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 

    Wednesday, March 23, 2016

    3/22/2016 - Phone Call Results

    I took the day off for my tests yesterday and another day today to really be off for a day.  Tessa and I had taken the kids to lunch and were headed to look for a new sofa.  In the middle of browisng, I got a 202 call (DC area code).

    Now, anytime I get an unknown 202 area code, I always pick up.  It could be the call for either transplant or it could be my doctor.  I scurried away while holding Eli who was resting on my shoulder and found a quiet corner.  It was the office of my Transplant Hepatologist calling with good news.  CT of the chest was clear (no spread), and no meaningful changes in the two tumors in my liver.  I felt a huge sigh of relief and then walked back to convey the news to Tessa.

    Every call, you always fear the worst but I've been really lucky with treatment and monitoring so-far.  I just wanted to share the good news.

    When I get a hard-copy of the results, I parse through them like I do with the Fed's Meeting Minutes on interest rate policy.  Until then....or the next update.....


    Monday, March 21, 2016

    3/21/2016 - Post Birthday Check in

    Friends, Romans, countrymen / women - lend me your ears....

    I thought that was a cheeky opening, right?  No updates from me in some time, my apologies.  Things have been as busy as you would expect them to be with work / kids / general life.

    On the work front, my company Primatics Financial was acquired, the tail end of December, by SS&C. I've been working long hours on one particular client often taking work home with me and putting in time on the weekends too. The founders of our company are all in the process of exiting and cashing out, and moving on to find something else.  There is sure to be some elbowing as the void gets filled and there has been some additional fallout as well.  I'm just trying to keep my concentration on my client and trying to prove my worth but stay out of the fray.

    Leila and Eli are now 2.5 years old, and continue to be a handful.  They're both talking non-stop, love pushing back and telling us "no daddy" when they disagree with something. Tess has been working on getting them potty trained and I help when I can when I'm home.  For the most part, they've been doing exceptionally well with minimal accidents.  I think if Eli was on his own, he would likely be slower to adopt however he's pressured into it by Leila.  Bribing them with M&M's helps too (1 for a #1 and 2 for a #2).  Being our children, they have learned to game the system (a little bit here, a little 10 minutes later) just to optimize delicious chocolate treats.  Touche twins... touche.

    Now to the dark horse.  Cancer, that lovely little friend I would love to get rid of....

    I didn't mention it in a prior post because I thought it's really no big deal but then I realize that I want this blog to be inclusive of everything and not really try to shelter new (good or bad) so everyone knows what's going on.  I had three asymmetric moles cut out 2015Q4 at different times.  One day, sitting at work, I got a call from my dermatologist who told me that one of the moles removed was basel cell carcinoma or 'BCC'.  (skin cancer).  I really don't know what that meant, but I knew it was cancer.  At this point on the phone, I just started laughing.  "Are you ok Mr White?" asked the dermatologist.

    You just can't make this stuff up.  I told her you just have to laugh at it and then politely ended the phone conversation.  I sat there, stared at my monitors, and thought how I would break this to Tessa.  I figured, I would google it, to find out how serious it is, and then would tell Tessa that night when I got home in person.  Google and a couple of phone calls to people in the medical field and I found it is skin cancer....but it's like a "cancer light".

    As I said, I just wanted to mention it to get it all out there.  I just will have to be careful with sun exposure and really watch them post transplant.

    To be completely honest, we thought that the surgery would have been completed by now.  But alas, as in life, there are always roadblocks.  At the beginning of the year, we were also given some news about the liver transplant program at Georgetown.  Each program in the United States must report certain statistics post transplant to UNOS (United Network for Organ Sharing.)  Unfortunately, after taking on some "complex cases that had unfavorable outcomes," Georgetown's program had hit their own roadblocks at the 6 month and 12 month post transplant success/mortality rates.  Their numbers hit below par. Therefore, they have taken steps to rectify the situation.  Pump the brakes a little bit if you will, making sure that they are taking on better cases, ensuring better organ matches.  Basically just being really careful.  These are all positive changes, but that has also meant that the total number of transplants has decreased, and wait times has been longer.

    So here we are.  Thankfully, the chemotherapy that we did last year has done its job.  The tumors are roughly the same size, allowing us the luxury of waiting for a perfect match.  While waiting for the call is a complete mind game, we are making the most out of time together as a family.

    Today I went in to Georgetown for another round of tests.  MRI with and without contrast, CT Scan of the chest, and labwork.  I don't know the results yet but it's a pretty frequent routine for me now having to do this same thing every three months to maintain my spot on the transplant list.

    For people who want a little background, humility, and humor this is how it goes:
    I try to schedule all tests and labwork for a single day.  The alarm goes off when it's still dark outside, 5am something, jump in to the shower and jump out, long sleeve cotton shirt, soccer warmups or hiking pants with no metal, and slide into my orange crocs.  I get out the door blowing down RT 66 like Dean Moriarity (Kerouc reference anyone?) to try to beat the HOV restrictions heading into the City.

    Once I get there, I have to pay for parking (the single thing that drives me crazy because I'm already paying through the nose for tests and such).  I walk in to the imaging department and have to fill out a form saying I'm not pregnant, I don't have shrapnel in my body, and that I don't have prosthetic limbs or a penile implant.  This last point has had Tessa and I snickering every time.  I''ll leave it to Google and you in your spare time, but apparently the can put metal rods in there.

    I know who is on the overnight shift and the early morning shift.  I know Patrick the happy go lucky Jamaican who frequents listening to NPR and travels to visit family in London.  I know Kelly, the lady at the front desk, who is grappling with fertility treatment after treatment, and the debt collectors who are calling her.  In general, all of these people are like family in an odd way, you see them all the time. You care about them, and they care about you.  It's the golden rule exemplified.

    Anyway, they drop in an IV, immediately test my kidney function (also to be used to administer the Gadolinium test during the scan), I throw all my stuff in a locker, put on a pair of hospital socks that are supposed to fit up to size 12 (and I'm a size 13.5-14), and walk over to the MRI room.  I lay down to be pushed through a tube for 45 minutes being told when I can breathe and when I can't.  It's pretty relaxing usually because it's so early in the morning and I'm exhausted and haven't eaten anything in since the night before.  They do put headphones on you and you get to pick a station to try to drown out the MRI noise.  When the MRI gets going, it is a truly weird feeling.   Kind of like a warm knife quickly moving through a cross section of your body. Just when it's almost uncomfortable, it stops and then they do it again.  Just such an odd feeling.

    So how am I feeling and what's the outlook?

    I don't feel sick and I don't have any symptoms that I can notice.  I feel healthier than people my age which is scary.  If I hadn't gotten tested I'm sure things would be in a much less optimistic state right now.  Thank god for scans / check-ups.

    I'm still playing soccer at least once a week right now which I don't know how I'll do without when I have the transplant.  The transplant still looms over me and I have no idea of when things will happen. My current guess is May time frame because that is when my next MELD upgrade is.  I'm a 29 now, and it will either push to a 30 or higher. One of my big fears is not so much.  Surprisingly, surviving the transplant is not my biggest fear.  I've got faith in my body, how it will handle the surgery, and that the doctors at Georgetown are more than capable.  My biggest concern/fear is how my quality of life will change.  I'll be needing to take immuno-suppressant medication daily for the rest of my life(to ensure that my body does not recognize my "new liver" as a foreign body and try to fight it.  That would render it unsuccessful.)  I worry about how frail I might be, or if I'll be able to resume normal activities like my outdoor adventures etc.  (Maybe less so for myself but I desperately want to be a guide in the wilderness for my kids and really teach them to love and appreciate the outdoors and power of mother nature).

    It's getting late...I hope that my comments / thoughts help to keep you up-to-date and I appreciate you reading / following.  It means you care.  I've never met anyone with a perfect life yet so it's always good for us to all express our fears / weaknesses / and secrets.  I feel like it helps you heal.

    Best to you....