Saturday, March 26, 2016

3/25/2016 - The First Offer... and Rejection

For those of you who know me, you know I have a ridiculous sense of humor.  I could be mistaken for a 12 year old boy if anyone were to make realistic comparisons to my juvenile humor.  A good flatulence/body part/potty joke has been known to literally send me into happy tears and laughing so hard my stomach aches.  Yes, I do realize that I am now in my mid 30s and a mom, yet sadly, my humor has not matured with my actual age.  I don't believe it ever will, and I am okay with that.

That being said, one of my all time favorite games is called "What would you rather?"  As the name suggests, you and a friend (or group as it often goes) ask each other a series of questions.  You are given two equally bad questions, and the other person must choose.  The only rule is that you aren't allowed to answer, "neither" nor "both."  Simple enough, right?  Usually, these things start off tame:

"Would you rather be poor but gorgeous, or a millionaire and unfortunate looking?" (Easy, a millionaire.  Plastic surgery is always an option.  Obviously.)

"Would you rather listen to Nickelback every second for the rest of your life or......_______?" (Even easier.  You ALWAYS choose against Nickelback.  That band sucks.) 

As time goes on, depending on how well you know the person/people you are playing with, and the presence of adult beverages,  the questions usually can get pretty hysterical/disgusting/all of the above, on all levels.  That is usually when I have the most fun.  (By the way, if you have some really great ones, bring it on.  I will make sure to answer!  I am not easily offended!)

So why am I even telling you this about me?  Well, Friday night, 3/25/16  at 11:10pm, Matt (and therefore I) got the biggest What Would You Rather question of our lives.

 As we have written about before, Whitey has a pretty high MELD score.  This means that he is  high up on the list for receiving offers for liver transplant.  Because of this, we usually keep our phones on us at all times.  We never know when "the call" can come.  Tonight it did.

I was watching DVR'ed Scandal in the basement, and Whitey comes barreling down the steps.  I swear, it sounded like a herd of elephants racing down the stairs.  He looked pretty pale and put the phone on speaker.  A lady named Kristin was on the phone with him, and posed the offer:

"Which would you rather:  

1.  A male, approximately your age is now brain dead, and on life support at Georgetown Hospital.  He is your blood type.  As of now, he is considered healthy.  He does not at this point have known HIV or HepC, but he is considered a "high risk donor."  In the last 12 months, he has been in prison for 9 months.  He is known to be an IV drug user.  If you would like to take this offer, you should start coming to the hospital.


2.  You can decline this offer, it will not negatively affect your place in line, but you will be taken off as a candidate for this case and we will move on.  It could be next week, or months from now when we will call you again.

It just took us 2 seconds to look into each other's eyes and come to decision number 2.  And in those 2 seconds, I realized "$h1zz has gotten REAL."  We had just gotten our first offer for a liver.  We had been waiting for this call since the end of April 2015... and almost a year later, here we go.  And we said no.  Are we crazy?  Or was this the right choice?

So you probably have questions.  We did, too.  We always do.  Even though we knew the answers, it was good to ask them again for reassurance and good measure.  Therefore, I will try and answer the ones we had for you.

High Risk Donors:  As a general rule, we aren't supposed to know much information about the possible donors.  But, if a donor is considered "high risk," then the hospital needs to inform us of that information.  Which criteria render a donor "high risk?":

  • History of Hepatitis C.  (Yes.  Many patients who are in Matt's shoes already have HepC, so receiving a liver from a donor who tests positive is a possibility.  We already decided a year ago that this would NOT be an option for us, unless we are in dire straits.  Given that the treatment was successful for Whitey, and he no longer has the virus, we would no longer want to consider this as a viable option.)
  • Known IV drug user
  • Men who have sex with men (Which I have my own opinions on.  I would GLADLY agree to take any healthy organ, from a healthy person, regardless of sexual orientation/race/religion/sex.  I am sure Whitey is on the same page.)
  • Been in jail  
  • Prostitutes
    What percentage of donors are high risk?  

    There is no firm answer on this, but Kristen said that she can say about 25% of donors are high risk.  Was Whitey called because other candidates rejected the offer?  No.  He was the first person they called to offer.

    Whitey's position on "the List" 

     We were told again that "the List" is an ever fluid entity.  As we discussed before, his MELD score is a 29, and will be going to a 30 in about a month and change.  Yes, a 30 is definitely high up there. But, there are many factors that change his position.  This was the actual example she gave us: A person decides to go to the woods and eats a lethal amount of mushrooms in the woods.  He or she is admitted into the hospital because of liver failure and needs a transplant immediately to live.  Even if a liver comes up with Whitey's blood type today, tomorrow the mushroom eater will get the liver.  It is all on an as need basis.  

    Sidenote:  I personally believe that that person is a moron, and shouldn't be eating mushrooms off the forest ground anyway.  That's unsanitary.  They should have packed the right amount of food and beverage, like Whitey does before any hike, and they wouldn't have been in that situation.  Obviously my husband is smarter than this person.... and deserves it more.  Hahaha!  I kid.

    But yes.  As of 3/25/16 at 11:10pm, he was number one.... like he always is in my book.  Okay, that was mushy.

    Will rejecting this offer negatively affect his place in line, or future offers?  

    No, declining any offer for whatever reason does NOT have any bearing on future offers.  Whitey can reject because the donor is high risk.  He can decline the offer because he has been sick. He can decline the offer because we cannot get to the hospital on time.  

    No situation or circumstance will change this.

    Was this the biggest mistake we have ever made?

    Did we just make the biggest freaking mistake of our lives?  I know I went to bed last night asking myself that question over and over again.  I woke up this morning, while Whitey was playing soccer, and asked myself again when I first opened my eyes.  And I haven't stopped thinking about it.  

    Whitey could be in surgery right now.  Instead, he played soccer this morning, and is now bathing the kiddos.  Like this is any other day.

    Did we just look a gift horse in the mouth?  

    As the old saying goes, "A bird in the hand is worth 2 in the bush."  Whitey is a huge fan of this idiom.  Meaning, it is better to have a lesser but certain advantage, than the possibility of a greater one that may come to nothing.

    Knowing that Whitey just had his last MRI and series of tests on Monday, and the results came back favorably, I regret nothing....

    ...I think.  Damn it.

    We need to have these conversations.  Pronto.  If we are months or another year from now, and he is in worse shape, we definitely would have a longer conversation.  Since we are still relatively okay, I am okay with the decision.

    What now?  

    Ha!  Man, if I had the answer for this, 99% of my stress and anxiety would be gone!  Please tell me if you have this answer.  Seriously....

    Basically, more of the same.  We still wait... yet now, the temperature has gone from warm to a full on simmer.  We are on high alert as we can get the call again.  This can be tomorrow, it could be another year from now.  We can get multiple calls like the ones we just got.  We can go into the hospital, and find out last minute that it won't work out. (God, I hope not.  This wait is like cruel and unusual punishment on our hearts.)  On the other hand, I want Whitey and our family to live our life normally.  You take this away from us, and I swear, we are the happiest 4 people imaginable, in our cute little life.  

    Stupid effing cancer.

    We will be definitely staying very close to home and the hospital.  Kristen told us that many patients ask for a letter saying that they are speeding/on 66 HOV at the wrong time because they are on the way to the hospital for a transplant.  Let me tell you... I DARE a police officer to give me a ticket for speeding there.  Try me.  I'd probably ask them for a police escort on the double instead.  Hahaha, I can be very convincing. (Did I ever tell you I was in sales?!)

    We do ask for continued support, prayers, etc. It brightens our lives for sure.  If you see us, we are going to be pretty militant about making sure everyone is as healthy as possible.  We do NOT want to have to decline a great offer because Whitey is sick.  That would would break my heart.  

    I am most scared for Whitey, and pray every minute that this operation will be a success.  Before, during, and after. It haunts me... and I need to tell myself constantly to be thankful for this borrowed time before the surgery... as life will undoubtedly change after surgery. (I am sure for the better!) 

    Most of all, I am sure we will be holding the twins and onto each other a little tighter.  Part of me is really glad that they are still so young.  This way, they will not remember this time.  My heart literally aches knowing that the kids will not be able to see their daddy for the time he is in the hospital recovering.... they literally adore Whitey.  I wonder how my 2.5 year olds will understand that they need to be extremely gentle around the daddy who they climb on to give hugs and kisses to, every change they get.  More so, I am sad that Whitey won't be seeing THEM.  At the end of the day, I think we need them more than they need us.    

    It will be a tough time.  And we just got a huge dose of reality tonight.  But, this is all for the best.  And I have faith... I will always have faith in my husband.  I am told every day by different people that he is their hero, and that they are inspired by his strength and love of life.  They are right.  He is brave, he is a bad ass, and he deserves the BEST life.  Period.  

    We will have that.  Very soon.  Until then, we have infinite love for each other.... and if waiting ever gets boring, I can always rely on my trusty games of What Would You Rather. 


    Had to leave the cutest pic of our little homies 


    1. Rock on. Right decision. You are in our prayers. John, Amy, Catherine and Liam. Oh yeah and Bella

    2. You made the right decision. Thanks for posting. I have been thinking of you and Matt all weekend. You both inspire me with your approach to life. Looking forward to spending time w/you in the near future. I am so glad you have those beautiful babies to keep you more than busy. xoxox. Jojo

    3. If you need anything I'm right down the street. Would be happy to help in any way. You guys are in our thoughts and prayers.


    4. If you need anything I'm right down the street. Would be happy to help in any way. You guys are in our thoughts and prayers.


    5. Tess, When I read this I think Why God, did you give them THAT call with THAT liver...and as I truly believe in a higher power who only has love and will NEVER let you down,- I sense that you are being prepared for the Part 1 of the call and it will happen soon. Reading what you go through I admire the strength and positive attitude that you experience as a couple. What would have torn others down, shows the bond of unconditional love had kept you two strong and on the same wave length. Your children will get through the after surgery because there will be sooooo soooo many people there to love them until Whitey has his strength back to tickle, climb and kiss them himself. He is my hero, too, though I have never met him. A man that fights though he is sick and never complains is deserving of a healthy life- it will happen and trust that the road back to health will be aided by medical staff and family who will make the journey easier. I admire you, Tess, for being the glue - the spirit lifter and motivator to keep your family on the up and up. YOU, too are loved by all... Your Indiana family is only a plane ride away. My Michelle and Grayson will help carry you all until you can carry yourself. I trust THEIR strength to help you along. Prayers to you all. The cutest children in the world are loved by all of us. I look at their pictures daily and know that God is holding them in his hands and will continue to do so.. Love to all of you. 'Tita Sarah'

    6. Thanks for the update. I can't imagine the game time decision you had to make, and am praying for you that the perfect match comes quickly. Would you rather be back at Holy Spirit or...yeah, I can't come up with one. ;)