5/29/2016 - A Post to all while I'm under the knife

The beauty of technology is helping to make us feel more connected and more supported.  Many of you have reached out to add your support to our on-line coordinated support site, Lots-a-helping-hands.  If you have not and you want to, please navigate to the link: https://www.lotsahelpinghands.com/c/729068/

I'm able to write this post now hours ahead of the surgery, and schedule it for when I go under.  Like a new age message in a bottle.

I can tell you already that my family and friends, that closely surround me, will be exhausted.  I can tell you that I will be in pain (after having an organ taken out when I was 7).  I'll can tell you that I'll be grumpy, groggy, and I likely won't feel like doing much.

I hope my kids understand and do not get upset with me, I know they need their daddy, and I know my wife needs her husband.  That's why I need each of you to step up as best you can while I can't.

The out-pour of help is great, the texts, the e-mails, and the meals.....just keep in mind, this is a marathon.  When summer picks up and you all are enjoying it ... we would love to be carefree and healthy to enjoy it with you.  If we can't this year, we at least want to be smiling with you all.  Just check in with us, share photos of your kids smiling, eating ice cream, call Tessa to check to see if she's doing ok.  I mean that.  Go ahead, use your google calendar to setup a random reminder or two over the next 3 months to ping her and talk.  I'm challenging you to that.

As for me, Tessa can attest that I've got a pile of 10 books or so that I need to get through, several shows I can binge watch, and need to keep as strong and healthy as I can.  I will likely try to isolate myself until my immuno-suppressant meds and I meet at an agreeable place and stabilize over the coming months.  I will be very cautious of visitors and seeing if I can keep my kids as healthy as possible.  If our kids get sick then I will need to be isolated from them too.  I anticipate this to be the most crushing when I recover.  Don't take it personally, it's all business.

To my mother, father, and sister:
I love you all more than you know and appreciate everything you have offered to me over time.  How caring and understanding you all have been for all the medical crap I've had to deal with.  I know it's upsetting to you all but you've been good sports and life has actually played out swimmingly well minus this setback.....such a far cry from what I thought might happen when I was 7.  I'm going to fight this as battle as best I can.  Keep Tessa Surrounded with your love, I'm so happy you're in our neighborhood now.

To Tessa, Leila, Eli:
You all mean the world to me.  God willing, we'll all get through this together.  They say the odds are way in my favor and so we have to believe in that and trust the skilled hands of the surgeons and hospital workers.  I know it's hard when we want to control things, but we can't.  So, we focus on things we can.  Tessa, reminder to setup kids doctors so other care takers can take them to appointments if needed.  Lean on my family and yours, lean on Lara, lean on Tita Shelly and GG, lean on all of those folks who are strong while it's hard for you.  They will keep us all afloat.

To change your organ donation status (Thanks Morgan!):
http://www.dmv.state.va.us/drivers/#organs.asp

5/28/2016 - The Latest...like an plane in O'Hare....delayed

Around lunch, the surgeon came in to tell me that the organ donor harvesting team had not yet assembled to remove the organs (they harvest many organs from the donor to save as many people as possible).  They anticipate that to start at 11pm EST on 5/28.  With the removal taking some hours, and then the liver needing a biopsy, I'm scheduled to be on the OR table at 5AM 5/29.  Of course, any or all of this is still subject to change.

The best news is that I was able to eat lunch (up to this point I was Starvin' Marvin).  My metabolism has been geared up because I played soccer night before last (crazy to think that), and I didn't eat for 14 hours.  Lunch is in my belly now and I've been told I can have a light dinner which I'm excited about too. Tessa got me some dark chocolate so I'm all set to watch the Champions League final from my bed at the hospital.  

The kids are able to come and visit so I can see them before I get too beat up and so I can try again to explain what's going on to them.

Thanks for your continued notes, thoughts, and prayers as we wait. (Also, thank you all for signing up on the site listed in the previous blog post).

Best,

Matt

PS - Funny or Not Funny?  When the nurse was checking me in last night asking what valuables I had, the mood was pretty dark.  I said calmly, Laptop, Cell Phone, Charging cords, and $25,000 in cash.  She shot a look over at me and I was smiling....my wife was not amused but I was laughing at it.

5/28/2016 - Turn Shit into Sugar: Opportunism

Have you ever seen the Geico commercial, where the former NFL player, Ickey Woods is at the grocery deli? And when his ticket number is called, he starts doing this touch down dance yelling "wool! 44 that's me!! Get some cold cuts! Get some cold cuts!! Wooo!"?

We love that commercial. If you see Leila, she will actually say it for you. Makes us laugh all the time. But I digress.

Well. Last night after we put the kids to bed, that was us. Our number finally got called. We got our second call from The Georgetown Liver Transplant Coordinator at 10:32pm. A 33 year old woman, local, around the same size as Matt, healthy, low risk... Unfortunately had a stroke while having a c-section, and passed away. She was listed as an organ donor. She qualified as a perfect match for Whitey.

(I know. It is hard to even write that down as parents... Much less to be joyful that that is our option. But, that is our reality.)

Anyway, Matt is the primary recipient of her liver, and there is a secondary recipient and possible tertiary recipient waiting for it here at Georgetown, in case last minute Matt does not qualify. We immediately called Matt's parents and Bill (my father in law) came over immediately to watch the kids overnight.

We woke the kids up, and did a White family hug. Told them that we loved them, and that daddy is going to the hospital. Eli didn't seem to understand, but Leila looked pretty concerned.

We got into the cancer car, and got over to the Georgetown ER. Matt only went through one semi red light. (I'd call that a win!!). We stepped into the ER, and I swear, I have never seen such service at a hospital. They were waiting for him, and we walked right up to the transplant floor. We did the paperwork from bed.

They did another chest X-ray, EKG, and then blood work to make sure again that Matt's antibodies matched the donor. (My Lord. All the tubes. Insanity...) Then they did the IV. For some reason, they had to get Matt 5 times before they got a good IV started. His kept "blowing out" and his vein would disappear. I felt awful for him.

By the time that was all done, we were sitting in the bed at 3am... Laying in the bed together, trying to get some rest.

I'd doze off, and look over at Matt. Usually his eyes were open and he would smile at me. Or tell me he loved me, and we would try and go back to sleep. We finally got a few hours in here and there. We actually were pretty comfy all snuggled up on the hospital bed.... Which is nice considering that this will probably be the last night we can sleep like that.

Anyway, I'm babbling. The surgeon, Dr. Alexander Helmut Kurt Kroemer MD (very direct. German ) told us that the organ was still in the donor, and they would be testing and evaluating today. He examined Matt, and said that the procedure would be more complicated due to his existing scars... So it would likely be an 8hour+ transplant. He wouldn't give us more information, but said it would likely be around 10pm tonight.

Fingers crossed that this works. It is a lot of hurry up and wait.

For now, we are both a little on edge, but have received all of your calls, texts, Facebook messages, emails, etc. cheering Matt on. You have no clue how much it means to us. It makes us smile... Especially now in the waiting stage.

12 hours in from the initial call... And it seems like an eternity, but oddly enough time is standing still. Does that make sense?

Many of you have asked how you can help. Our dear friend Lara McCauley has set up a website to help us out. If you are interested in helping in some way (having a meal delivered, driving, helping with the kids, mowing the grass while I'm not able to, helping take out the trash, providing money for parking (it's pay parking only which drives me nuts)

Go to our Community web address: 

1. https://www.lotsahelpinghands.com/c/729068/
   
   Instruct the people you've invited to use the ‘Join this Community’ link to fill out the form which is a Request to Join the Community. Once they've done this, Whitey, Tessa, and Lara will receive emails stating that there are ‘Pending Members’. Members will be automatically notified and provided instructions for signing in to the Community.

That's it for now. They have given Matt the okay to eat until lunch. So I am on the way to get him something delicious.  

Lots of love, 

Tessa

5/24/2016 - Upgraded MELD... and no news.

I realize it's been a while.  One of my best friends and I caught up with an old high school buddy of mine who is moving out of the area with his family.  This was maybe two weeks back.  he is a pretty quiet guy and we were in the car driving  headed to a DC United game.  I still distinctly remember him squeezing my shoulder and saying "Hey man, I read the blog, and appreciate the updates.  It doesn't even have to be long winded.  Just a short note to let us all know you're ok and what's up".

I'll do my best to hold myself to that, because there is always stuff going on and I would like to keep people better informed.

My MELD was increased from a 29 to a 31 effective on May 18th.  It's good that my MELD is higher because it cuts the chances that someone can leapfrog me in my wait-list status.  Having said that, I'm still waiting with no new calls or offers.  There was no "A" blood type transplants done in the last week. My first transplant coordinator who was out on maternity leave may or may not be back, I'll know more in Mid-July.  She's really cool though and it would be nice if she did return. The person who has covered me while my primary coordinator is out, is good too but it would be good to keep all the history.

Lastly, I've had lots of requests for people asking how they can help when the transplant occurs.  For the first 2-3 days, I won't be able to talk, will be on ventilator likely, and pretty much a vegetable.  There won't be a lot that people can do immediately as I'll be in the hospital for 10 days before home, but in the weeks following, we will.  Our good friend Lara has setup a website (http://lotsahelpinghands.com/how-it-works/ ) that you can register with if you might be interested in helping.  It will keep people organised so meals don't overlap and also so my immediate family can concentrate on our family unit and don't have to worry about logistics.  See below:

If you are interested in helping in some way (having a meal delivered, mowing the grass while I'm not able to, helping Tessa take out the trash, providing money for parking (it's pay parking only which drives me nuts))

Go to our Community web address: 

1. https://www.lotsahelpinghands.com/c/729068/
   
   Instruct the people you've invited to use the ‘Join this Community’ link to fill out the form which is a Request to Join the Community. Once they've done this, Whitey, Tessa, and Lara will receive emails stating that there are ‘Pending Members’. Members will be automatically notified and provided instructions for signing in to the Community.

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.

OR

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. 

xoxo, 

Tessa

Had to leave the cutest pic of our little homies 

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.....

~Me

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....
Whitey