming back to me because with him there I just felt like things were "normal".....Or as close to normal as they could be.  I missed Kyndall terribly but I Skyped with her often and talked to her on the phone.  

My Prince arrived for an overnight visit (9/26/14---Ten days post-op)

My appetite was almost non-existent but Matthew tried everything in his power to get me to eat....even cutting my food into small little bites.

I am so thankful that Matthew was there that night.  The Lord knew I would need him in a big way!  Somewhere around midnight the pain in my side got so intense that I couldn't handle it any longer.  Considering all of the surgeries I've had I credit myself with a pretty high tolerance for pain.  This, however, was like nothing I had ever felt before.  I honestly thought I was dying.  I was screaming so loudly from my hospital bed that five or six nurses came running in just to see what was wrong and to keep me from disturbing the other patients.  I couldn't even speak, only cry and scream.  Matthew explained what was going on and immediately they began slamming my IV with morphine and dilaudid.  The medication didn't touch the pain or give me any relief at all.  I begged them to do something, anything to take away the misery.  It was getting harder and harder to breath.  My chest was tightening and I could barely talk.  At one point I screamed out through my pain for them to please put me in a medically induced coma until the pain subsided.  It sounds crazy now, but I was serious.  For the first time in my entire life I literally cried out to Jesus.  Through my sobs and screams I pleaded with Him outloud to take this pain away and to give me relief.  I think I freaked out every nurse on the transplant floor but I didn't care....I was desperate for an end to this misery.  I truly thought I was dying.

The next day (9/27/14) they ordered several tests and scans to rule out things like kidney stones.  I found that I was no longer able to eat or drink because it would trigger this awful pain once again.  I was miserable when I was awake so in order to keep me comfortable the nurses continued to pump me full of morphine which made me sleep.  Sleeping through the pain was the only way I survived.  At this point my bilirubin was continuing to rise (It was at 20.8 as opposed to 1.2 which is normal) but they assured us that the rejection was under control.  

Getting ready to go back to radiology for yet another CT scan to rule out kidney stones.  I was pretty much a zombie at this point because of all the pain medication.  I barely remember the next few days, but that's probably not a bad thing!

Later that afternoon I had a wonderful visit with my hometown (Tallahassee) friend Mitzi.  She was in Nashville running in a half marathon and being the sweetheart that she is, came by to cheer me up.  Having a familiar face in my hospital room was so good for me and really lifted my spirits.  

I also had a nice visit with my friends Jessica, Stew and baby Finn who would be born just a few days later!  They came bearing all kinds of goodies including two very important items---dry shampoo and a giant Coke Icee!  

Good drugs and a Coke Icee made for a happy day

Jessica was my nurse at Vanderbilt during my last major surgery in the summer of 2013 and we have stayed friends ever since.  

Visits from friends made even the most difficult days bearable!

At this point we still did not know the source of the pain but it was being well controlled with medication and I was able to at least stay awake and feel human again.  I refused to eat because as I said, this would undoubtedly set off the pain again and it just wasn't worth it to me.  I think I went something like 10 or 12 days straight without eating.  The hunger pains were bearable compared to what I had experienced.

I missed Kyndall like crazy and I longed to kiss her face and hold her hand.  The things that I used to dread (bath time, brushing teeth, combing tangled hair) suddenly became so desirable to me.  I just longed for my normal life to return so that I could enjoy these little things that I had taken for granted.  I never realized I could miss the comforts of home as much as I did.  

Pictures and Skype saved me when it came to missing my sweet girl.  I hadn't seen her since September 20th, when I made a surprise appearance at her 4th birthday party.  It had now been over a week and I was aching for some time with her.  As you can see, she was having a blast back home in Jackson with her Nonie.  She missed me, but not nearly as much as I missed her!

Pretty soon the cards and packages started flooding my apartment mailbox and this was such a blessing to me.  I received cards from people I don't even know telling me they were praying for me or that I was on their church's prayer list.  I was sent all kinds of goodies ranging from gift cards to Jamberry nail wraps to my favorite junk food and everything in between.  It was such a treat and really lifted my spirits.

The next day (9/29/14) I was told that I would be discharged back to my apartment.  YAY!  The source of the pain was still unknown but as long as I didn't eat it remained bearable.  I was also beginning to have some fluid build up, known as ascites, which is common both prior to transplant as well as post transplant.  I was sent back to my apartment with diuretics in hopes that the fluid build up would subside, as it can be quite awful if it gets out of control.  At this point my bilirubin was down to 9.9 which was still crazy high, but much better than it had been.  This proved that the increase in anti-rejection meds was working, and that was a huge praise.  

One last visit from my friend Jessica (She's a med student at Vanderbilt) and then I was on my way across the street to my apartment!

I couldn't wait to get back to my "home away from home" and be free from wires, tubes, monitors and beeping machines.  I was looking forward to feeling the sunshine on my skin and the fresh air in my lungs.  I missed the little freedoms like being able to go to the bathroom without having to push an IV pole along with me.  I missed being able to take a shower and wash my hair with both hands, rather than having one wrapped in plastic.  I missed just having my own space and being able to make my own decisions.  I was ready to leave that place and had no intentions of returning!  Little did I know, the worst was still yet to come....