Pre-Transplant Testing Day 2

It's taken me a while to get this post up, mostly because days 2 and 3 were absolutely exhausting in every way imaginable---mentally, physically and emotionally.  At the end of both days, I just wanted to turn my brain off and not have to think about anything health related at ALL.  

I'm back home now and I've regrouped and rested and had time to process most of what I heard and learned on days 2 and 3.  It's starting to sink in that this is really about to happen, but I'd be lying if I said I haven't had second thoughts or feelings of cold feet.  

Tuesday, Day 2, started at 8:30 a.m. with an appointment with the Liver Coordinator for Education.  Mom, Matthew and I met with Sue, who is a nurse and also my go-to person from now on for anything and everything regarding the transplant process.  She was as nice as could be and did a great job explaining in great detail what we could expect over the next few months and even the next few years.  

In a nutshell, here are a few things we learned from Sue.....

• After my week of evaluation and testing, my case will be presented to the selection committee, which is comprised of my own liver doctor, the liver transplant surgeons, nurse practitioners, social workers, nutritionist, psychologists, registered nurses and administrative assistants.  My liver doctor will serve as my representative and will present my case and as a whole, this team will decide if I'm eligible to be listed.  They do this by reviewing all of my prior testing, labs and psychosocial meetings.  A joint decision is made regarding my candidacy for transplant and once a decision is made, I will be contacted by phone to let me know if I am declined, deferred or accepted.  
• Once accepted, I will be listed with UNOS (United Network for Organ Sharing), which is a national organization grouped by region.  Vanderbilt is in region 11 which includes Tennessee, Kentucky, North Carolina, South Carolina and Virginia.  In other words, these are my areas of "competition" so to speak, where my urgency for an organ is weighed against other candidates based on my MELD score.  Currently, my MELD score is a 22.  Vanderbilt mostly transplants patients with a MELD score between 22 and 25.  I will be required to get blood work done frequently in order to keep my MELD score active and up to date.  
• Waiting times vary according to MELD score, blood type and body size.  Patients with a low MELD score may wait up to 2 years before being transplanted.  So, as crazy as it sounds, I almost WANT my score to continue to go up.  Even though I know this means I will feel worse, I also know it means I will be transplanted sooner.
• When a donor liver becomes available and it is a good match for me, I will be contacted by one of the nurse practitioners.  They try for ONE HOUR to contact me.  If they do not reach me within one hour, they move on to the next patient on the list and I have missed my opportunity.  Translation---NEVER STEP AWAY FROM YOUR PHONE OR TURN IT OFF FOR ANY REASON!!  They also had us fill out a phone tree, so that if for some reason they cannot reach me personally, they have numbers for all of my family members and close friends.  They will try all of these numbers over and over until they are able to speak to me directly.  I need to have my bags packed and ready to go so that I don't waste any time once I get the call.  We will have a specific plan in place for who to call, what to do with Kyndall and how to proceed in order to save as much time and stress as possible.  We are working on that plan now.  I will have about 4 hours to arrive at Vanderbilt, but two of those will be driving time for us.  Most calls come in the middle of the night, so I need to be prepared for that possibility.  They will not wait for my family to arrive at the hospital, so I will have to tell them "goodbye" over the phone.  Not the way I would like it, but that's just the way it is when everyone lives 10 hours away.  Time is crucial, for obvious reasons.
• Once I arrive at the hospital, I am to report straight to the ER and they will be expecting me.  Sue said I will be a VIP patient at this point so I will be taken straight back and admitted to begin the pre-surgery workup of blood work, x-rays, IVs, etc.  Once the surgeon has laid eyes on the donor liver and given his approval for it to be used, surgery will begin.  They told us to expect at least one "dry run" which basically means a false alarm.  There is no guarantee that the liver is healthy enough for donation until the surgeon himself has seen it and inspected it.  If he feels it's not suitable, then the surgery is called off and I return home.  This, I'm sure, is frustrating and emotionally exhausting but it's to be expected so I am already preparing myself for the possibility.  This also could throw a major kink in travel plans for our family if they begin their journey towards TN and then have to turn around and go back home.  But, it's just a chance that has to be taken.  If a dry run occurs, I do NOT lose my place on the transplant list.
• If the liver is acceptable and the surgeon gives his approval, then the process will begin.  There will be two surgeons working on me, one of which harvested the donor liver himself.  The average surgery lasts from 4 to 8 hours, but could be longer depending on circumstances.  By the time I'm out of surgery, my family should have arrived and will be there waiting to see me.  Once I'm out of surgery, I will be taken to the SICU (Surgical Intensive Care Unit) where visiting hours are limited.  I will still be asleep an unable to communicate or move the first time my family members see me.  I will be under heavy anesthesia, tied down, intubated and have many tubes, drains, IVs and monitors hooked to me in order to closely monitor my status.  If no major complications occur, I will be transferred to a step-down recovery unit after 2-3 days in the SICU.
• Of course, there can always be complications and problems can arise that weren't anticipated.  Sue gave me a long laundry list of possible scenarios, which was pretty scary.  But, she also gave me the national survival statistics as well as Vanderbilt's survival statistics for previous years and they were pretty good.  Pretty good meaning about 88% survival.  Vanderbilt performed around 150 liver transplants last year and the majority of them were very successful.  Given my age and having otherwise good health on my side should ensure a successful transplant, but there are always risks.
• Once I am able to walk, eat and be involved with my recovery, I will be released from the hospital.  This is can be anywhere from 4 to 10 days after surgery.  However, since I am not a local resident of Nashville, I will be required to live close by for 3 to 4 weeks after my release.  My support person and I will live in a temporary, furnished apartment during this time, which we will choose on our own.  We have a few ideas of where we would like to live, but there's no way to make arrangements at this point, since we have no idea what kind of time frame we're on.  Hopefully, one of our top choices will be available at the time we need it.
• I am required to name a primary and a secondary support person, who will both be absolutely crucial for my recovery (and ultimately my SURVIVAL) following my release.  My Mom will be my primary, since she is now retired and Matthew will be my secondary so that he can bounce back and forth between Nashville and Jackson and still hold things together at work.  The main purpose of the secondary is to serve as a back-up to my primary, should she get sick or have some kind of crisis.  If this should happen, it's SO important that my secondary can step up and take care of me.  I will be completely dependent on other people for everything, but the main role will be to manage my medications, take care of my incision, transport me to and from daily appointments and blood draws, prepare meals and just take care of me in general.  I also will not be able to drive for about 60 days so even after we go home from Nashville, my Mom will likely need to stay with me even longer at my house.  
• Following surgery I will be taking on average 50 pills per day.  These pills are crucial for my survival and my recovery.  The doses will constantly be changing, as the doctors work to figure out exactly the right dosing for my needs, based on my daily/bi-daily blood draws.  This is where I started to get completely overwhelmed, thinking about how much my Mom will have on her plate and how stressful it will be for her.  The nurse suggested my Mom memorize what each pill looks like, how big it is, what color it is and what it's used for.  She said that many people make large charts and graphs on the wall just to keep up with the ever-changing doses and frequencies of the medications.  Even the slightest mix up could be fatal to me or detrimental to my new liver.  The nurses will thoroughly quiz and test my Mom and Matthew before they ever release me from the hospital and into their care to make sure they are completely comfortable and confident managing my medications.  It's a lot of pressure!  I will also be diabetic following the transplant, so Mom will be responsible for checking my blood sugar, administering insulin and controlling my diet.  I told you, it's a BIG commitment!  I have no idea what patients who don't have the type of support that I have do in this situation.  I am essentially entrusting my LIFE to my support person!  It's in this case that I'm incredibly thankful that my Mom is a Type A, OCD perfectionist like I am!  =)  I know she will manage all of this like a champ and I am not worried one bit about her ability to juggle it all.  What I DO worry about is if something were to happen to her, such as getting sick from being worn down or just catching a common cold.  If she is even the slightest bit sick, she has to leave my presence IMMEDIATELY, as I will be extremely immuno-compromised and very sensitive to even the slightest germs.  Should she have to leave, Matthew will have to come in and take over and he will have to know Mom's "system" just as well as she did.  Let's just pray my Mom stays healthy and strong so that we don't have to go to plan B.  I told her to start eating her Wheaties and taking her Flintstones NOW!!! =)
• After being cleared to go home (officially), we will return to Jackson and I will remain under constant care for as long as I need.  I will also still be under close supervision of the liver transplant surgical team for 90 days.  After 90 days, I will return to the care of my liver doctor and the frequency of my visits and blood work will decline barring no major complications.  For the rest of my life I will be a transplant recipient, which means for the rest of my life the transplant team will be a part of my life, following my progress and checking on my well being.  

So, that was the FIRST appointment of the day!!  See why I was beginning to get overwhelmed??  That was only the tip of the ice burg!  Immediately, we were taken to another room where we met with a Transplant Social Worker.  A lot of what she said was more of the same, but a little more intensely presented.  She was great, but very high strung and she literally did not stop talking for almost two hours straight.  There is just so much more to this process than anyone even realizes.  She covered a lot of ground with us, talking about everything from expected costs and the need for fundraising to the emotional toll this will take on all of us and even into the details of how to contact my donor's family following a successful transplant.  My head was spinning by this point and I really wanted to just stop and take a breather, but there was no time.

We immediately went to my appointment with the Transplant Nutritionist, which I expected to be simple and easy but boy was I wrong!!  It's no secret that I am not the world's healthiest eater.  I love carbs, processed foods, sodas, sugar, salt and candy.  I DO NOT like veggies and I'm not a very big meat eater, especially red meat.  So needless to say, I was overwhelmed (again) by the strict diet that the nutritionist presented me with.  She said I must start following this NOW, in order to prepare my body for surgery and I will be required to stick to it following surgery as well, and possibly for a lifetime.  Then, she dove into the whole diabetes discussion and after that I really felt like crying.  I know it sounds silly and this should probably be one of the easiest adjustments of this whole process, but for a picky eater like myself, it's completely intimidating and scary.  Everything she told me NOT to eat are the very things I survive on.  The things she told me I MUST eat make me want to gag and I'd rather just starve than eat them.  She threw in a scare tactic by telling me that as they monitor my blood work leading up to transplant, they can tell what kind of diet I'm following based on my labs.  If I don't comply with what they've told me, they can defer me from the list!  

Finally, we got our first break of the day at about 12:30.  Where did we go?  Straight to the hospital cafeteria, of course!  What did I order?  Something completely forbidden but completely yummy.  I needed my comfort food after such an overwhelming morning.

Lastly, I met with the Transplant Psychiatrist.  I was most nervous about this appointment, simply because I've never been evaluated by a mental health professional and I didn't know what to expect.  I met with her alone, while Matthew and my Mom waited outside of her office.  She asked me a lot of questions about my life, my hobbies, my medical history and my feelings regarding transplant.  I must say I was a little disappointed in how it all turned out.  She was definitely not the "warm and fuzzy" type and spent most of her time looking at her computer screen, reading questions from a list and then frantically typing my every response into her computer.  She sat behind a desk the entire time and didn't make much eye contact with me.  Maybe I had false expectations, but I just thought it would be different.  I don't really know what I expected, but it wasn't that.  I only got emotional when she asked me if I had any questions for her and I explained to her the constant struggle I have in my mind and my heart regarding the donor and his/her family.  I got a little upset, as I always do when I speak about this aspect of the surgery and she didn't offer much support, other than shoving a box of tissues into my hand.  I told her how I struggle with feelings of sadness and guilt when I think about how happy I will be when my donor is matched, while at the same time, another family out there is experiencing unimaginable grief and despair.  It just goes against everything a normal human being (especially a Christian) should feel.  My joy will come as a result of someone else's pain and that bothers me.  Anyway, I guess I wanted her to tell me how very normal it is to feel this way but she didn't say much at all actually.  She just continued typing and nodding her head.  I felt silly.

FINALLY, after a long and draining day, we were finished.  We headed back to the hotel for a few hours just to decompress and process everything.  There were probably other things I should have done like touring possible apartments, but I just wanted to shut myself off from everything until the next morning when I had to face it again.  I skyped with Kyndall for a very long time and that helped take my mind off of things.  But, she did something she's never done before and it really bothered me.  She kept telling me "don't hang up, Mommy.....don't stop talking to me", despite already talking to her for a good hour.  Every time I would try to end the call, she would beg for me not to go.  BROKE MY HEART.  She's never seemed to be bothered when I'm away, especially when she's with her Nonie or any of our other family members.  But, for some reason she just did not want me to go.  I finally had to just hang up, as it was almost dinner time by this point.  Matthew's Mom texted me a few minutes later and told me she was ok, but I still couldn't help but wonder why she was so needy for me.  I think she senses much more than what we realize.  I know she can't possibly understand the magnitude of what's about to happen, but Kyndall is a smart girl and she picks up on things that often times we don't even realize.  I am being as open with her as I can because I think she's the kind of child who needs her questions answered and needs to know what to expect.  I just pray that during the month that I'm away in Nashville, she will be able to handle it.  Well, that we will both be able to handle it!

Here are a few pictures that Matthew's Mom sent me throughout the day on Tuesday.  I love that she does this for me so that I can at least feel like I know what's going on back home.

Apple slices for breakfast!

McAlister's for lunch!

 Oatmeal for dinner!

As I promised, we returned to Opry Mills so that Matthew could spend some time in Bass Pro.  I figured it was the least we could do since he followed me and Mom in and out of many, many girly stores the day prior!

Like a kid in a candy store

While Matthew drooled over guns and other objects used to slay innocent animals, Mom and I wandered into the ladies' clothing section.  That's where I found these.  I have now seen it ALL.  I mean, really?!

We almost walked away with this gun, but thankfully my husband is not an impulsive spender and he wanted to "think about it" for a few days.  

I ended up being the only one who bought something, which was odd.  I found a new winter coat that I LOVE!  Now, to see about getting it monogrammed!  =)

We ended the night with Cracker Barrel for dinner, where I indulged (again) in something I shouldn't have.  French toast covered in warm butter, crispy bacon and scrambled eggs, topped off with a sweet tea.  I sure hope my transplant team doesn't ever run across this blog!  I will surely be in trouble!

By the time we returned to the hotel, we were all exhausted.  To bed we went, but my mind did not rest.  And, little did I know, I was in for even more surprises on Wednesday, which proved to be even more stressful as several unforeseen kinks got thrown into our plan.  More on that in my next post.