Monday, December 21, 2015

12/16/2015 - Transplant Market Update

I am always asking where I stand on the transplant list and it's hard for doctors to tell me because it's squishy depending on bloodtype, etc.  On Wednesday Dec 16th, Georgetown Hospital did 3 liver transplants.  I was able to get some information:

Adult - Blood Type B
Adult - Blood Type O
Pediatric - Blood Type O

I also heard through the rumor mill that Eddie Island a transplant surgeon who I met with for my initial transplant meeting, has resigned.  I don't know the details or where he will be going but a little saddened to hear.  I know Dr Tom Fishbeine is still there and he's my #1 choice but I can't control
who I get.

The other surgeons are Dr. Matsumoto, Dr. Girlanda, Dr. Desai, Dr. Hawksworth, and Dr. Kroemer.  I was told that they usually they will come in and speak with me prior to the surgery, so I will have a brief chance to meet the surgeon prior to the operation.

Monday, December 14, 2015

Tis the Season

When I was a child, I never quite understood why grown ups didn't get into the holiday cheer.  It was the most magical time of the year, the time when I believed that anything could happen if I wished hard enough for it. I truly believed in Santa Claus well past a reasonable age... Because I believed that over Christmas, anything was possible. Why would I ever have given up on that hope?  I even got that 10 speed bike with a bow on it one year. The exact one I dreamed of.

In 3 years, I have become a wife and a mother of twin toddlers. If you read those ridiculous hashtags of literally millions of blog and Instagram mothers out there, they say #2UnderTheAgeOf2! Meh... eye roll. If you had asked me at the end of last year if I thought that that had made me an "adult," I would have told you no. Big deal, we just dealt with our hectic, but completely awesome life!

In the last 8 months since Whitey got diagnosed, I have become one of those adults.  A little stressed about finding the perfect gifts, decorating, logistics, etc. More shocking is that I even consider myself an ADULT. To anyone who knows me, it is probably hard for you to imagine this, either.  True, I am still the same quick tempered, impatient, sometimes foul mouthed girl (sorry mom and dad!) who thinks flatulence jokes are the BEST (because they are), and can win almost all beer chugging contests. That is still me, take it or leave it. I thank god everyday that Whitey took it, as we are polar opposites in those ways. Hey, opposites attract, right?

But ever since the end of April, the proverbial shit has hit the fan.  Adulthood has come flying at me like Miley Cyrus' wrecking ball.  To be clear, I think Miley is absolutely revolting, and I would do almost anything to run away from it (and her!)

In 2015, Whitey and I officially became grown ups. We have gotten dealt some of the crappiest hands... Cue drum roll with the pitiful violin playing in the background:

  • Second Cancer diagnosis.
  • Getting told that my husband needs a liver transplant.
  • Chemotherapy.
  • Feces throwing, mentally ill, HIV infected roommate for Whitey after Tace surgery.
  • Countless visits to doctors.
  • ER visits for both Whitey and Leila.
  • Whitey having surgery on his mouth and surgery to extract moles that are inconclusive whether or not they could be cancerous now or in the future.
  • Leila Bean admitted into the hospital for a week for a staph infection that infiltrated her bone. By far one of the worst experiences, having this tiny little girl not able to walk because she is in so much pain, crying (literally) 24/7, can't tell us what is wrong... And having to hold her down with 4 other grown ups, to keep her body still for an IV which they'd ultimately miss to get to her tiny veins... All while she screams "mommy!  I'm sorry. Please no hurt Yay-uh (Leila). I'm sorry...please.." Multiple times a day. Looking at me like I am punishing her for being so sick. It still makes me cry thinking about it.

Top it all off with major (negative) insurance changes, toddlers who have an affinity for getting buck naked with zero regard to the state of their full diapers, and the stomach flu over Thanksgiving? To be completely honest?  I am tired.  Exhausted mentally.  Is it okay to not be into the most wonderful time of the year?

You see, this time of the year, Whitey will definitely move up the donor list. Why?  To be blunt, there are more car/motorcycle accidents during the holidays, and therefore more organs become available. Actually, with every holiday, we knowingly look at each other and think, "this could be it!!"  I feel like a horrible person hoping that one family's final misfortune could be our ultimate gift.  It is like the saddest Gift of the Magi story ever. 

A thanksgiving turkey is awesome... Especially when it is fried to perfection... But a thanksgiving liver would be even better. I know, I know. It is morbid, sue me! But it is our reality.

It seems like everything in our life hinges upon the transplant. We have sadly missed and will miss weddings and celebrations of people we hold dear to our hearts. Our friends and family pause to give us their awesome news, in fear that they don't want to rub it in our faces (which by the way, please please please tell us!  We are social people, and LOVE to hear great news.  Your happiness fuels us!!) We cannot travel more than an hour away, and we jump when the phone rings and it is a number we do not recognize. Just in case. And when we do get "the call"... It could very likely be a false alarm. Yes, I have heard these false alarms can happen for a number of reasons:  someone else needs it more, it isn't a good quality liver, it isn't a good size, not a great match... You name it. We are ready to be called multiple times just to be let down. It is just the reality of this waiting process.

As I read back on what I just wrote, I realize more and more that yes. Adulthood is here. Whitey and I are definitely grown ups, with grown up issues to deal with.... And sometimes I wish I could just tell Santa that all I want for Christmas is for my husband to be healthy. Because he deserves it. But other times, I just wish that Santa could take away some of these "adult" issues, and just allow me to be a wife and mother again.  Because I felt like I was good at being those things, and this new adulthood is a completely new ball game.  One that I feel sometimes that I am the worst player on the field: dropping the ball, and completely missing the goal all together. 

But before you go and think that I am too filled with bahumbag to want to welcome
Christmas into our hearts this year... I still have hope. It comes everyday in little ways:  a Christmas card from our family and friends, the look on the faces of Eli and Leila when they saw the Christmas Tree for the first time. I mean seriously.  Look at those faces.  How can I not LOVE the holidays? You would think that they saw Rockefeller Center's Tree for the first time, instead of the twinkly lights only, tree in our kitchen (Yes.  The kitchen...which is usually off limits to them via baby gates. To minimize breakage of the ornaments!)

"Oh my goodness, daddy!  So Pretty!  I like it!" - Leila

"It's SANTA!  I KNOW HIM!!!"- Eli

When close my eyes, I remember that the holidays are supposed to be about love, hope, and family.  It is undeniable, that when Whitey, Leila, Eli, and I are huddled in our family hug and kisses every night before bed... We have all 3 of those in abundance.  I can actually feel it from my heart to my toes.

I am most thankful for these 3 people, and from them I have more than I can ever wish or ask for from Little Baby Jesus and Santa combined... Including the reindeer.  But just in case any of them are listening... A liver for Whitey would be awesome, too.

We love you all. We hope you had a happy thanksgiving, and will have an incredible Christmas and New Year. For all of you who still believe in the power of Christmas and Santa and all that... Put in a good one for the Whites... Because through all of it, if I search deep enough down in the pit of my heart, I still believe in Christmas miracles.


Besties in Christmas jammies!  But don't let them fool you.  2 Seconds later, they were pushing each other off the chair.  

Tessa loves Whitey - Photo credit

The naughtiest, cutest boy ever.  Photo credit:
Swoon.  Please stay this age forever, my sassy little lady. Photo credit:

Whitey's holiday party this past weekend

Finding our tree at the Merrifield Garden Center.  

Thursday, December 3, 2015

11/21/2015 - Facts and Feelings

Backstory on the Post Subject:
I remember one day when Tessa came home from the office and was laughing and told me a story where she had been talking to her boss (one of her good friends at work) and he was demanding that she give him "Facts, not Feelings".  So in the words of Friends, I'll pivot on that idea...

Sometimes I think it's the waiting and uncertainty that gets to you.  If I were talking about the markets I'd say that uncertainty, and lack of definitive information about interest rates, is the reason we see choppiness in stocks.  People are generally impatient and when lacking information, can get spooked.  I think the lack of definitive timelines or transplant date is causing the same effect on Tessa and I.  Each us us is just a little more on the edge and we're both a little more chippy.  I think it's totally normal, but that doesn't make it easier.

My company was just acquired and they're making some changes to the healthcare pan (which means more out of pocket), so that's had me occupied more over the last week as I've been trying to determine what that might mean.  In addition, it looks like they might have changed their Short Term Disability policy in terms of how much they pay out while I'm on Short Term Disability.  That actually has larger implications than the insurance change as I'm predicating I'll be out for 3 months.  Of course, since I cannot know for sure if the transplant will be 2015 or 2016, I really don't know how to best choose the right plans.

My MELD score was upgraded
Old MELD score: 25 (set on Aug 18th)
Current MELD score: 28 (set on Nov 18th)
Next MELD score: 31 (set on Feb 18th)

Today, I reached out to my Doc for some "market color" on the liver transplant market. Specifically I was trying to determine what the liklihood is that a transpant would be a 2015 thing vs a 2016 thing.  You cannot fault him for not knowing for sure, that's the squishiness that I've alluded to earlier.  Below is his response (note, names and e-mail addresses altered to protect his awesomeness. I'd also like to call out how fantastic he is at communicating both in and outside of the office.

Awesome, Dr  <>
4:54 PM (12 hours ago)

to me 

Transplants have been busier recently but that's not always a predictor of what's to come. Timing is still unpredictable other than as your MELD rises the chances increase. However, before year end is still possible.

It's only fitting that I leave you with a John Wayne quote:
Courage is being scared to death . . .
and saddling up anyway.
~John Wayne