A Long Overdue Update

Many of you have been asking for an update on my health for some time now, and I apologize for the delay.  I have been so overwhelmed (in the best way possible!!!) by all of the calls, texts and messages that I really didn't even know where to begin in regards to responding to them all.  As much as I would love to personally correspond with each of you, my lack of energy just won't allow for it.  So please accept my apology if this mass update seems impersonal, but it's truly the best way for me to let everyone know what''s going on.  I appreciate everyone's care and concern more than you could EVER know.  Your thoughts, prayers and sweet words of encouragement are such a blessing to me and I don't know how I would face this new phase of my life without such an overwhelming feeling of love and support.  THANK YOU!!

Now, where to begin??

I guess I should start by saying over the past 6 weeks or so, my health has significantly declined and I've taken a severe turn for the worse.  I have felt it physically, and if you've seen me lately, you know that it is also very noticeable in my appearance.  Even before the doctors confirmed this decline, I knew it simply because of how terrible I've felt.  It came on me so fast, and I went from feeling completely normal to completely awful in a matter of days.

First, I am fatigued beyond anything I've ever experienced, to the point that simply being awake is completely exhausting.  I have absolutely no energy and no matter how much I sleep, I still don't feel rested.  It's much more than just feeling tired or sleepy---It's a helpless feeling of wondering where I'm going to get the energy just to get myself out of bed and get ready for the day.  Even just getting a shower, putting on make up and doing my hair wipes me out for the rest of the day.  Not to mention taking care of a toddler, keeping up a house, cooking meals for my family, staying on top of errands, etc.  It's definitely one of the hardest parts of this whole process.  There are often times when Satan gets ahold of my mind and really makes me feel guilty for the areas I'm lacking in.  I struggle with feeling like an inadequate wife, mother and friend and for not being able to give 110% to those I love.  But then the Lord reminds me that for now, this is just a season in my life.  This too shall pass and someday (hopefully soon!) I will return to my old self and I will be able to be the wife and mother that I was created to be.  More than anything, my prayer is that this season will pass so quickly that Kyndall will have no memory of it.  In 20 years, when people tell Kyndall that her Mommy was once very very sick, she is shocked by this news and has absolutely no recollection of these times.  I don't want her childhood to be tainted with memories of illness or pain or suffering.  Matthew has done a great job of picking up the slack where I'm unable to fulfill my duties.  He's been ever so patient with me and has not complained or made me feel inadequate in any way.  I've said it before, but God definitely knew what He was doing when He gave Matthew to me!  I can't imagine walking through this with anyone else by my side.  He's been such a trooper!  

The second (and in my opinion WORST) physical manifestation of my failing liver is the intense itching.  Because my liver is unable to filter all of the toxins out of my body, there is a very high build up of billirubin and other bile acids circulating in my bloodstream.  This causes severe and debilitating itching from head to toe and everywhere in between.  At any given time I am usually bleeding somewhere on my body from scratching so much.  It's absolutely the worst form of torture you could ever imagine.  My doctor told me this week that patients who experience this often become suicidal because it is just so awful.  Of course, I am not at that point and hope to never be, but that just goes to show you how terrible it is.  It is all consuming at times and keeps me from being able to function.  Just the other night while my Mom was here, I was trying to cook dinner and the palms of my hands began to itch.  I couldn't even finish cooking because I couldn't stop scratching my hands.  Absolutely nothing helps.  My doctors have given me every type of medication available to try and get me some relief and nothing helps.  Also, it seems to get more intense at night.  This causes me to lay awake, miserable, for hours on end, when I should be resting and catching up on precious sleep.  So it's a vicious cycle that just perpetuates itself with no end in sight.  There have been many nights when I cried myself to sleep, just begging God to give me some form of relief from this torture.  I can handle being fatigued and I can handle the idea of a liver transplant and all of the risks that go along with it.  But the itching is just beyond anything I've ever experienced.  

The third (and most obvious) outward sign that things have gotten worse is the extreme jaundice.  Not only is my skin a nice shade of orange/yellow, but my eyes are also bright yellow, where they should be white.  People have really started noticing, particularly my eyes.  A few people have asked me if I've been laying in a tanning bed or if I've been to the beach and I just laugh and tell them "I wish!"  =)  I'm not entirely sure what people think about my eyes, but I can tell they notice it.  I mean, how can you not??  Typically if I feel like they're curious, I just go ahead and break the ice by explaining it to them, rather than letting them make false assumptions.  Kyndall recently noticed them for the first time, which I knew would happen at some point.  She looked up at me, as serious as could be and said "Mommy.....your eyes are lellow (yellow).  You been eatin' honey mustard?"  I couldn't help but laugh!  I explained to her that Mommy is sick and the germs in my body make my eyes look yellow, but that once I'm better they will look white again.  She seemed satisfied with that answer and went on about her way.  Funny how kids notice things!

Here's a recent picture of my eyes......lovely, aren't they??

A few days before Christmas I met with my hepatologist and we had a long talk about the state of my liver.  He explained to me in very blunt terms that there was nothing more they could do for me and that I was now facing a liver transplant.  Although this didn't completely shock me, I was surprised by how quickly it all came on.  Just a few weeks prior I had been symptom free and feeling pretty good.  I've always known that due to my PSC, a liver transplant would most likely be in my future.  They told me that when I was first diagnosed 7 years ago.  However, I don't think anyone anticipated it being this soon or happening this swiftly.  

My doctor explained that I needed to give my consent for him to begin the process of listing me for a transplant.  I asked him if I could go home and talk to my family over the Christmas holidays and then get back to him in a couple of weeks.  Of course he said yes, so that's what I did.  It was during our trip home for Christmas that I really started feeling worse.  I knew for sure I was ready and actually ANXIOUS to begin this process.  That's how bad I was feeling.  Before I had a chance to e-mail my doctor, he contacted me and asked me if I had made a decision.  I told him that without a doubt, I was ready.  I am just so tired of feeling bad and so ready to feel like my old self again.  He told me he would get the process rolling and that he wanted to see me after I returned to Tennessee.

So this past Monday, January 13th, my Mom and I spent the entire day at Vanderbilt talking with my doctor and having a few preliminary tests done which are necessary prior to being listed.  I sat down with my doctor and his nurse and together we combed over every detail of what the next few weeks and months will entail.  

First, he told me that my current MELD score is a 21.  Basically, a MELD score is the way that they "rank" those awaiting a liver transplant and it's how they go about distributing the organs to those in need.  Your MELD score is calculated by certain levels in your blood work, such as billirubin and a few others.  The higher your MELD score, the greater your need for a liver and thus the higher you rank on the list.  Just a few weeks ago, my MELD score was a 15.  As of this past Monday, it had jumped to a 21.  That's a HUGE leap for such a short amount of time.  As scary as that is, it's almost comforting to me because it means I (hopefully) will not be like so many others who sit and wait in misery for years on end, simply because their score hasn't changed.  In the state of Tennessee, most individuals receive their transplant when their score reaches the low to mid 20's.  This can vary, due to many factors such as finding a match, etc.  However, Tennessee is a great place to live in terms of the balance of supply and demand when it comes to organ transplants.  In some states, such as California and New York, individuals often have a MELD score of 50 or higher before they are transplanted!  I cannot even imagine how awful they must feel if I'm feeling this bad at a 21.  But, sadly there are only so many organs to go around and in those areas the ratio is not very good.  

As I mentioned, receiving a liver also means finding a match for my body.  The donor would have to have my same blood type and would also have to be about my size.  My doctor told me Monday that this may prove to be the most difficult part of this whole process for me.  Because of my size, I cannot receive a liver from a person who is significantly larger than me.  It just won't work, for obvious reasons.  So, my donor would need to be a small adult, an adolescent, or even a child.  Uggggh.....don't even get me started on how I feel about THAT.  I can't even go there.  

Once I am officially listed, my blood will be checked regularly in order to keep my MELD score up to date.  As it goes up, so will my "ranking" on the list.  However, it's very possible that I could be #1 on the list but if the size and blood type are not a match, then I'm essentially stuck until something comes available.  At any given time, I will be able to check my ranking and see exactly where I fall on the list.  So, I should have at least some idea as to when the time is getting close.  

One of my biggest questions was about travel.  Obviously, I travel home to Tallahassee pretty often.  Sadly, I will no longer be able to do that.  When I get the call that an organ has come available, they absolutely will not wait on me if I'm 10 hours away in Florida.  In fact, they will not even wait for my family to arrive when I get the call.  Matthew and I will have to establish a game plan in the next few weeks of what we will do once it's time to head to the hospital.  We will need to have someone who can take Kyndall immediately, and keep her until our family can arrive.  If I do have to travel out of state for some reason, I must alert my transplant team ahead of time so that they do not waste time trying to track me down if an organ should come available in my absence.  They will simply skip over me and I will miss out.  YIKES.  I think I'll stay put for a while.  

Naturally, I had a lot of questions about the process itself.  My doctor explained that my organ will come from someone who is on life support who has no chance of making a recovery.  Once the doctors and the family choose to terminate, I will be notified and told to head towards Nashville.  There will be two surgeons on my team and once I arrive, one of them will travel to the donor and harvest the liver, while the other stays behind and preps my body for the transplant.  I didn't even think to ask how long the surgery will take, but I would imagine it to be pretty lengthy.  Survival rates average about 80% to 85% during surgery and into the first few months following surgery.  I'm not all that comfortable with those numbers, but it is what it is and I just try not to think about anything except how GOOD I'm gonna feel when this is all finally over with and behind me!  Besides, my God is bigger than ALL of this and He's got a plan that is beyond anything I could ever imagine.  Whatever that plan is, I rest in the knowledge that He has my best interest at heart and He also knows the desires of MY heart.  

Though I'm at somewhat of a disadvantage because of my size, I'm actually at at advantage due to the fact that besides my liver, I am generally very healthy.  I'm young and don't have any other major health problems to speak of.  This could prove to be beneficial in that if a liver comes available that might not be ideal or perfect, my body could accept it and "clean it up" and make it good as new.  One example he gave was of a fatty liver.  This may not work for someone who has additional health problems because it could potentially fail or cause extra strain on their body.  However, my body would most likely be able to accept the fatty liver, drop off the fat and make it work just fine.  If this situation presents itself, the doctors would call me and tell me what they have and I would then make the decision to accept the "less than ideal" liver, or pass it on to the next person.  Obviously, they would not even present this option to me if they didn't think I would have a high success rate.  So, I feel like most likely I will take whatever comes available first.  But, we will cross that bridge when we get there. 

Before I can officially become listed, I must go through a battery of tests and scans to make sure that there are no unknown underlying issues that may come up during surgery which could cause problems with the transplant.  While I was at Vanderbilt this past Monday, I had the first of these tests, which was an upper GI scope to look for varices which if present, could cause issues with bleeding during surgery and recovery.  Thankfully, everything checked out just fine and I am one step closer to being listed!  Over the next few weeks I will continue to have tests to rule out problems.  Once I'm given clearance, my doctor will present my case to the transplant board and they will then list me and rank me according to my MELD score.  Then, we wait and pray.  

Everyone's biggest question is how long I will have to wait before I receive my organ.  Unfortunately, nobody can give a definite answer for this.  Last year, Vanderbilt did about 180 liver transplants, which averages out to one every couple of days.  However, my doctor said that some weeks they do 5 a day and some weeks they don't do any.  There are just so many factors that contribute, so it's impossible to know exactly how long I will have to wait.  But my hope is that as my MELD score continues to climb, I will not have to sit and wait for very long.  

Assuming everything goes as planned, I will be kept in the hospital anywhere from 5 to 10 days, then sent home with an entire pharmacy of drugs, which includes several anti-rejection medications which I will have to take for the rest of my life.  Because my PSC is an auto-immune disorder, my body could at any time begin attacking and rejecting the new organ.  This could happen just after surgery or years and years afterwards.  Should this happen, I will have to begin the process of a liver transplant all over again.  I will also be temporarily diabetic and will have to learn how to manage my diabetes until my body is regulated once again and can do it on its own.  I will be extremely immuno-compromised and will have to live in a virtual bubble in order to stay healthy and germ free.  The plan is for my Mom and Matthew to be my primary care givers following the transplant.  That's the reason that my Mom took an early retirement just a few weeks ago.  Knowing that she will be here and can stay as long as she's needed brings me so much peace of mind!  When I had my surgery over the summer, she was able to stay about 7 weeks, thanks to the Family Medical Leave Act.  However, now we don't even have to worry about that!  Thank you Lord for your perfect timing!

I have so many emotions about all this.....from complete fear to total excitement to overwhelming sadness.  Trying to put it all into words isn't even possible.  There are days when I am overcome with an explainable sense of peace that everything is going to be just fine, and then there are days when I'm so consumed with the "what ifs" that I can't even look at my family without crying.  

Matthew and I have already had the "what if" talk and I've shared with him my wishes about his future and Kyndall's future, should anything happen to me.  He didn't want to talk about it, but it's something that we needed to do.  Actually, there is still a lot we need to do in that regard, but it's just not fun to go there so we've avoided it for the most part.  But, it's a reality that we must face in the next few weeks as we prepare for what is to come.  

I know that on the days I have peace it's because I have began to surrender this to the Lord.  I know that if I would just loosen my grip and let Him have this completely, I will experience His peace like never before.  But, I am human and I fail daily in that area.  However, God's timing is always so perfect and He is constantly teaching me things.  Just last week I started a Bible study at my church which focuses on WORRY and FEAR.  Could this be any more perfect for this season of my life??  I am learning that worry does nothing but steal our joy and leave us feeling empty and helpless.  

God's word tells us over and over again NOT to worry, yet we continue to do it anyway.  Why is that?  Did you know that the phrase "FEAR NOT" is used in the Bible 356 times??  Slowly, I am learning to TRUST the Lord, to SURRENDER my fears to Him and to rest in His PEACE.  

A few points that really hit me between the eyes last night during our study were: 

1.) The things I am anxious or worried about reveals the areas of my life where I do not trust God.

2.)  You cannot surrender to a person that you do not trust

Ouch.  When I think about those two phrases as they relate to this season of my life, it makes me realize that I've really missed the mark.  As a person who likes (needs) to be in control, I've got some serious praying to do before I'm able to hand all of this over to God---COMPLETELY.   

One of the things I'm focusing on during my journey is memorizing scripture.  I hope that by doing this, I can completely flood my mind and heart with God's word to the point that there is no room for worry, fear or anxiety to creep in.  And if it does, I pray that it will be immediately replaced with God's promises in the form of scripture.  This past week I focused on Psalm 112:7 which says

"They will have no fear of bad news; their hearts are steadfast, trusting in the Lord."

Could that possibly be more appropriate for such a time as this??

In an effort to end this post on a happy note, here are a few pictures from this past week when my Mom was in town.  We didn't do a whole lot and I never even broke out my "real" camera, but here are a few happy pictures that I wanted to share.......

Mom, Kyndall and I went and saw Frozen on Saturday afternoon.  Super cute movie and Kyndall loved it!!

While we were at the movie, Matthew was home turning Kyndall's toddler bed into a "big girl" bed!  She was so excited and has done great in it so far!  Now Mommy just has to decide on the perfect bedding set and her new room will be complete!

Monday was my scope and a full day at Vanderbilt.  Mom snapped this picture of me while I was in recovery, enjoying that good anesthesia sleep!  Have I mentioned how much I LOVE being put to sleep??  I'm not being sarcastic.  I really do love it!  I know I'm not the only one!!!  My family loves it because I am well known for saying some completely CRAZY things, which I clearly do not remember.  This time, Mom said I was very dramatic with my words, even telling her that the doctor "yelled at me" before putting me to sleep.  Oh my......

Since we were in Nashville all day (literally, from 6:30 a.m. until 11:30 p.m.) Matthew got the job of playing Mr. Mom for the day.  He texted me this picture sometime Monday afternoon telling me that he and Kyndall were getting ready to bake something.  It put a smile on my face and I came home to find that my kitchen survived and that's really all that matters!

When Mom and I got home, I snuck in to see my girl, since I hadn't laid eyes on her all day.  She was completely passed out from her fun day with Daddy!

On Tuesday my Mom was able to see what a typical day in the life of AA and Kyndall is like.  She went with me to drop Kyndall off at school, then we ran a few errands and then had lunch with two of my sweet friends.  We picked Kyndall up from school and since it was Tuesday that meant it was dance day.  And since it's dance day, that means it's our standing weekly Baskin Robbins ice cream date with Caroline and Glory.  We have about an hour to kill between school and dance, so every Tuesday we treat ourselves to some ice cream and girl time.  It was fun to have Grammy tag along with us!

Mom left on Wednesday morning and we hated to see her go.  However, I have a feeling as more and more testing becomes necessary leading up to my transplant, she'll be back quite often.  Maybe she should just temporarily move in!  =)

One of the things my doctor really emphasized on Monday was my need to stay healthy.  Not only am I extremely immuno-compromised right now, but it's also flu season.  Even the slightest cold could easily turn deadly for someone like myself who has no immune system.  Not only that, if an organ comes available and I'm sick, they won't give it to me.  I have to do my very best to keep myself as healthy as possible.  With this in mind, I refuse to put my life on hold or live in a bubble.  I just don't want to live that way.  So, my doctor has asked me (told me) to wear a mask when I'm out in public.  I've put it off and not been very compliant with his wishes until now.  I am learning that my friend Aimee who was in my support group and died unexpectedly last Tuesday most likely died from the beginnings of the flu.  That has definitely given me the wake up call that I needed and I am now sporting a lovely blue mask anytime I'm in public or in large groups of people.  I hate getting the looks and I can't stand the whispers, but I've gotta just ignore all of that and do what's in my own best interest.  

Last night I wore a mask to church and it was the first time Kyndall had ever seen me do it.  So, I had  a talk with her and tried my best to explain why Mommy needs to wear it.  She seemed to understand pretty well and even told me I look like a "pretty doctor".  Thanks??  

I gave her a mask to play with and she had fun with it

So there's my update!  I am excited and hopeful for the next few weeks and months and I ask that you continue to pray for our family and specifically that this will prove to be a speedy process.  Everyone is so ready for life to return to "normal" and to put this all behind us and move on with life.  I never expected to be facing two major surgeries so close in time, but I'm hopeful that once this one is behind me, I will be on my way to a better days where I can fully fulfill God's purpose for my life and truly enjoy the blessings He's given me!

I covet your prayers and I am grateful for the support, love and unwavering kindness that's already been shown to my family.  I am overwhelmed in the most wonderful way imaginable!!!

XOXO,

AA