Grace the liver is a sneaky little booger. Just when things seem to be going well, she likes to remind me that she's still a very high maintenance girl who refuses to be forgotten about. Actually, it's really unfair to blame Grace because she is merely the innocent victim of my own ravenous immune system.
For the third time since my transplant 20 months ago, I have found myself in another state of rejection. It's been over a year since my last rejection episode and things have been going very well since that last hospitalization in March of 2015. I've been feeling good, eating better, exercising for the first time in my life and being more active than I have in a very long time. I was finally feeling like I was getting back to life as usual.
Then, about three weeks ago as we were in the throws of the busiest month of the entire year with dance recitals, pre-school graduation, piano recitals, Mother's Day, birthdays, kindergarten registration, wedding season, our anniversary, etc. etc.....I began to feel that things were just a little "off". I thought maybe it was just the stress of being so busy so I ignored my own body's cries for help and carried on with our hectic schedule. I just kept thinking "If I can just make it through May, I will finally catch my breath and I will take time to rest".
Knowing my body as well as I do, one would think that as my symptoms got worse, I would stop everything and take care of myself. Yes, one would think. I should know by now that these things don't just fix themselves and the longer I wait, the worse it ends up being in the end. As the month of May went on, I began to notice some very distinct changes taking place that I could no longer chalk up to fatigue or just being overly tired. My eyes were turning a very familiar shade of yellow, my skin was beginning to look a little "tan" and worst of all, the intense itching had returned all over my body. I knew something was very wrong.
Fake it till you make it was the name of the game as I got through the busy month of May. Feeling pretty awful here but determined to stick around and be a part of every activity on the calendar.
The first sign is always my eyes. They were just beginning to turn yellow here but it was enough for me to notice.
Fake it till you make it was the name of the game as I got through the busy month of May. Feeling pretty awful here but determined to stick around and be a part of every activity on the calendar.
The first sign is always my eyes. They were just beginning to turn yellow here but it was enough for me to notice.
I finally had some labs drawn and admitted to my transplant team that I wasn't feeling 100%. I still didn't disclose ALL of my symptoms because I was afraid they would toss me back in the hospital and I would be forced to miss all of the exciting things I mentioned above that we had been looking so forward to. Not surprisingly, my labs reflected what my body had already been trying to tell me--My liver was in distress. My liver enzymes and liver functions were all elevated, my white blood cell counts were higher than usual and my bilirubin was steadily climbing, which is what would explain the yellowing and the itching.
Even still, I told them that I wasn't willing to do any testing if it would cause me to miss out on already scheduled activities. I caught a lot of grief from family and friends over this but there was no changing my mind. I've missed out on far too many things already as a result of my health and there comes a point when you just have to say ENOUGH. That's not to say I took any of this lightly, but there is a very delicate balance between truly living your life to the fullest and living a life of fear, wrapped up in constant worry. Balancing a life of chronic illness while striving to be the best Mom and wife I can be has always been a bit of a challenge. I will never forget my transplant surgeon telling me last year "We didn't work this hard to give you a healthy new liver for you to live in a bubble. We gave you this liver because we want you to live a beautiful, happy life!"
The week after the dance recital, my Mom and sister stuck around to visit. I had all kinds of fun things planned and I insisted we make a trip to the Memphis Zoo. Looking back, this was a very unwise choice and I should have listened to them and stayed home. I nearly didn't make it out of the park that day due to the extreme heat and my fragile, exhausted state. But again, fake it till you make it is the way I like to roll.
The week after the dance recital, my Mom and sister stuck around to visit. I had all kinds of fun things planned and I insisted we make a trip to the Memphis Zoo. Looking back, this was a very unwise choice and I should have listened to them and stayed home. I nearly didn't make it out of the park that day due to the extreme heat and my fragile, exhausted state. But again, fake it till you make it is the way I like to roll.
On Wednesday May 26th I traveled to Vanderbilt for an ultrasound of my liver and abdomen. By this point my symptoms had been going on for about 3 weeks, but my team had only known for two days. They got me in quickly, squeezing my appointment onto a day that would allow me not to miss anything I had going on back home. This also worked out great because my Mom and sister were still here visiting for the week since we had just come off the heels of the big dance recital weekend.
The ultrasound, combined with the labs I had drawn were going to be used to determine one of two outcomes. Either I was experiencing another rejection or there was a blockage in the tiny bile ducts of my liver. Everyone, my doctor included, really thought it was going to be the second option....a blockage. I've had more of those than I can count over the past 8 years and the fix is relatively simple. The way my labs were trending along with the symptoms I was feeling pointed directly to a blockage and I just knew this ultrasound was going to show that and we could get this thing taken care of and move on with life as usual.
Unfortunately, the ultrasound was inconclusive and did not give a clear diagnoses regarding the possible blockage. I was sent home and told that I would need additional imaging and testing done in order to more specifically address the problem. On my way home from Vanderbilt Wednesday, they called and told me they could fit me in for the MRCP scan on Thursday afternoon. I went ahead and took the appointment and then pondered it all the way home to Jackson. If I took this appointment for the additional scan on Thursday, I would most definitely miss Kyndall's end of year piano recital which was scheduled for the same night. I thought and prayed and pondered for many hours before deciding that I was going to call and cancel it. There was no way I could walk in the door after being gone all day and break the news to my sweet girl that Mommy wasn't going to be there to hear her play the next night. I just couldn't do it. I found myself feeling angry that I even had to make that decision. I was frustrated that this is where life has taken our family.....to a point where I am forced to choose between my child or my own well being. I began to feel jealous and bitter towards all the other families out there who have absolutely no clue what it's like to live this way. Lots and lots of ugly emotions brewed in my heart that afternoon but when I walked in the back door and was greeted with a hand made "feel better soon" card and a giant hug, there was no changing my mind. I was cancelling that scan for the next day and going to her piano recital.
How could I come home and tell this sweet face I was going to miss her long awaited performance? I couldn't. Looking back at this picture I realize how very sick I was. I look awful.
I called first thing the next morning and told them of my plans. The nurse was less than understanding but she agreed to try and get me back in as soon as possible for the scan. I took Kyndall to her kindergarten testing that morning (something else that was important to me) and then we enjoyed the rest of the day with my Mom, sister and nephew before getting Kyndall all dressed up for her big piano performance. I felt like death and probably looked like it too, but nothing made me prouder than being there to see her play the piano for those short 5 minutes.
There may have been a nasty war raging inside of my body that night, but my heart was overflowing with joy and there was nowhere else I would have been but right there with my family. These are the moments that make it all worth fighting for.
The nurse called back at some point and said they couldn't see me until the following Tuesday for the MRCP scan. Keep in mind, this wasn't even an appointment to "fix" anything, but merely still an attempt to figure out the problem. I was pretty upset that I had to wait an entire five days before they could even work me in, but I was willing to take that penalty since I chose the recital over the previous available appointment. Over the next five days I began to feel worse and worse. It got to the point where the itching was so intense at night that I couldn't even get more than an hour or two of sleep. This on top of the fatigue from a malfunctioning liver just compounded my symptoms and left me weak and miserable. I was nauseous, had no appetite and even dropped several pounds simply from not eating. My eyes were getting more yellow by the day and my labs continued to fluctuate. But, all I could do was wait it out until the scan was done.
My Mom and sister left on Saturday the 28th and took Kyndall back to Tallahassee with them. That was Memorial Day weekend and originally they had planned to stay through Monday but with me not feeling good there wasn't much fun to be had up here so they decided to leave a little earlier than planned which also gave me some time just to rest and do nothing as I continued to wait. The good thing is we had been planning for Kyndall to go back with them to Tallahassee all along. My Mom asked me earlier in the year if they could have Kyndall for two weeks during this time so that she could attend their church's Vacation Bible School and be there for a few other fun activities they had planned. So this was actually great timing because Kyndall didn't feel as if she was being shipped off once again due to Mommy's sickness. She was essentially going on a vacation that she had already been looking forward to. Silver linings.....they're there if you just look for them!
Soaking up some last minute love on my last night with Kyndall before she headed back to my parents' house in Tallahassee. This is the best medicine I've found!
In the midst of all of this, Matthew was schedule to be traveling a lot for work. Although I was more than capable to taking care of myself, my sweet friend Jennifer who lives in Houston asked if she could fly out here and help take me to my upcoming appointments at Vanderbilt. Of course I said "no way" but she insisted. You see, Jennifer is the friend I met last spring when she and her husband Craig temporarily moved to Nashville while he waited for a liver transplant. Through a series of twists and turns that can only be described as a "God thing", I met Jennifer and Craig and befriended them on the transplant floor at Vandy. Craig ended up needing two liver transplants back to back and then ended up not surviving the second one. Jennifer left Nashville on July 4th of last year to return home to Houston without her beloved husband. Over the past year I have remained in very close contact with Jennifer, making a trip to Houston for Craig's funeral as well as a return visit with Matthew and Kyndall this pat October. Our friendship feels like one that I've known forever and I am so thankful that our paths crossed when and where they did last Spring.
Jennifer has been feeling the urge to return to Nashville and specifically to Vanderbilt for some time in order to gain some closure from Craig's untimely and unexpected passing. When she found out I wasn't doing well, she said she knew she needed to come. As much as I tried to talk her out of it, there was no changing her mind. So, on Memorial Day she flew into Memphis where Matthew and I greeted her and brought her to our home in Jackson. Seeing her in person did my heart such good.
Reunited and so happy about it!
Having been a care taker for Craig, Jennifer knows all too well how crummy a person feels when their liver is acting up. So she was more than willing to help in any way needed while she was here. I am not one to ask for or accept help very graciously, but when I woke up on Tuesday at 5:30 in the morning for my MRCP scan I knew I wouldn't be able to drive myself all the way to Nashville. The nausea was beyond belief and my head was pounding. Jennifer never hesitated to jump in my driver's seat and navigate her way from Jackson to Nashville. Having her here for this was such a blessing because it allowed Matthew not to have to miss work in order to drive me over.
I had labs first thing Tuesday morning, followed by my long awaited MRCP scan of the liver. I was so anxious to get this scan done because I was confident it would be the determining factor in showing us there was a clear, obvious blockage in the bile ducts. They got my IV started, put me in a gown, had me drink some awful juice, and then they began the scan.
Within an hour of finishing the scan, my transplant nurse practitioner called me and said they had the results. Unfortunately, there was no blockage to be found. So this meant one thing and one thing only. REJECTION. I started crying over the phone as she gave me the news. She and my doctor seemed to be as shocked as I was at these strange findings. However, there was no time to ask questions because now that we knew what the problem was, it was time to proceed with the next step. The next step was an ultrasound guided needle biopsy. I've had many of these done over the years and although they're not quite as awful as they sound, I typically have a little more time to mentally and emotionally prepare myself for the procedure. Not this time! She told me to get straight down to the endoscopy lab because my doctor was working me in ASAP. I was so relieved that my own hepatologist was going to do the biopsy, rather than some radiologist that I don't even know. There's something to be said for the level of comfort and trust that comes along with familiarity in these situations. Dr. Scanga is so good to me and just knowing he would be the one standing there with me during the procedure gave me great peace.
By the middle of the afternoon I was being rolled into the endoscopy lab where Dr. Scanga carefully carried out the process of performing a needle biopsy. As I said, I've had these done several times before but they're a little nerve wracking since they are done without sedation. He agreed to give me a tiny bit of versed to relax me, but it's nothing like my beloved propofol that I love so much! Ha! I was awake for all of it and remember everything which is strange since typically I have no recollection of any of my medical procedures. He had me twist and contort my body in a way that would push my liver outward, and a bit to the right. He actually saw the scar on my rib cage where he performed the last biopsy and decided to use that as his entry point. An ultrasound is used to make sure that he is essentially aiming the needle in the correct direction as to not hit any other major organs and also to carefully navigate between ribs. He told me to take a deep breath in and then he shot the needle into my side.
It was over as quickly as it began and before I knew it he was holding up a tiny clear jar with a small sample of my liver it for me to see. It resembled a long and skinny spaghetti noodle, except it was a brownish color. It was fascinating to see!
I was taken into recovery where I would have to lay on my right side for nearly two hours in order to avoid any internal bleeding. They brought Jennifer back into recovery to keep me company and together we shared some of the best belly laughs thanks in part to my somewhat loopy state as the versed was slowly leaving my system. It was strange not having Matthew or my Mom there with me, but Jennifer's presence was exactly what I needed. She was a constant, visible reminder to be thankful and grateful in the midst of feelings of frustrations and questions of "why me....why again?" I wouldn't have wanted anyone else with me that day. I think it was also therapeutic for her to be back in the place where she last said goodbye to Craig, but now with new memories to fill her mind.
Dr. Scanga came in once I was in a better state of mind and explained that pathology would be reading the biopsy results ASAP and that I'd be hearing from him or his nurse the next morning with plans of how to proceed.
Jennifer and I left the hospital around 6:30 and enjoyed a nice patio dinner in downtown Nashville before heading back to Jackson. Again, she drove me home since I was legally not allowed to drive myself after being given the versed. We laughed and cried all the way home before crashing for the night.
As promised, I received a call from my NP, Katie, the very next morning. Her news was once again not what I wanted to hear. She told me that I needed to begin heavy doses IV infusions of steroids as soon as possible in order to get this rejection under control quickly. If you've followed my transplant journey or you have a health journey of your own, then you probably already know all of the reasons why this news was devastating to me. To me, taking prednisone feels like pumping poison straight into my body. And slamming my system with it IV style is even worse. There are not enough words to adequately depict the amount of hatred I have for this necessary evil of a drug. It is satan in the form of medication. Pure evil packed into a tiny white pill. But, it's the only sure way to stop this ravenous and out of control immune system of mine. It has to be done. There's really no choice. Every time I've been in rejection this is the method of choice and every single time I cry and throw a fit and tell them I'm never doing this again.
This time was no exception. I cried....hung up the phone and threw a fit in the living room in front of Jennifer and Matthew and then told them I wasn't doing it. I told them it was MY body and MY choice and I was choosing not to take the treatment. I'm the one who has to live with all of the side effects and I'm the one who has to live a life of misery as it trashes my body. They both sat quietly watching as I stomped and cried and yelled and poured my heart out. Then, in her sweet, soft, gentle voice, Jennifer gently reminded me that Craig would do anything to be here, including agreeing to take a medication that would ultimately save his life. She went on to give me the most beautiful, loving guilt trip I've ever had in my entire life. Suddenly I realized how very childish I was acting and I was embarrassed and ashamed that I ever took it that far. How selfish I must have sounded. How utterly ungrateful I must have seemed. How she must have wanted to shake me and tell me that she'd do ANYTHING to have her husband back and yet I was mad because I had to suffer through some crappy side effects from a medication that would ultimately allow me to continue to live.
It wasn't until that moment that I realized there really was no choice in this matter. I called the nurse back and scheduled my infusions right away. They would begin the very next morning (Thursday) and I would need one Friday and Saturday mornings as well. It was the very same process I went through the last time this happened, only this time they weren't admitting me to the hospital which was a blessing in itself. I'd much rather drive back and forth three days in a row than to be stuck IN the hospital.
Shortly after I called the nurse back and got my three infusions scheduled, it was nearly time for Matthew to fly out to Dallas for his meeting. Jennifer would stay behind with me and take me to my first infusion the next morning, before flying back to Texas herself.
Matthew took us to lunch before he left, which was a good distraction from all that I had been feeling that morning. Jennifer and I spent the rest of that rainy afternoon on the couch relaxing together in our PJs. I felt like it was the last calm before the storm because I knew the next morning was going to be tough as I forced myself to begin the infusions. Having Jennifer here was such good medicine for my soul. There were SO many times I wanted to throw another fit or have myself another good cry but having her here as a physical reminder of all my many blessings kept me from slipping back into that awful mindset and allowing those ugly emotions to come out once again.
Thursday morning came EARLY as Jennifer and I woke up at 3:45 in order to be at Vanderbilt by 8:30 to begin my first infusion of steroids. I knew the infusions had to be done on the 7th floor, which is the transplant floor. I worried this would be hard for Jennifer since this is where she spent so much of her time during her last days with Craig. I tried to get her to stay downstairs but she insisted on going up with me. In typical Jennifer fashion, she handled it like a champ. That's not to say there weren't a few tears, but she held it together far better than I could have. That's saying a lot considering we were put in a room that was directly across the hall from the room where Craig was a patient.
Even as I sat waiting for the nurses to get my orders put in the the system and to start my IV, I contemplated getting up and walking out. I even said out loud to Jennifer...."If this isn't started in 10 minutes, I'm leaving."
Of course that didn't happen. The IV was placed and the medication began making its way into my body. I cried silent tears as I watched it flow into my veins, knowing that while it was saving my life, it was ultimately trashing my body from within and I knew it would only be a matter of time before I began to feel the awful side effects. A necessary evil in every sense of the word.
The infusion itself only took about 40 minutes. During that time, Jennifer's sister Casie came up to keep us company and to visit. Like Jennifer, Casie also lives in Texas but she happened to be vacationing in Nashville this very same week. She hadn't been back to Vanderbilt since Craig's passing either. Together, Casie and Jennifer kept me laughing and entertained and distracted while I received my treatment. I needed that laughter and that time with my sweet friends. Again, the timing couldn't have been better with Casie being in town....another silver lining.
These two kept a smile on my face throughout my entire appointment
Back where our friendship first began, almost exactly one year to the day! God's plans and His timing blow my mind sometimes. This time last year I barely knew this sweet soul and now here she was taking care of me in my own time of need. He's such a God of details!
When my infusion was complete, it was time to say goodbye to Jennifer. She was on her way back to Houston and I was on my way back to Jackson to rest up before returning the next morning for my second infusion. I hated to see her go but I was SO thankful for my time with her. I truly believe God urged her to come here in order to serve as a much needed wake up call for my selfish and ungrateful heart.
I came home and crashed Thursday night and waited for Matthew to arrive back home from his quick trip to Dallas. We packed our bags for the weekend and headed to Nashvhille on Friday morning for my second infusion. Once again, the timing worked out pretty well because several months ago we had already planned to spend that entire weekend in Nashville. I was committed to an event with the Crohn's and Colitis Foundation of America on Saturday morning and it was also meant to be a belated anniversary trip for us since Kyndall was away and we didn't really do much to celebrate back in April. So with two more infusions needed on Friday and Saturday mornings, we simply worked those into our weekend and made the best of it despite the fact that I wasn't exactly feeling 100%. We had tickets to the Opry and I had booked a tour of Nashville so knowing we had those things to look forward to made the infusions not seem so bad. Plus, I was really excited about my Crohn's and Colitis event with my Girls with Guts support group. There were more than enough silver linings to get me through those last two dreaded appointments.
Friday morning we woke up once again at 3:45 in order to be in Nashville by 8:30. This time when we arrived, they didn't have enough space for me in the infusion room so they put me in a regular patient room which was actually a treat. (Although, I did look over at Matthew once and tell him this felt a little too eerily familiar and may have been bringing up some feelings of PTSD!) It was nice to have a bed to sit in and a chair for Matthew to stretch out in while we waited for the infusion to be complete. Plus, I saw LOTS of familiar faces walk by as the transplant team did their "big rounds" on Friday morning. It was such a great feeling being remembered by all of these amazing people who took such great care of me not too long ago. It really says something about Vanderbilt when you are remembered and recognized and greeted with a hug and a smile. In a weird sort of way, going back to the transplant floor always feels a little bit like coming home to me. There is something very bittersweet about that place. So many memories held within those walls....both good and bad. It's where my miracle took place and those are the miracle workers who helped make it all happen for me. It thrilled my heart to have this little mini reunion on Friday morning and once again was a great distraction from the infusion itself. No tears or threats of running away took place Saturday morning so I call that a success!
I was in such a fog getting dressed early that morning that I didn't even realize the irony of the shirt I put on. "Grace" the liver was well represented that day!
My infusion was complete by mid morning so we headed off to explore the city and begin our fun little weekend getaway. As frequently as we visit Nashville, we're rarely able to do anything exciting or touristy. It's always about appointments and procedures. So we were excited to finally be tourists for a change. We headed over to the 12 South area where we had lunch at Edley's BBQ which had come highly recommended by many locals. The line was out the door so we knew that was a good sign and the food definitely did not disappoint! It was delicious and we will definitely be back again soon.
Next on my agenda was a stop at Opry Mills for new Vera Bradley goodies. I wanted to get Kyndall a new backpack and lunchbox for kindergarten and of course I needed something for myself as well! My sweet husband served as a great pack mule as I walked around the store tossing things his way.
Found this cute umbrella at the VB outlet too!
By mid-afternoon my fatigue was starting to settle in and so was the rain. So we made our way back to the hotel where we indulged in a rare treat that few will understand. PUBLIX SUBS. We are sorely deprived of the goodness of Publix here in Jackson and we often find ourselves craving one of their delicious sandwiches. There was a Publix next to our hotel and we were both down for a simple dinner so we dined fancy style in the hotel room with our sandwiches and chips that evening! Lame? Maybe. But it hit the spot!
Saturday morning was chaotic to say the least. I was scheduled for my very last infusion that morning but I also needed to be in downtown Nashville in Centennial Park for the Crohn's and Colitis Foundation fundraiser walk by 9:30-ish. I knew I needed to show up at the hospital as early as possible to get this infusion going, get my IV permanently removed, have my labs drawn one last time and book it over to the park. I was in charge of our team's matching t-shirts and I needed to be there in order to pass them out to everyone. Thankfully I was able to call the transplant floor on my way to the hospital and let them know I would be walking in the door any minute. They worked quickly to get my infusions done as fast as possible and get me on my way.
Since it was Saturday morning, I really didn't expect to see any familiar faces on the floor. However, it just so happened that Dr. Scanga was on service that day so he popped in and said hello to me and Matthew as he was doing morning rounds. He told us he's really never seen an immune system that operates quite like mine. Despite being on higher than therapeutic levels of anti-rejection medications and lots of immunosuppressing drugs, my system still managed to break through and cause a rejection. My immune system is a beast and a force to be reckoned with. It will likely be a lifelong battle against my own immunity to keep me healthy and out of a state of rejection. The down side to this is that when your immune system is compromised, you are at a much higher risk for infection from germs and things are much more difficult to fight off, should you come down with something. A common cold could easily turn very serious for someone whose immune system is basically being wiped out. But, it's better in my case to have no immune system at all than to have one that's trying to kill me from the inside out. With this new high dose of steroids comes a whole new world of germ-consciousness. He put me on some precautionary anti viral medications to avoid any chance of another case of CMV infection and it was also recommended that I consider wearing a mask when in public places. I've never been one to comply with that "rule" but perhaps it's time.
Third and final infusion!
I finished up my third and final infusion and said goodbye to the transplant floor for what I hope to be a very long time. They sent me on my way with steroids in the pill form which I will continue to take but in a much lower dose. They will slowly taper me off those pills as my labs improve and as they feel it's safe to remove this particular drug from my regimen. In my opinion, that can't happen fast enough!
In the rain, we dashed off to Centennial Park where I proudly walked with my wonderful support group, Girls with Guts. As a whole, I believe the event raised over $70,000 which will go directly to funding research to hopefully find a cure for crohn's, colitis and IBD in general. Because my liver has been on the forefront so much lately, many people forget that my autoimmune disease actually began with Crohn's. Many also do not realize that my Crohn's became life threatening and in July of 2013 I underwent major surgery at Vanderbilt to remove my entire large intestine, leaving me with an ileostomy. I found this wonderful and amazing group of girls and women who call themselves Girls with Guts that offer me support, encouragement and simply remind me that I'm not alone in this fight and in this lifestyle of living with an ileostomy. I drive to Nashville monthly to be a part of the meetings because they are life-giving to me. I need these girls and I need their familiar stories. Nobody can identify with me quite like they can and there's something very special about that. So, with that being said, a little rain and a little liver failure was NOT about to stop this girl from participating in this special event with my people.
See that guy in the middle? That's Dr. Schwartz and he's our hero in a white coat who takes such good care of all of us. We are just a small sampling of his adoring fan club. He is simply the BEST doctor around and we are so thankful for the way he cares for his patients.
A little rain couldn't stop us from walking out our passion!
We are stronger than we look!
Whether it's promoting organ donation awareness or walking for a cure for Crohn's disease, I love that he supports me in all of my efforts and passions.
Some of my favorite girls in the world!
I have so much love, respect and admiration for this sweet friend. She makes balancing serious health issues, Vandy medical school and life in general look so easy. She's going to make the BEST doctor in a few years! Love my Jess!
This is a picture of Team Vanderbilt on the morning of the walk. I love that so many of our own doctors, nurses and staff came out to support the CCFA in this event. Just another reason I adore Vandy!
After the walk, we were ready for some lunch so we tried out another local favorite that was recommended by one of my nurses on the transplant floor called Local Taco. Very yummy and we will definitely be back there as well!
I really wanted to take in some more of Nashville's sights but I was starting to feel myself get really run down and I knew we had tickets to the Opry that night so we retreated back to our hotel for a short rest before dinner and a night at the Grand Ole Opry.
This is what blissfully TIRED looks like.
Dinner at another new favorite, Mission BBQ. Yes, we seem to gravitate towards the BBQ joints! True southerners I suppose.
This was our third time at the Opry but this time was extra special because one of our favorite Christian bands, Big Daddy Weave, was making their debut appearance that night. It was great to see some familiar faces on that stage and as always, their songs brought me to tears.
One of my favorite parts of the Opry is the square dancing. Y'all probably didn't know I used to be part of a clogging group, did ya? I sure do miss it and seeing this makes me wish I could get back into it.
I was also pleasantly surprised to see one of the characters from my favorite TV show, Nashville, performing live that night.
Chris Carmack
Look at this fun little ditty I saw in the announcements section of the program! Check out the third one down, submitted by Rachel Dodson...How cool!!
After the show I found myself craving something sweet so we once again made a late night run by Publix where we each picked out a sweet treat. Cheesecake was my choice! I rarely crave these kinds of things but when I do I typically give in and indulge. So worth it!
I felt pretty good that night with the exception of a few of the side effects that started creeping in. Mostly the body aches and the restlessness and the intense HUNGER. I felt like I could chew my own arm off at times! I also noticed an increase in my craving for water which is highly unusual for me. I'm a Diet Coke and soda kind of girl and rarely drink water even though I know I should. However, I found myself absolutely craving ice cold water, even getting up in the middle of the night for sips because my mouth was parched and dry. I found out the next day via e-mail from my nurse practitioner that my kidneys were pretty angry with me as a result of all the infusions and increases in anti-rejection meds. Those meds are so harsh on your kidneys so you essentially trade one set of problems for another, as I've said many times before. She told me to pound the water in order to keep my kidneys happy and in order to keep me OUT of the hospital. A kidney injury alone is grounds for them tossing me back in and I do NOT want that. So, it was water water water the rest of the weekend.
Sunday morning we wandered back to an old favorite for lunch, Mellow Mushroom. It's one of my favorite restaurants in all of Nashville, partially because I couldn't seem to get enough of it when I was living there temporarily after transplant. I craved it and my Mom would drive me down there and let me indulge until if felt as though the 33 staples across my swollen belly were going to burst wide open. Nothing else ever sounded as appealing as a pizza from Mellow Mushroom. So, we had that for lunch before finding our way down to Broadway to take in a few of the sights and sounds before our tour began.
We strolled all the way down Boradway just so we could say we did and that was enough for me. Even on a Sunday afternoon it was more than I could handle. There were too many people, too much garbage, way too much alcohol and I just felt uneasy. Definitely not my idea of a good time but at least now I can say we've done it. We stopped into several bars to sit and listen to the live music and even treated ourselves to dessert at one.
The original home of the Opry, the Ryman Auditorium
The only part of Broadway that I enjoyed....
Printer's Alley
At 2:00 our golf cart tour with Patrick of Joyride began. He picked us up on Broadway and took us on the most amazing tour of downtown, showing us both history as well as pop culture. I saw parts of Nashville that I never even knew existed and he had all the interesting facts to go along with every place he showed us. It was well worth the money and I would highly recommend this over a bus tour or a carriage tour. He got us up close and personal to places we would probably only see from a distance if we had been on anything but this zippy little street legal golf cart! So fun!
On the set of my favorite show, Nashville. This is Highway 65 Recording studio, which is home to character Rayna Jaymes. This building temporarily sits unused but we were able to peek inside the windows and see parts of the set still in tact! My favorite part of the whole day!
We found Jackson!
That's us!
Need this!!
Music row was fascinating to me. This is where all of the big name record labels for country music's most well known artists reside. This is where some serious business goes down.
Union Station
Wanted to go here, but ran out of time and energy. Next trip for sure!
It was REALLY hot and I was REALLY worn out by the time all that sight seeing was over so we headed west to Jackson and wrapped up our weekend. When I came home I was pleasantly surprised to find lots of sweet and thoughtful goodies from my friends and family who had been thinking of me and praying for me. I don't know what I would do without such sweet and caring people in my life. There were lots of cards that I didn't get a picture of, but I have hung each one on a bulletin board in my pantry that I call my "wall of love" and I see them each time I walk into that room---which is pretty often thanks to my raging appetite!!! Ugh.
Sweet flowers from my prayer group
She knows the way to my heart is through cupcakes from my favorite local bake shop, Woodstock. She also knows that my favorite cupcake is the white rabbit, so she included one in the box. So thoughtful and so creative!!
Gavin even made a picture for Kyndall. Sweeeeeeet!
My Jules hand delivered flowers, a balloon and a sweet card earlier in the week. I was happy to see my pretty pink flowers soaking up the sunshine when I returned home after a weekend away.
Kyndall is pretty much oblivious to all that's been going on. She's been so consumed with swimming, playing with her cousin and attending Vacation Bible School that she has hardly even missed being here with me. I wouldn't want it any other way. I've been using these past few days to do NOTHING but rest, which is very hard for me. But with Matthew out of town (again) and Kyndall in Florida, there is really nothing else for me to focus on but resting and feeling better.
A few of my favorite pictures from Kyndall's many adventures with her Grandparents while in Florida and Georgia....
Lots of sweet cousin time
Breakfast dates with G-Daddy to the Waffle House
Finding old treasures that once belonged to her mama, like this purse and toothfairy pillow that Grammy has now handed down to her from my hope chest.
An Icee and a warm salted pretzel from Sam's will win her over every time
And of course lots of good sleep!
This past Monday night my prayer group gathered in my home for a time of much needed fellowship, FOOD, laughter and of course sweet time spent in the Word. There is nothing that refreshes my soul like time spent with these ladies pouring our hearts out and sharing our needs. These ladies are the real deal. They bring the good, the bad, the ugly and the raw and together we take on one another's burdens and bring our most sincere prayers before God. They even agreed to show up in their PJs and comfy clothes upon my request because that's how very real and genuine they are. I love these sisters and don't know what I'd do without them.
My Mom will bring Kyndall back to Jackson this weekend and she will stay through the following week because once again Matthew must be out of town for work. I'm probably fine to be left alone with her, but if she's going to make the 10 hour drive anyway, she might as well stay around for a while. I always love having her here so I'm looking forward not only to getting Kyndall back but also to spending some time with my Mom. I didn't really get to do that the week following the dance recital when she and my sister were here because I was feeling so awful.
I had labs drawn today and those results will give my team a good indication of whether or not the steroids are adequately fighting off this rejection. I feel very confident that things will look better because although I feel worse in some ways, the liver symptoms seem to be improving. With each new improvement in labs, they will slowly begin to taper me off the steroids until my body no longer needs them. I pray that this is a fast and easy process so that I can soon return to life as I knew it a month ago.
How do you start your mornings off?
Thank you for each and every act of kindness and love that was shown to me and my family over the past couple of weeks. From the cards and texts and gifts and visits and flowers and Facebook posts and meals and PRAYERS and offers to help in any way needed.....I am overwhelmed in the best possible way. I can't imagine walking through something like this without such support. THANK YOU for caring about me and my family and for being the hands and feet of Jesus to us in our time of need.
How could I come home and tell this sweet face I was going to miss her long awaited performance? I couldn't. Looking back at this picture I realize how very sick I was. I look awful.
I called first thing the next morning and told them of my plans. The nurse was less than understanding but she agreed to try and get me back in as soon as possible for the scan. I took Kyndall to her kindergarten testing that morning (something else that was important to me) and then we enjoyed the rest of the day with my Mom, sister and nephew before getting Kyndall all dressed up for her big piano performance. I felt like death and probably looked like it too, but nothing made me prouder than being there to see her play the piano for those short 5 minutes.
There may have been a nasty war raging inside of my body that night, but my heart was overflowing with joy and there was nowhere else I would have been but right there with my family. These are the moments that make it all worth fighting for.
The nurse called back at some point and said they couldn't see me until the following Tuesday for the MRCP scan. Keep in mind, this wasn't even an appointment to "fix" anything, but merely still an attempt to figure out the problem. I was pretty upset that I had to wait an entire five days before they could even work me in, but I was willing to take that penalty since I chose the recital over the previous available appointment. Over the next five days I began to feel worse and worse. It got to the point where the itching was so intense at night that I couldn't even get more than an hour or two of sleep. This on top of the fatigue from a malfunctioning liver just compounded my symptoms and left me weak and miserable. I was nauseous, had no appetite and even dropped several pounds simply from not eating. My eyes were getting more yellow by the day and my labs continued to fluctuate. But, all I could do was wait it out until the scan was done.
My Mom and sister left on Saturday the 28th and took Kyndall back to Tallahassee with them. That was Memorial Day weekend and originally they had planned to stay through Monday but with me not feeling good there wasn't much fun to be had up here so they decided to leave a little earlier than planned which also gave me some time just to rest and do nothing as I continued to wait. The good thing is we had been planning for Kyndall to go back with them to Tallahassee all along. My Mom asked me earlier in the year if they could have Kyndall for two weeks during this time so that she could attend their church's Vacation Bible School and be there for a few other fun activities they had planned. So this was actually great timing because Kyndall didn't feel as if she was being shipped off once again due to Mommy's sickness. She was essentially going on a vacation that she had already been looking forward to. Silver linings.....they're there if you just look for them!
Soaking up some last minute love on my last night with Kyndall before she headed back to my parents' house in Tallahassee. This is the best medicine I've found!
In the midst of all of this, Matthew was schedule to be traveling a lot for work. Although I was more than capable to taking care of myself, my sweet friend Jennifer who lives in Houston asked if she could fly out here and help take me to my upcoming appointments at Vanderbilt. Of course I said "no way" but she insisted. You see, Jennifer is the friend I met last spring when she and her husband Craig temporarily moved to Nashville while he waited for a liver transplant. Through a series of twists and turns that can only be described as a "God thing", I met Jennifer and Craig and befriended them on the transplant floor at Vandy. Craig ended up needing two liver transplants back to back and then ended up not surviving the second one. Jennifer left Nashville on July 4th of last year to return home to Houston without her beloved husband. Over the past year I have remained in very close contact with Jennifer, making a trip to Houston for Craig's funeral as well as a return visit with Matthew and Kyndall this pat October. Our friendship feels like one that I've known forever and I am so thankful that our paths crossed when and where they did last Spring.
Jennifer has been feeling the urge to return to Nashville and specifically to Vanderbilt for some time in order to gain some closure from Craig's untimely and unexpected passing. When she found out I wasn't doing well, she said she knew she needed to come. As much as I tried to talk her out of it, there was no changing her mind. So, on Memorial Day she flew into Memphis where Matthew and I greeted her and brought her to our home in Jackson. Seeing her in person did my heart such good.
Reunited and so happy about it!
Having been a care taker for Craig, Jennifer knows all too well how crummy a person feels when their liver is acting up. So she was more than willing to help in any way needed while she was here. I am not one to ask for or accept help very graciously, but when I woke up on Tuesday at 5:30 in the morning for my MRCP scan I knew I wouldn't be able to drive myself all the way to Nashville. The nausea was beyond belief and my head was pounding. Jennifer never hesitated to jump in my driver's seat and navigate her way from Jackson to Nashville. Having her here for this was such a blessing because it allowed Matthew not to have to miss work in order to drive me over.
I had labs first thing Tuesday morning, followed by my long awaited MRCP scan of the liver. I was so anxious to get this scan done because I was confident it would be the determining factor in showing us there was a clear, obvious blockage in the bile ducts. They got my IV started, put me in a gown, had me drink some awful juice, and then they began the scan.
Within an hour of finishing the scan, my transplant nurse practitioner called me and said they had the results. Unfortunately, there was no blockage to be found. So this meant one thing and one thing only. REJECTION. I started crying over the phone as she gave me the news. She and my doctor seemed to be as shocked as I was at these strange findings. However, there was no time to ask questions because now that we knew what the problem was, it was time to proceed with the next step. The next step was an ultrasound guided needle biopsy. I've had many of these done over the years and although they're not quite as awful as they sound, I typically have a little more time to mentally and emotionally prepare myself for the procedure. Not this time! She told me to get straight down to the endoscopy lab because my doctor was working me in ASAP. I was so relieved that my own hepatologist was going to do the biopsy, rather than some radiologist that I don't even know. There's something to be said for the level of comfort and trust that comes along with familiarity in these situations. Dr. Scanga is so good to me and just knowing he would be the one standing there with me during the procedure gave me great peace.
By the middle of the afternoon I was being rolled into the endoscopy lab where Dr. Scanga carefully carried out the process of performing a needle biopsy. As I said, I've had these done several times before but they're a little nerve wracking since they are done without sedation. He agreed to give me a tiny bit of versed to relax me, but it's nothing like my beloved propofol that I love so much! Ha! I was awake for all of it and remember everything which is strange since typically I have no recollection of any of my medical procedures. He had me twist and contort my body in a way that would push my liver outward, and a bit to the right. He actually saw the scar on my rib cage where he performed the last biopsy and decided to use that as his entry point. An ultrasound is used to make sure that he is essentially aiming the needle in the correct direction as to not hit any other major organs and also to carefully navigate between ribs. He told me to take a deep breath in and then he shot the needle into my side.
It was over as quickly as it began and before I knew it he was holding up a tiny clear jar with a small sample of my liver it for me to see. It resembled a long and skinny spaghetti noodle, except it was a brownish color. It was fascinating to see!
I was taken into recovery where I would have to lay on my right side for nearly two hours in order to avoid any internal bleeding. They brought Jennifer back into recovery to keep me company and together we shared some of the best belly laughs thanks in part to my somewhat loopy state as the versed was slowly leaving my system. It was strange not having Matthew or my Mom there with me, but Jennifer's presence was exactly what I needed. She was a constant, visible reminder to be thankful and grateful in the midst of feelings of frustrations and questions of "why me....why again?" I wouldn't have wanted anyone else with me that day. I think it was also therapeutic for her to be back in the place where she last said goodbye to Craig, but now with new memories to fill her mind.
Dr. Scanga came in once I was in a better state of mind and explained that pathology would be reading the biopsy results ASAP and that I'd be hearing from him or his nurse the next morning with plans of how to proceed.
Jennifer and I left the hospital around 6:30 and enjoyed a nice patio dinner in downtown Nashville before heading back to Jackson. Again, she drove me home since I was legally not allowed to drive myself after being given the versed. We laughed and cried all the way home before crashing for the night.
As promised, I received a call from my NP, Katie, the very next morning. Her news was once again not what I wanted to hear. She told me that I needed to begin heavy doses IV infusions of steroids as soon as possible in order to get this rejection under control quickly. If you've followed my transplant journey or you have a health journey of your own, then you probably already know all of the reasons why this news was devastating to me. To me, taking prednisone feels like pumping poison straight into my body. And slamming my system with it IV style is even worse. There are not enough words to adequately depict the amount of hatred I have for this necessary evil of a drug. It is satan in the form of medication. Pure evil packed into a tiny white pill. But, it's the only sure way to stop this ravenous and out of control immune system of mine. It has to be done. There's really no choice. Every time I've been in rejection this is the method of choice and every single time I cry and throw a fit and tell them I'm never doing this again.
This time was no exception. I cried....hung up the phone and threw a fit in the living room in front of Jennifer and Matthew and then told them I wasn't doing it. I told them it was MY body and MY choice and I was choosing not to take the treatment. I'm the one who has to live with all of the side effects and I'm the one who has to live a life of misery as it trashes my body. They both sat quietly watching as I stomped and cried and yelled and poured my heart out. Then, in her sweet, soft, gentle voice, Jennifer gently reminded me that Craig would do anything to be here, including agreeing to take a medication that would ultimately save his life. She went on to give me the most beautiful, loving guilt trip I've ever had in my entire life. Suddenly I realized how very childish I was acting and I was embarrassed and ashamed that I ever took it that far. How selfish I must have sounded. How utterly ungrateful I must have seemed. How she must have wanted to shake me and tell me that she'd do ANYTHING to have her husband back and yet I was mad because I had to suffer through some crappy side effects from a medication that would ultimately allow me to continue to live.
It wasn't until that moment that I realized there really was no choice in this matter. I called the nurse back and scheduled my infusions right away. They would begin the very next morning (Thursday) and I would need one Friday and Saturday mornings as well. It was the very same process I went through the last time this happened, only this time they weren't admitting me to the hospital which was a blessing in itself. I'd much rather drive back and forth three days in a row than to be stuck IN the hospital.
Shortly after I called the nurse back and got my three infusions scheduled, it was nearly time for Matthew to fly out to Dallas for his meeting. Jennifer would stay behind with me and take me to my first infusion the next morning, before flying back to Texas herself.
Matthew took us to lunch before he left, which was a good distraction from all that I had been feeling that morning. Jennifer and I spent the rest of that rainy afternoon on the couch relaxing together in our PJs. I felt like it was the last calm before the storm because I knew the next morning was going to be tough as I forced myself to begin the infusions. Having Jennifer here was such good medicine for my soul. There were SO many times I wanted to throw another fit or have myself another good cry but having her here as a physical reminder of all my many blessings kept me from slipping back into that awful mindset and allowing those ugly emotions to come out once again.
Thursday morning came EARLY as Jennifer and I woke up at 3:45 in order to be at Vanderbilt by 8:30 to begin my first infusion of steroids. I knew the infusions had to be done on the 7th floor, which is the transplant floor. I worried this would be hard for Jennifer since this is where she spent so much of her time during her last days with Craig. I tried to get her to stay downstairs but she insisted on going up with me. In typical Jennifer fashion, she handled it like a champ. That's not to say there weren't a few tears, but she held it together far better than I could have. That's saying a lot considering we were put in a room that was directly across the hall from the room where Craig was a patient.
Even as I sat waiting for the nurses to get my orders put in the the system and to start my IV, I contemplated getting up and walking out. I even said out loud to Jennifer...."If this isn't started in 10 minutes, I'm leaving."
Of course that didn't happen. The IV was placed and the medication began making its way into my body. I cried silent tears as I watched it flow into my veins, knowing that while it was saving my life, it was ultimately trashing my body from within and I knew it would only be a matter of time before I began to feel the awful side effects. A necessary evil in every sense of the word.
The infusion itself only took about 40 minutes. During that time, Jennifer's sister Casie came up to keep us company and to visit. Like Jennifer, Casie also lives in Texas but she happened to be vacationing in Nashville this very same week. She hadn't been back to Vanderbilt since Craig's passing either. Together, Casie and Jennifer kept me laughing and entertained and distracted while I received my treatment. I needed that laughter and that time with my sweet friends. Again, the timing couldn't have been better with Casie being in town....another silver lining.
These two kept a smile on my face throughout my entire appointment
Back where our friendship first began, almost exactly one year to the day! God's plans and His timing blow my mind sometimes. This time last year I barely knew this sweet soul and now here she was taking care of me in my own time of need. He's such a God of details!
The 7th floor will likely never be the same again! Ha!
A Texas sized squeeze!
When my infusion was complete, it was time to say goodbye to Jennifer. She was on her way back to Houston and I was on my way back to Jackson to rest up before returning the next morning for my second infusion. I hated to see her go but I was SO thankful for my time with her. I truly believe God urged her to come here in order to serve as a much needed wake up call for my selfish and ungrateful heart.
I came home and crashed Thursday night and waited for Matthew to arrive back home from his quick trip to Dallas. We packed our bags for the weekend and headed to Nashvhille on Friday morning for my second infusion. Once again, the timing worked out pretty well because several months ago we had already planned to spend that entire weekend in Nashville. I was committed to an event with the Crohn's and Colitis Foundation of America on Saturday morning and it was also meant to be a belated anniversary trip for us since Kyndall was away and we didn't really do much to celebrate back in April. So with two more infusions needed on Friday and Saturday mornings, we simply worked those into our weekend and made the best of it despite the fact that I wasn't exactly feeling 100%. We had tickets to the Opry and I had booked a tour of Nashville so knowing we had those things to look forward to made the infusions not seem so bad. Plus, I was really excited about my Crohn's and Colitis event with my Girls with Guts support group. There were more than enough silver linings to get me through those last two dreaded appointments.
Friday morning we woke up once again at 3:45 in order to be in Nashville by 8:30. This time when we arrived, they didn't have enough space for me in the infusion room so they put me in a regular patient room which was actually a treat. (Although, I did look over at Matthew once and tell him this felt a little too eerily familiar and may have been bringing up some feelings of PTSD!) It was nice to have a bed to sit in and a chair for Matthew to stretch out in while we waited for the infusion to be complete. Plus, I saw LOTS of familiar faces walk by as the transplant team did their "big rounds" on Friday morning. It was such a great feeling being remembered by all of these amazing people who took such great care of me not too long ago. It really says something about Vanderbilt when you are remembered and recognized and greeted with a hug and a smile. In a weird sort of way, going back to the transplant floor always feels a little bit like coming home to me. There is something very bittersweet about that place. So many memories held within those walls....both good and bad. It's where my miracle took place and those are the miracle workers who helped make it all happen for me. It thrilled my heart to have this little mini reunion on Friday morning and once again was a great distraction from the infusion itself. No tears or threats of running away took place Saturday morning so I call that a success!
I was in such a fog getting dressed early that morning that I didn't even realize the irony of the shirt I put on. "Grace" the liver was well represented that day!
Back where it all began and jumping right into his role as a caretaker and nurse, never uttering a single complaint. What would I do without him? I'm so thankful that long before sickness and surgeries and hospital stays and chronic illness and a life riddled with medical ups and downs God knew that I would need this man in a BIG way. He's my one constant in a world of so many unknowns.
However, he is human and he is a male so it didn't take long for me to look over and find THIS. I suppose he earned it.
Felt pretty familiar!
In goes the poison....
Next on my agenda was a stop at Opry Mills for new Vera Bradley goodies. I wanted to get Kyndall a new backpack and lunchbox for kindergarten and of course I needed something for myself as well! My sweet husband served as a great pack mule as I walked around the store tossing things his way.
Found this cute umbrella at the VB outlet too!
By mid-afternoon my fatigue was starting to settle in and so was the rain. So we made our way back to the hotel where we indulged in a rare treat that few will understand. PUBLIX SUBS. We are sorely deprived of the goodness of Publix here in Jackson and we often find ourselves craving one of their delicious sandwiches. There was a Publix next to our hotel and we were both down for a simple dinner so we dined fancy style in the hotel room with our sandwiches and chips that evening! Lame? Maybe. But it hit the spot!
Saturday morning was chaotic to say the least. I was scheduled for my very last infusion that morning but I also needed to be in downtown Nashville in Centennial Park for the Crohn's and Colitis Foundation fundraiser walk by 9:30-ish. I knew I needed to show up at the hospital as early as possible to get this infusion going, get my IV permanently removed, have my labs drawn one last time and book it over to the park. I was in charge of our team's matching t-shirts and I needed to be there in order to pass them out to everyone. Thankfully I was able to call the transplant floor on my way to the hospital and let them know I would be walking in the door any minute. They worked quickly to get my infusions done as fast as possible and get me on my way.
Since it was Saturday morning, I really didn't expect to see any familiar faces on the floor. However, it just so happened that Dr. Scanga was on service that day so he popped in and said hello to me and Matthew as he was doing morning rounds. He told us he's really never seen an immune system that operates quite like mine. Despite being on higher than therapeutic levels of anti-rejection medications and lots of immunosuppressing drugs, my system still managed to break through and cause a rejection. My immune system is a beast and a force to be reckoned with. It will likely be a lifelong battle against my own immunity to keep me healthy and out of a state of rejection. The down side to this is that when your immune system is compromised, you are at a much higher risk for infection from germs and things are much more difficult to fight off, should you come down with something. A common cold could easily turn very serious for someone whose immune system is basically being wiped out. But, it's better in my case to have no immune system at all than to have one that's trying to kill me from the inside out. With this new high dose of steroids comes a whole new world of germ-consciousness. He put me on some precautionary anti viral medications to avoid any chance of another case of CMV infection and it was also recommended that I consider wearing a mask when in public places. I've never been one to comply with that "rule" but perhaps it's time.
Third and final infusion!
How great is my husband?! Wearing a pink and purple shirt that says "Girls with Guts" on it just to show his support for me and my team. Love him.
I finished up my third and final infusion and said goodbye to the transplant floor for what I hope to be a very long time. They sent me on my way with steroids in the pill form which I will continue to take but in a much lower dose. They will slowly taper me off those pills as my labs improve and as they feel it's safe to remove this particular drug from my regimen. In my opinion, that can't happen fast enough!
In the rain, we dashed off to Centennial Park where I proudly walked with my wonderful support group, Girls with Guts. As a whole, I believe the event raised over $70,000 which will go directly to funding research to hopefully find a cure for crohn's, colitis and IBD in general. Because my liver has been on the forefront so much lately, many people forget that my autoimmune disease actually began with Crohn's. Many also do not realize that my Crohn's became life threatening and in July of 2013 I underwent major surgery at Vanderbilt to remove my entire large intestine, leaving me with an ileostomy. I found this wonderful and amazing group of girls and women who call themselves Girls with Guts that offer me support, encouragement and simply remind me that I'm not alone in this fight and in this lifestyle of living with an ileostomy. I drive to Nashville monthly to be a part of the meetings because they are life-giving to me. I need these girls and I need their familiar stories. Nobody can identify with me quite like they can and there's something very special about that. So, with that being said, a little rain and a little liver failure was NOT about to stop this girl from participating in this special event with my people.
See that guy in the middle? That's Dr. Schwartz and he's our hero in a white coat who takes such good care of all of us. We are just a small sampling of his adoring fan club. He is simply the BEST doctor around and we are so thankful for the way he cares for his patients.
A little rain couldn't stop us from walking out our passion!
Team Girls with Guts (minus a few who darted when the rain began)
We are stronger than we look!
Whether it's promoting organ donation awareness or walking for a cure for Crohn's disease, I love that he supports me in all of my efforts and passions.
Some of my favorite girls in the world!
I have so much love, respect and admiration for this sweet friend. She makes balancing serious health issues, Vandy medical school and life in general look so easy. She's going to make the BEST doctor in a few years! Love my Jess!
This is a picture of Team Vanderbilt on the morning of the walk. I love that so many of our own doctors, nurses and staff came out to support the CCFA in this event. Just another reason I adore Vandy!
I really wanted to take in some more of Nashville's sights but I was starting to feel myself get really run down and I knew we had tickets to the Opry that night so we retreated back to our hotel for a short rest before dinner and a night at the Grand Ole Opry.
This is what blissfully TIRED looks like.
On our way out for the evening. I took this picture for especially for Jennifer because during her time here she taught me how to properly pose, complete with a hip pop and a head tilt. Still working on the head tilt but I think I'm getting it. Ha!
This was our third time at the Opry but this time was extra special because one of our favorite Christian bands, Big Daddy Weave, was making their debut appearance that night. It was great to see some familiar faces on that stage and as always, their songs brought me to tears.
One of my favorite parts of the Opry is the square dancing. Y'all probably didn't know I used to be part of a clogging group, did ya? I sure do miss it and seeing this makes me wish I could get back into it.
I was also pleasantly surprised to see one of the characters from my favorite TV show, Nashville, performing live that night.
Chris Carmack
Look at this fun little ditty I saw in the announcements section of the program! Check out the third one down, submitted by Rachel Dodson...How cool!!
After the show I found myself craving something sweet so we once again made a late night run by Publix where we each picked out a sweet treat. Cheesecake was my choice! I rarely crave these kinds of things but when I do I typically give in and indulge. So worth it!
I felt pretty good that night with the exception of a few of the side effects that started creeping in. Mostly the body aches and the restlessness and the intense HUNGER. I felt like I could chew my own arm off at times! I also noticed an increase in my craving for water which is highly unusual for me. I'm a Diet Coke and soda kind of girl and rarely drink water even though I know I should. However, I found myself absolutely craving ice cold water, even getting up in the middle of the night for sips because my mouth was parched and dry. I found out the next day via e-mail from my nurse practitioner that my kidneys were pretty angry with me as a result of all the infusions and increases in anti-rejection meds. Those meds are so harsh on your kidneys so you essentially trade one set of problems for another, as I've said many times before. She told me to pound the water in order to keep my kidneys happy and in order to keep me OUT of the hospital. A kidney injury alone is grounds for them tossing me back in and I do NOT want that. So, it was water water water the rest of the weekend.
Sunday morning we wandered back to an old favorite for lunch, Mellow Mushroom. It's one of my favorite restaurants in all of Nashville, partially because I couldn't seem to get enough of it when I was living there temporarily after transplant. I craved it and my Mom would drive me down there and let me indulge until if felt as though the 33 staples across my swollen belly were going to burst wide open. Nothing else ever sounded as appealing as a pizza from Mellow Mushroom. So, we had that for lunch before finding our way down to Broadway to take in a few of the sights and sounds before our tour began.
The original home of the Opry, the Ryman Auditorium
The infamous lower Broadway. I can almost smell the garbage and alcohol through this photo.
The only part of Broadway that I enjoyed....
Listening to the band play at Rippy's while people watching was fun
Printer's Alley
At 2:00 our golf cart tour with Patrick of Joyride began. He picked us up on Broadway and took us on the most amazing tour of downtown, showing us both history as well as pop culture. I saw parts of Nashville that I never even knew existed and he had all the interesting facts to go along with every place he showed us. It was well worth the money and I would highly recommend this over a bus tour or a carriage tour. He got us up close and personal to places we would probably only see from a distance if we had been on anything but this zippy little street legal golf cart! So fun!
On the set of my favorite show, Nashville. This is Highway 65 Recording studio, which is home to character Rayna Jaymes. This building temporarily sits unused but we were able to peek inside the windows and see parts of the set still in tact! My favorite part of the whole day!
We found Jackson!
And even our sweet little town of Medina!
I somehow seem to forget that Nashville is also our state capitol
That's us!
Marathon Village, home of the show American Pickers and lots of other neat little quaint shops and restaurants
Need this!!
Music row was fascinating to me. This is where all of the big name record labels for country music's most well known artists reside. This is where some serious business goes down.
This is Big Machine Label Group, home to the biggest names in country music such as Taylor Swift, Tim McGraw, Rascal Flatts, Reba, Zac Brown Band, Garth Brooks, Steven Tyler and many more. It's amazing to me that behind those doors bazillions of dollars are made and spent all in the name of making music!
Union Station
Wanted to go here, but ran out of time and energy. Next trip for sure!
It was REALLY hot and I was REALLY worn out by the time all that sight seeing was over so we headed west to Jackson and wrapped up our weekend. When I came home I was pleasantly surprised to find lots of sweet and thoughtful goodies from my friends and family who had been thinking of me and praying for me. I don't know what I would do without such sweet and caring people in my life. There were lots of cards that I didn't get a picture of, but I have hung each one on a bulletin board in my pantry that I call my "wall of love" and I see them each time I walk into that room---which is pretty often thanks to my raging appetite!!! Ugh.
Sweet flowers from my prayer group
A surprise note left by Jennifer on the side of my fridge--sneaky!
A special delivery from three very dear friends of mine who have made it a tradition to send me a new angel each time I'm sick or placed in the hospital. I've got quite a collection going thanks to them. That's not saying much for my track record, but I do love collecting them and knowing the special meaning behind each one.
My sweet Lauren left this on my front porch.....
She knows the way to my heart is through cupcakes from my favorite local bake shop, Woodstock. She also knows that my favorite cupcake is the white rabbit, so she included one in the box. So thoughtful and so creative!!
Gavin even made a picture for Kyndall. Sweeeeeeet!
My Jules hand delivered flowers, a balloon and a sweet card earlier in the week. I was happy to see my pretty pink flowers soaking up the sunshine when I returned home after a weekend away.
A few of my favorite pictures from Kyndall's many adventures with her Grandparents while in Florida and Georgia....
Lots of sweet cousin time
Picnics by the pool
Breakfast dates with G-Daddy to the Waffle House
Lots and lots of crafting--her favorite!
Outings and lunch dates with Grammy
More cousin fun
A trip to Wild Adventures with Nonie
Finding old treasures that once belonged to her mama, like this purse and toothfairy pillow that Grammy has now handed down to her from my hope chest.
An Icee and a warm salted pretzel from Sam's will win her over every time
Treats from Lifeway
TONS of fun at Vacation Bible School!
More cousin time
And of course lots of good sleep!
As you can see, she's not been missing me too much! I'm so thankful that in the midst of all that's going on back here she is being so loved and well taken care of. I'm ready to see her but I'm not sure she's ready to come home. She told me today she wanted to stay at Grammy and G-Daddy's house!
This past Monday night my prayer group gathered in my home for a time of much needed fellowship, FOOD, laughter and of course sweet time spent in the Word. There is nothing that refreshes my soul like time spent with these ladies pouring our hearts out and sharing our needs. These ladies are the real deal. They bring the good, the bad, the ugly and the raw and together we take on one another's burdens and bring our most sincere prayers before God. They even agreed to show up in their PJs and comfy clothes upon my request because that's how very real and genuine they are. I love these sisters and don't know what I'd do without them.
My Mom will bring Kyndall back to Jackson this weekend and she will stay through the following week because once again Matthew must be out of town for work. I'm probably fine to be left alone with her, but if she's going to make the 10 hour drive anyway, she might as well stay around for a while. I always love having her here so I'm looking forward not only to getting Kyndall back but also to spending some time with my Mom. I didn't really get to do that the week following the dance recital when she and my sister were here because I was feeling so awful.
I had labs drawn today and those results will give my team a good indication of whether or not the steroids are adequately fighting off this rejection. I feel very confident that things will look better because although I feel worse in some ways, the liver symptoms seem to be improving. With each new improvement in labs, they will slowly begin to taper me off the steroids until my body no longer needs them. I pray that this is a fast and easy process so that I can soon return to life as I knew it a month ago.
How do you start your mornings off?
Thank you for each and every act of kindness and love that was shown to me and my family over the past couple of weeks. From the cards and texts and gifts and visits and flowers and Facebook posts and meals and PRAYERS and offers to help in any way needed.....I am overwhelmed in the best possible way. I can't imagine walking through something like this without such support. THANK YOU for caring about me and my family and for being the hands and feet of Jesus to us in our time of need.
Thank you for sharing your amazing journey with us! When you did your tour, the Bicentennial Plaza where you were on the cart, is next door to where I work. To your right the Andrew Johnson building is where I am everyday! The teal colored bldg. I would like to do that tour as well!
ReplyDeleteYou are in our prayers! My small group at church is also praying for you!!
So sorry that you are going through all these health issues and praying for you each day. Glad your Mom will soon be with you and I know you will be glad to see her. I have wanted to come see you but since I don't know you well yet, I didn't know how much you would need someone while you are resting. I will be gone this coming week but I definitely want to come see you and see what I can do to help when I get home. Best wishes for a speedy recovery and may God bless your faithfulness!
ReplyDeleteGet to see Kendall every night as she comes through the Submerged Snack Shack. You are never far from our thoughts. I remember the first time my Madison met your mom. She'd been praying for you, without knowing you, for so long. So, when I was selling Kelly's house, Madison met Kelly and your mom. I said, "Madison, this is Ashleigh Ann's mom." Madison and your mom wept. Prayer is amazing and deep and moves mountains. We'll continue to pray. Thank you for sharing your journey of faith and the pitfalls that come. Hugs from Tallahassee.
ReplyDelete