Friday, September 2, 2016

09/02/2016 - Lower my Pills!

I keep having some "Lower my bills" slogan in my head...must have seen it on the side of a metro-bus or something.  So, just ran with it to name this blog post....

I had an 8:45am lab appointment and a 9am office visit on Friday 9/2.

I was told that they would look at my blood levels taken that morning, and e-mail me later that day if I could reduce any further pills.  I had complained a little about how uneasy my stomach was with all the magnesium that they had me taking so I was hoping to drop down on the 5 pills I took daily there.

Later that day, the good news came in an e-mail:

Awesome, Miss <Miss.Really.Awesome@gunet.georgetown.edu>
Sep 2 (3 days ago)

to me, Tessa 
Mr and Mrs White-

Great to see your both today.  We can decrease your cellcept to 500mg twice  a day and your tacrolimus to 3mg twice a day. We can also go down on your Mag Oxide to just two in the AM and two in the PM.  So skip the lunchtime dose.

We will get labs as planned.

Thanks,

Miss Awesome, ANP-BC
Post Liver Transplant Nurse Practitioner
Georgetown University Transplant Institute


Translated to English that means I can reduce my CellCept (anti rejection drug) to take 4 pills a day rather than 8 pills a day.  I can also decrease my Tacrolimus (a different anti rejection drug) from 7 pills a day down to 6 pills a day.

Since I'm a numbers guy and you're reading, in the last week, I'm down to:
8am - From 14 pills to 8 Pills
2pm - from 1 pill to no pills, skip all together
8pm - From 9 pills to 7 Pills

So from 24 pills to 15 pills in a week, that's a pretty stellar decrease.

8pm Pills:


Toot-Toot

Looking forward over the next year or so, I hope to drop my cell-cept altogether and only maybe be on my Tacrolimus.  All of these drugs are hard on my single kidney so my ultimate goal would be to read in the New York Times about some breakthrough where they can find a way to stop taking pills and still have the liver perform and not reject in my body.  I really believe that this is possible and hope it's not more than 20 years away.  The biggest problem for me is that I already only have a single kidney and so if these drugs really beat my kidney up, I might need a new one of those too and that's too daunting of a prospect to think about so I'd much rather think that science comes up with some shortcut breakthrough....

Thursday, September 1, 2016

09/01/2016 - Staple Removal Bonus Photos

Some recent previously unpublished staple removal pics were uncovered from the vault.  Since you've been a loyal follower, I'll either reward or punish you (depending on if you like pics like this).  Commentary is all in the 6/20-ish blog posts so you get the story there, these are just the pics.




Monday, August 29, 2016

08/29/2016 - My 3 Month Anniversary

My liver just turned 3!  The 3 month liver birthday marker is significant for a number of reasons.  I have a meeting with my incredibly responsive nurse practitioner to discuss my progress and possibilities of drug reductions.

On the 29th, I was told that I could discontinue the following pills three pills:
1) Bactrim - 1 pill at 8am - antibiotics used to treat or prevent infections.
2) Valganciclovir - 1 pill at 8am - an antiviral medication used to treat cytomegalovirus infections.
3) Pantoprazole - 1 pill at 8am -  Treats gastroesophageal reflux disease and high levels of stomach acid.

Now, three pills might not sound like a lot however, that's 10% of the pills I take and reduced my morning 8am pill count from 14 to 11.  Now that's good progress (think baby steps).




Monday, August 8, 2016

08/08/2016 - First family vacation... in a long while

I'm really starting to completely feel like myself again.  I know it's been a while since I posted because the family and I had our first taste of real freedom and took about two weeks and spent it in rural Indiana.  It was fantastic for everyone.  We had been on a short leash, close to the hospital, always waiting for that fateful call.  After the operation, I was hanging close for follow-up appointments, and labwork.

My awesome nurse practitioner, told me that I was to come in every two weeks, with labs at a local lab on the off-weeks (so they still had weekly labs).  So, we took a looks to see if we'd be able to pull off a trip to visit my cousin about 45 mins North of Evansville and about 45 mins west of Louisville (Pronounce Loo-ah-vull for all you non-natives).  The specific area we were visiting was Gentryville, IN. I pulled up the lab companies website, and found a lab that was about 45 mins away from where we were staying, Owenbsboro KY!  Then off we went.


The kids were in free roam with the only worry poison ivy.  We spent time; driving and moving dirt on a T110 Bobcat,  mowing the grass with a Zero Turn Hydrostatic riding lawnmower, riding in an F350 pickup, driving a gas powered off road golf cart through the woods on trails, and I even got in some target practice when the tots were sleeping.  It was pretty much the best man-camp ever.




No real issues with getting to the lab or my bloodwork.  Most of the folks there were in for the pee tests for their jobs.  The ladies working the lab were so friendly...they told me "Hon, you don't need to make a reservation, you can just head on in and we'll take care of you".

It was Michelle's birthday, you all knew that she was staying with us for 1.5 months taking care of the kids while Tessa was looking after me.  Her fiance rented a houseboat and we all had a grand time on it, in Lake Patoka. The kids love being in the water and used it as a chance for multiple hours in the water each day.



This was a great trip and even worth it with the long car-ride with the Tots.  It was the first time I really felt like we all let our guard down and got to unwind.  It was great.

Monday, July 25, 2016

07/08/2016 - My Post 4th of July Georgetown Checkin

I was slated to go in every two weeks but from my last post, you know I was in the ER so that plan didn't work so well.  From now on, I was to go in locally for blood work every two weeks at Quest Diagnostics, and then every off week I head in to Georgetown for Labs and then doctors visit.

The most important things to track are my blood work at this point to make sure my liver is functioning well and we have a controlled dosage of Prograff (anti-rejection drug).  Also to check to make sure my kidney function is good because they tend to get worked hard with all the drug consumption.

So I've mentioned the pills that I take but maybe that doesn't hit home.  A picture is worth a thousand pills, right? Morning pills up top, Noon is just a single pill (covered) and then evening pills at 8pm.  Bedtime is just painkillers if / when I need them.






My Prograff level was slightly high so my one 5mg pill at 8am and 8pm is now Four 1mg pills at 8am and 8pm. More pills but lower dosage so it's a rob Peter to pay Paul type of thing.  Every two weeks they've been whittling down my Predisone dosages too. I was taking Two 5mg pills at 8am and now I'm taking One 5mg pill at 8am.  In two weeks, I hope to be off the steroid.  If I am, that means I can be off another drug too, my Nystatin 5ml, 4x per day.  The Nystatin is an oral medication that I have two swish around for two minutes and then swallow.  It's like a generic mouthwash that tastes like chalky gumball powder. Not in a good way, like, those gumballs that taste good for 5 seconds and then lose all their suga / flavor.

The reduction in meds will be a big win for me hopefully getting back to feeling more like myself, a big milestone.  My calves were cramping last week in the middle of the night so badly that I had to stand up out of bed to stretch.  It turns out that my prograff works to deplete my magnesium levels, so they added a Nooner dose of magnesium.  So now, 5 mag pills daily, Two @ 8am, One @ 2pm, and Two @ 8pm.

My blood pressure was ok but I was asked to keep an eye on my pulse which is flirting with 100 to see if I may need some additional meds to keep my pulse in a lower range.  Oddly, I also lost 2 pounds from my last weigh in two weeks back.

All in all, a pretty good appointment. Below are the bags of drugs and how I layout things when I create my weekly pill-box.



Until we have other news, I'm signing off.....

07/08/2016 - My Post 4th of July Georgetown Checkin

I was slated to go in every two weeks but from my last post, you know I was in the ER so that plan didn't work so well.  From now on, I was to go in locally for blood work every two weeks at Quest Diagnostics, and then every off week I head in to Georgetown for Labs and then doctors visit.

The most important things to track are my blood work at this point to make sure my liver is functioning well and we have a controlled dosage of Prograff (anti-rejection drug).  Also to check to make sure my kidney function is good because they tend to get worked hard with all the drug consumption.

So I've mentioned the pills that I take but maybe that doesn't hit home.  A picture is worth a thousand pills, right? Morning pills up top, Noon is just a single pill (covered) and then evening pills at 8pm.  Bedtime is just painkillers if / when I need them.






My Prograff level was slightly high so my one 5mg pill at 8am and 8pm is now Four 1mg pills at 8am and 8pm. More pills but lower dosage so it's a rob Peter to pay Paul type of thing.  Every two weeks they've been whittling down my Predisone dosages too. I was taking Two 5mg pills at 8am and now I'm taking One 5mg pill at 8am.  In two weeks, I hope to be off the steroid.  If I am, that means I can be off another drug too, my Nystatin 5ml, 4x per day.  The Nystatin is an oral medication that I have two swish around for two minutes and then swallow.  It's like a generic mouthwash that tastes like chalky gumball powder. Not in a good way, like, those gumballs that taste good for 5 seconds and then lose all their suga / flavor.

The reduction in meds will be a big win for me hopefully getting back to feeling more like myself, a big milestone.  My calves were cramping last week in the middle of the night so badly that I had to stand up out of bed to stretch.  It turns out that my prograff works to deplete my magnesium levels, so they added a Nooner dose of magnesium.  So now, 5 mag pills daily, Two @ 8am, One @ 2pm, and Two @ 8pm.

My blood pressure was ok but I was asked to keep an eye on my pulse which is flirting with 100 to see if I may need some additional meds to keep my pulse in a lower range.  Oddly, I also lost 2 pounds from my last weigh in two weeks back.

All in all, a pretty good appointment. Below are the bags of drugs and how I layout things when I create my weekly pill-box.



Until we have other news, I'm signing off.....

07/08/2016 - My Post 4th of July Georgetown Checkin

I was slated to go in every two weeks but from my last post, you know I was in the ER so that plan didn't work so well.  From now on, I was to go in locally for blood work every two weeks at Quest Diagnostics, and then every off week I head in to Georgetown for Labs and then doctors visit.

The most important things to track are my blood work at this point to make sure my liver is functioning well and we have a controlled dosage of Prograff (anti-rejection drug).  Also to check to make sure my kidney function is good because they tend to get worked hard with all the drug consumption.

So I've mentioned the pills that I take but maybe that doesn't hit home.  A picture is worth a thousand pills, right? Morning pills up top, Noon is just a single pill (covered) and then evening pills at 8pm.  Bedtime is just painkillers if / when I need them.






My Prograff level was slightly high so my one 5mg pill at 8am and 8pm is now Four 1mg pills at 8am and 8pm. More pills but lower dosage so it's a rob Peter to pay Paul type of thing.  Every two weeks they've been whittling down my Predisone dosages too. I was taking Two 5mg pills at 8am and now I'm taking One 5mg pill at 8am.  In two weeks, I hope to be off the steroid.  If I am, that means I can be off another drug too, my Nystatin 5ml, 4x per day.  The Nystatin is an oral medication that I have two swish around for two minutes and then swallow.  It's like a generic mouthwash that tastes like chalky gumball powder. Not in a good way, like, those gumballs that taste good for 5 seconds and then lose all their suga / flavor.

The reduction in meds will be a big win for me hopefully getting back to feeling more like myself, a big milestone.  My calves were cramping last week in the middle of the night so badly that I had to stand up out of bed to stretch.  It turns out that my prograff works to deplete my magnesium levels, so they added a Nooner dose of magnesium.  So now, 5 mag pills daily, Two @ 8am, One @ 2pm, and Two @ 8pm.

My blood pressure was ok but I was asked to keep an eye on my pulse which is flirting with 100 to see if I may need some additional meds to keep my pulse in a lower range.  Oddly, I also lost 2 pounds from my last weigh in two weeks back.

All in all, a pretty good appointment. Below are the bags of drugs and how I layout things when I create my weekly pill-box.



Until we have other news, I'm signing off.....

Thursday, July 14, 2016

Four Years Later... and Vows to a New Man

Four years ago, Whitey and I promised each other we would love each other in good times and in bad, in sickness and in health, till death do us part.  

My goodness, how we have been tested on all three of these vows, every day in the past year alone.  

I have reminded myself of these vows that we took every day since we received Whitey's diagnosis.  You think I am kidding, but I am not. Every night before I fall asleep, I look at my husband (usually sleeping) and silently say to him, "This is so damn hard... but my God, you are so worth it."

Whitey has asked me to write about what it was like for me while we were in the hospital.  I have put it off for the past month.  Why?  Because looking back at it, I am not entirely sure that I have processed it all.  How do I put into words the most gut wrenching experience of my life?  Today, I will try.

When we got the call, our lives changed immeasurably.  We were told that the donor was a 32 year old female, who had a stroke during a c-section.  As parents, our first thoughts were, "Did the baby make it?  That is completely awful.  What is going to happen to the father? I cannot even imagine."  And then, the transplant recipient in us whispered, "She was pregnant.  She is not a high risk donor.  She probably has not been drinking or doing drugs for the past months.  This is it.  This is our chance...  Wait.  You are disgusting and bad person for even thinking like this.  Tessa.  You're going to hell." 

In the two days that we were in the hospital awaiting the transplant after the call, this weighed heavily on my heart.  I knew that our chance at happiness and life ultimately meant another family's biggest heartbreak.  What I didn't anticipate was dealing with the feelings of guilt.  I mean, I am awkward even receiving a compliment from someone... To say that I failed in receiving this gift with grace is the biggest understatement of my life.  

Whitey and I had two nights in the hospital together waiting. It was the first time in over a year that we had time away from the twins.  Not exactly the romantic vacation that we had dreamed about, but we took advantage of it.  We held hands, told each other that we loved each other.  Watched Silicon Valley on HBOgo.  Slept in that surprisingly comfortable twin sized hospital bed, side by side.  I didn't want to leave him.  I kept telling myself that it could be the last day I spent with my husband... I needed to make it count.
A selfie taken in the hospital, waiting for transplant.
While we waited, my sister and mother in law brought the twins over to the hospital.  To say hello (and in the back of my mind, possibly good bye) to their daddy.  To give him hugs and kisses. For us to have a family hug.  I kept thinking to myself, "This could be the last time they ever see him.  This could be our last time together as a family."  And then forcing myself to stop thinking like that... and failing.  Because at any given moment, that thought was there, looming over me.


Cuddles with daddy before transplant.

Last family picture taken before transplant.


I realized that during this wait and anticipation, another family was saying their good byes.  But unlike our "maybe goodbyes if things don't go well...." this family was saying their "forever goodbyes" to a girl that they loved.  And so we waited patiently some more, held hands tighter, and gave more kisses.  Spent time together, as the donor's organs were "procured and tested."  The timeline kept getting pushed back, and we realized that it was probably because her family wanted to spend more time with her.  She was brain dead, but at least the machines were there keeping her alive.

The morning finally came, and Whitey's parents walked with us down to the OR. We had all decided ahead of time that they would be there when the surgery occurred. It was 5AM, and every single step seemed like I had concrete shoes on, my body carrying the heaviest heart.  Did I tell Whitey that I loved him enough?  Was a good enough wife to him?  I was so sorry for losing my temper... I'm sorry I ever yelled.  Did he know that he meant the world to me?  This surely couldn't be the end of our story... but what if it was?  If he left me during surgery, what would I do?  The thought of that took my breath away.  Would the twins remember what an incredible daddy he was?   What if this is it?  What if?... I should have... etc.  etc....


Before Whitey got wheeled into surgery.

Whitey with his parents before surgery


I wasn't fucking ready.  This was NOT what I expected our life and marriage would be.  I had willingly signed up for this... I just didn't ever expect that this is what would actually happen.  We are only in our 30s. We are parents to toddlers.  This wasn't our fate, we had so much more life to live.   

The doctors came into the Operating Prep Room one by one.  The surgical team told us that the liver had arrived and looked good.  (Yes, it probably came in the same kind of coolers that we put our drinks in during picnics. It was actually driven over in an ambulance.  Weird. I remember wondering if the ambulance had the sirens on.... ) The anesthesiologists came in and explained to us what Whitey would go through.  "He will be sedated when he comes out... it will take about 7-12 hours.  He will do great."  

Exactly how was he supposed to be under for that long without bleeding out?  How was that even remotely possible?  Machines.  That was the answer.  And really freaking good doctors and nurses.  I had to put my faith in people who didn't know us.   

So in those few moments that we had with our doctors, we made sure to to tell these doctors exactly WHO Matt was.  He wasn't just any old patient.  He is a son, a husband, a dad, my best friend.  We showed them pictures of our family, of the twins.  We told them that he like hiked Mt. Kilimanjaro and Machu Pichu, and likes to play soccer.  We told them anything to remind them that he was special... that he was my special person.  He wasn't in need of this liver because he was an alcoholic.... he had cancer twice in his life, and had gotten HEP C from a blood transfusion when he was 7 because of that cancer.  (In my head I kept thinking, "So don't you dare mess this up...he deserves your best")   

And just like that, it was time to say good bye.  I looked at Whitey, told him I loved him, locked eyes with him again, and we walked out.  He said he would get through this... and mouthed "I love you, too" to me.   And that was that.  I felt like I was going to throw up.  I wanted to run, I needed to tell him one more thing... 

The next 7.5 hours were a blur.  Because it was Memorial Day Weekend, the hospital was running at bare bones staff.  There usually is a surgical liaison to update the family on how the surgery was going, but this weekend, there was no one.  Just me, my mother and father in law, looking at each other.  Furiously typing on our phones, filling everyone in on what was going on. Talking about nothing, trying not to look at the clock.... waiting to hear anything.  

I don't  know why I checked the blog at this point... probably just something to do.  And then I saw this post that he wrote.  http://itisatumor.blogspot.com/2016/05/5292016-post-to-all-while-im-under-knife.html    Of course he did this.  It was SO Matt.  Always thinking of us.  

I also realized something.  There was another man in the OR when we were all talking to the doctors before Whitey's surgery.  An African American man probably in his 50s, was in the surgical waiting room was getting ready for his surgery, too.  I am sure he heard what we were telling the doctors.  In the waiting area a few couches down, there was another African American gentleman waiting.  As the hours drew on, we realized that he was waiting alone.  So, we all started to talk, and realized that we were all waiting on our loved ones to receive an organ transplant... for Whitey a liver, for Johnnie. A, a kidney.  

It did not take a rocket scientist to realize that we were now an unlikely family, all connected by the same donor.  And so we all talked.  For hours, about nothing and everything.  Watching the time go by.  And it helped me significantly, realizing that we weren't alone.  

By hour 7.5, I was restless. We had seen the main surgeon walk down, and tell us that the surgery went beautifully, and that Whitey didn't need any more blood in the form of a transfusion.  We were elated!  And awkwardly asked if I could hug him, and I threw my arms around the very formal, German surgeon.  Luckily, he was nice about it.   

The hours drew on, and no liaison had come down to tell us where Whitey was.  I decided to take matters into my own hands.  I went walking around aimlessly to find my husband.  I started on the top floor in the Neurosurgical ICU, and worked my way down.  I walked into the ICU saying, "I am looking for my husband.  He just had a liver transplant, and I have no idea where he is.  Could you help me out?"  Luckily, the nurses were extremely helpful, and guided me to his floor.  I walked into the Surgical ICU (SICU) and repeated my shpeal... and a nurse kindly said, "Oh my goodness!  No one told you he was up here?  I'm so sorry.  We are running on a short staff.  Mr. White has been here for an hour or so.  He is doing well.  Sedated.  You can go and see him."

You know that feeling when you are going up the hill on a roller coaster, just before you come swooshing down?  Or have you ever had a dream where you're under water and can't breathe?  Or where you are falling uncontrollably?  Or feeling like you have literally gotten hit by a bus?

It was all of that at one time.  My worst nightmare coming to life... because it was at that moment where I saw the single most important person in my life look... dead.  I cannot even begin to explain the feelings... tears started pouring down my face uncontrollably.  There he was... and he looked NOTHING like I was expecting.  When I thought of the word "sedated"... I thought:  sleepy, incoherent, but awake.  No.  He was none of those things.  He was gray, bloated, and strapped to the bed with arm and leg restraints, like a prisoner.  He had a central line in his neck, with four ports and another in his leg.  He had two drains filling up with blood coming out of his stomach area.  Two IVs in each arm.  A ventilator down his throat and strapped to his head, artificially breathing for him every few seconds.  I realized that he must have had a nose bleed in the middle of his surgery... because blood was crusted around his nostril.  It didn't take long to realize that a surgeon's definition of "sedated" really meant, "medically induced coma."

He wasn't moving.  He didn't know I was there... and yet, I talked to him.  I told him how proud I was of him.  How much of a bad ass I thought he was.  I thanked him for keeping his promise and not leaving me.  I told him I loved him... about a million and one times... and again.  Because I did.  I do.  In sickness and in health.  For better or for worse.  Till death do us part... but not that part.  Not today.


A few hours after surgery

Three squeezes means "I love you" in our house.


I saw Matt's parents walk in the room... eyes filling with tears.  I couldn't even imagine what they were thinking.  We kept hearing, "He did great!"  In the back of my mind, I kept thinking, "... In comparison to what?"  But I kept quiet, trying to trust the process.

I saw the nurse walk in with a hazmat looking suit come in, (face mask, gloves and all) telling me that he had to administer a medication to Matt that required me to leave the room.  If the medicine came into contact with the nurse's skin, it would be bad.  But it was okay to inject into my husband's body?  Seriously?  How was that even a thing?  And then it happened.  A man came in to take an ultrasound of Whitey's new liver, and lifted his blankets.  While looking at the screen, the technician went about his business, not looking at Whitey, placing the ultrasound probe on Matt's stomach....and immediately, Matt's face scrunched up, like he was in the most excruciating pain of his life.  His body literally writhed in pain, but he couldn't move his arms and legs... they were restrained.  

It was then that I freaked out.  I yelled at the tech to stop. Yelled.  Told him that just because Whitey couldn't open his eyes and speak, that he was still a patient that needed to be watched... and he had not taken care of my husband.  Mama bear came out in full, claws and all.  The nurse immediately rushed over, injected pain meds into Whitey's IV, and slowly his face slackened. 

THAT is how it was.  It was the most terrible experience of my life... and I was supposed to walk around like everything was okay.  So I did.  I faked my way through life that week.

The next few days were a complete blur.  Going back and forth, to and from the hospital.  Trying to be there for my husband... and trying to make it on time to see my children before they went to sleep.  Updating everyone on how he was.  Literally being pulled in a million different directions, needing to be there for everyone... and somehow failing at every aspect.  My kids were sad that I wasn't home.  They knew something was wrong.   

Whitey was not a joy to be around while in the hospital... or in the weeks to come.  I was told that it was the 1000mg of steroids that they administered to him.  It gave me some answers, but I kept on wondering where my sweet husband (who had never been mean to me a day in our 8 years together) had gone.  

I remember one day in particular.  Whitey's best friend, Blair, came every morning to visit, before I got there.  I appreciated this so much, as anyone in the DC area knows how bad traffic can be getting into the city in the mornings... especially with HOV restrictions on rt. 66.  When I got there, Matt seemed upset with me that I didn't come earlier.  I swallowed my frustration, telling him that it had taken me an hour and 30 minutes to get there with traffic, and another 20 minutes to get parked.  We visited for a while, and then Matt's parents came in.  It was decided that I was to go home, and stay with the kids, while Matt's parents would stay with him, and fill me in on what happened at the hospital.  When I got home, the twins were initially super excited and relieved to see me... but then that quickly turned into "oh wait.  Mommy left us, and we are mad at her.  Let's pretend she doesn't exist." Yep... didn't hurt my feelings at all... in my physically exhausted and emotionally drained state.  (ha!)  I got a call from Matt's parents, who told me that he was finally sleeping, and that I should just come back in the morning, and let him rest for the night.  I was happy with that plan, until I got a text from Matt at 9:45 at night, asking me to come to the hospital, that he missed me, and he wanted me there so that I could hold his hand while he fell asleep.  Well, who was going to argue with that?  I got there at 11pm, and immediately realized that he was in a terrible mood.  He told me that he needed a sponge bath (despite what you have heard.... not a terribly sexy thing...) and that he needed help to use the rest room.  Afterwards, he told me that my breath smelled horrible, and that it was making him want to throw up... in front of a nurse (not embarrassing at all.)  When I told him I was going to leave, it was close to 1:50am.  He started getting upset, telling me that he knew why old people didn't want to be left in a nursing home, because hospitals were lonely, and people went there to die.  He then told me that he expected me to be back at the hospital the next morning, preferably at 6:00am, so that I could talk to the doctor.  I asked him when he expected me to sleep, as I was exhausted and had been up literally for days, and he said, "Well, just figure it out."

I walked out of there telling myself, "It is highly frowned upon to punch a man in the face in the ICU... right?"  But that is what I wanted to do.  Have you ever seen the movie Knocked Up?  There is a scene where Seth Rogen tells his pregnant and hormonal girlfriend, "I know it isn't you who is talking... it is the hormones.... but F YOU hormones!!!"  Well, in our case, substitute Seth Rogen with me... and the words "hormones" with "steroids."

And that is how it was.  Ups and downs.  And so I smiled.  Hoping that things would get better... because we had reached rock bottom.

The second night we were there, I saw Johnnie A.'s brother in the ICU waiting room.  We said our hellos, gave each other hugs, and I actually went to with him to go and visit the man who now shared genes from their donor with my husband.  He was an awesome ray of light, and it was a pleasure to meet him.  He smiled and told me it was comforting to him to hear the conversation we had with the doctors in the OR prep room, and that one day he would like to share a meal with the man who has twin toddlers, climbs mountains, and plays soccer.  I kept thinking about crazy it was that our paths in life had intersected... but how we shared a bond so deep.  Unlikely new family members, profoundly joined by the same donor.  That is beautiful to me.

One day, we also got a visitor... the anesthesiologist that had been with Matt through the surgery came in to check up on Whitey.  Apparently, our conversation with him in the OR prep room before Whitey went under had left an impression on him, too.  He told us that it hit home, when he realized that he was the same age as Whitey, separated by a month.  He told us that he told his wife about us, as she was expecting their third baby in the coming months.  He realized how easily it could have been them dealing with this issue.  He also told Whitey how the doctors and nurses kept mentioning in the OR how Matt was in better shape than most people in that operating room, and that he is sure that Whitey will be back on the soccer field in no time.  That that is why he does his job, and is especially happy to work on cases where he knows where the recipient will make the most of their life.  He was genuinely happy he was for us, and wished us well.  It was things like that that solidified our decision to stick with Georgetown for the transplant, despite the old facilities.  The people were incredible.

Then it happened.  A few days later, I received a message from a dear friend of mine.  She said that she hoped she wasn't crossing a line, but had come across a webpage that might interest me.  It was a GoFundMe page... with a tragic story of a couple's untimely end.  There, before my eyes, I saw their story unfold.  I found out many things.  She wasn't 32, she was ten years younger.  But, the rest of the story added up... with almost 99% certainty, we knew she was our donor.  And the baby had lived.  I saw the picture of her husband holding their newborn.  I showed Whitey the page, walked out of the room, and wept as I walked away. 

I guess when tragic things happen to young people in this area, there was a great possibility that our stories would cross.  I just didn't think it would happen while Whitey was still in the ICU.  But if there was one thing I have come to terms with during this last month and a half?  Time and circumstances do not wait... life happens whether we say we are ready or not.  

I immediately felt horrible.  I was getting annoyed with Whitey's steroid roid rage attitude problem... when I am sure that the donor's husband would give anything to be in our position.  When things got difficult, I had to tell myself, "Grow up. Stop feeling so sorry for yourself in this situation.  This pain is temporary.  You know who you should feel sorry for?..." and I would go back to the GoFundMe page.  

We were the lucky ones of the ICU.  We had forward progress everyday.  Most people there were not as fortunate.

I realize I have written a book during this blog post... and I apologize for the long read.  But, I promised Whitey that I would write this post at one point... and why not be our anniversary? Happy anniversary, honey!  I love you so much... even when you were a complete jerk.  Stupid drugs.... thank God you are being weaned off the steroids.  Luckily, the side effects are wearing off, and my funny, sweet, and kind husband is making an appearance more and more, everyday.  

I will end with this.  To the brand new father, whose life changed so tragically the day before our life began.... thank you. We were given a chance at life because of your decision to donate life.  Our words aren't going to be enough to make you feel better, so, I will make this vow of action and intent to you:

I will honor your wife's life daily, by loving my husband everyday... because I know you cannot tell her in person anymore.  I hope you are comforted knowing that a piece of her lives on with us every day, that a part of her loves and is loved every single moment in our lives.... in at least two people that I know of.  In a time when our country is being shaken to the core by racial inequity and sadness, our three families ( Caucasian, African American, and Filipino American)  have broken those racial barriers... showing us that in the end, while we may look completely different and have different circumstances, on the inside, we were all created equally.  

We are forever indebted to you, and love you for making such a huge sacrifice.  I hope that we will all be able to honor her, by living our lives to the fullest.  I vow that along with Whitey, we will be the best parents we possibly can to Eli and Leila.  We will continue to provide them with unconditional love... and be the best parents we can be to them together. If I ever think that it is too hard, roll my eyes at their terrible behavior, or that life has dealt us a difficult hand... I think of you.  How difficult it must be to figure out parenthood alone... and how lucky I am not to have to do this by myself. Because of you, I will never take it for granted.  

We will continue to do so, everyday. With full intent.  Whitey and I will do this... together.  We will make sure that we make the most of the gift you gave to us, by loving each other, and our family with our entire souls.  We promise we will make your wife proud as she watches down on all of us.  Finally, I hope we get to meet one day to thank you in person.  

Happy four years, my love.  It has been a wild ride, especially this past year.  It has been so damn hard.  And while I wish our journey has been a little bit easier.. but my God... you are so worth it.  I am so lucky to have you in my life, to walk and navigate life every day with my best friend.  But for once... let's make our fifth year of marriage a little more uneventful. I love you.  


We are getting there!  Slowly but surely.

Monday, July 11, 2016

06/29/2016 - My One Month Mark - The Crack Debate & Sperm Count Request

I was looking forward to the psychological 1-month liver-versary of my transplant.  No special reason really other than in my mind I've got this logically divided into three months with the first month being the most rough (most drugs, highest likelihood of rejection, ost frequent hospital visits etc).

As part of moving through the recovery, they are trying to slowly decrease my anti-rejection drugs as long as my prograff levels are where they need to be.  They're also lowering my dosages of steroids by 5mg every two weeks.  Those are the puppies that amp me up, make it hard to sleep, and give me mood swings.  Once completely off the steroids, there are several other drugs that I can also discontinue.  But I digress.

On the eve of my one month anniversary, I got a splitting headache.  I logged it in my MediSafe app which I use to track my daily meds (you can laugh at my but it keeps me sane and also allows me to track my temperature, blood pressure, and pulse on a daily basis).  I figured I would crash early because Tessa said she could put down the twins.  I have never really had headaches like this.  I needed it cold, very cold, and dark.  I went around unplugging any LED lights or power indicators on electronics, they bothered me and were too bright.  I thought I could pound some water and sleep it off, I would be better in the morning, I thought.  Morning came and my head was still throbbing when it was time to take my 8am pills (that's when I take the majority of my pills).

One by one I put the pills back with water...still feeling horrible.  You don't need an award in journalism to tell where this is going.  Five minutes after, I threw up.  It was mostly water as I couldn't see any pills or pill casings.  I called the on-call transplant coordinator, who instructed me that it's likely the pills are still ok, and to call back if I throw up again.  The big concern is that I would miss a dose of the anti rejection meds and if still ill at 8pm, might throw those pills up too at which point I would need IV administration of said drugs.

At 9am, or shortly there-after, everything came up.  There was nothing left in my stomach and there was no question that all my meds were gone.  We called the on-call transplant coordinator back and she suggested coming in to the Georgetown ER.  So we packed a bag, water, anti-bacterial hand wipes, something to read, and headed in.

Transplant had called ahead and told them I was coming, but I still needed to get vitals checked and then see the charge nurse.  I explained everything, and then she gave me a face mask, and sent us to the "family waiting" area.  Thank god, this was a room with only 4 seats and it was only for us.  With a suppressed immune system and people coughing in the ER, we were worried that I could pick something up.  Being isolated and with a mask, it reduced the chance of infection / getting sick.  Tessa takes the following picture of me looking super excited and sends it out to the family via Text Message.


Ramon, Tessa's younger brother with a funny sense of humor, immediately takes a selfie from his home in California to cheer me up and sends it back out of the family.  In the below picture, the left is me in a red shirt with names of four of the best Arsenal players on it (which was a gift from Tessa).  On the right, is Ramon mocking me with his red shirt (also a gift from Tessa) with four of the best players from Manchester United.  He put on a dusk mask he found somewhere and also had a red backpack.  It really lifted my spirits and made me laugh.  Perhaps I should gift a native american dream catcher to the ER at Georgetown to make it nearly identical?



When they finally did call be back, there were no rooms, so I got stuffed in the hallway.  Lack of space is a constant and re-occurring theme at Georgetown.  Below is where they had me.  This is when this story gets good...and it's not about me, but more about our surroundings.

Because I was in the hall, I had one patient on either side of me and nobody had privacy.  Now I'm about to make fun of my situation and the surrounding conversation.  That's not to make light of the conditions that each of these people had, that's for the doctors to take care of.  Yes, I might go to hell, and yes, some of you might be offended, but this is my life and I was laughing at the whole situation.

ER Patient A

Patient A in front of me talking to a seated doctor who had a clipboard taking copious notes.  Patient A had a person from her support group there with her, which was good for her (bad for me).  Keep in mind there was absolutely no tone change during this conversation between the Doctor and patient.  It might be like if you and I were having an exciting conversation about filling your car up with gas.....very routine.

Doctor:  "So, you're feeling upset"
Patient A: "Sometimes"
Doctor:  "Have you ever cut yourself"
Patient A: "Yes"
Doctor: "When was the last time you cut yourself"
Patient A responds with a date
Doctor: "When was the first time you cut yourself"
Patient A responds with a date
Doctor: "How many times would you say you've cut yourself"
Patient A responds with a number

This number was apparently a good segue into the next obvious line of questioning.

Doctor: Have you tired Heroin?
Patient A responds
Doctor: Have you tired Cocaine?
Patient A responds
Doctor: Have you tired Crack?
Patient A responds, then Patient A's support group friend then asks the doctor to define the difference between crack / cocaine.  A lengthy conversation ensues between the three of then and somehow laughter starts. (I don't know all the differences but google turns up something).

All the while I can't help but to think, this doctor is getting honest responses (which is good) but can't this person see that there is no way they're going to let her out of here when she poses such a danger to herself?!  The other thing I kept thinking, is that movie 'As Good As It Gets'...where Jack Nicholson comments to his depressed neighbor who had just been robbed and says...."What if this is as good as it gets....".  No, I didn't say it....but thought about it in my twisted humorous mind.

After the doctor departs to likely make overnight arrangements, Patient A's support groupie (I'll just call her Groupie A) decides it's a great time to cheer up Patient A.  Groupie A then opens up her iPhone and starts reading off knock-knock jokes as one liners.  Now, I'm the biggest Dad joke teller of all time, but these were horrible....like....shameful. After each joke, Groupie A would play this sound from her phone.  It might have been the worst amatuer commedy hour ever.

ER Patient B

Patient B was behind me, much less entertaining, but much more annoying.  Patient B, a woman in her 20s, was ushered over right behind us.  She was moaning and dry heaving.  At first, I thought to myself, "Wow, something must really be wrong with her".  Every 2-5 minutes....you heard this throat gurgling noise...as she tried to wretch but couldn't.  Her dry-heave literally made you want to vomit yourself.  Seeing as how I had nothing in my stomach, it didn't bother me, but I could see Tessa get so uncomfortable she had to head out to breathe the diesel clouded air right outside the ER where the ambulances park to run patients in.  Plus, this vomit queen wanna-be wasn't covering her mouth as Tessa was informing me.  Feel sorry for her right?

Doctors and nurses would be walking the hall, and as they approached she would make her vomit noises, again producing nothing.  Everyone kept walking past her like she wasn't there.  I thought, man that's rough.

Not long there after, I found out why.  Apparently this is a person who "frequents" the ER with the same condition / symptoms.  I got that from the doctor who came over and said "Oh, I saw you a couple days ago with the same thing.  What do you think is causing it this time?".  That was about the extent of the interaction she got...I was discharged from the ER before I could get to the root of that story...but who knows, if I get back in sometime, maybe I'll see her and be able to finish this putrid tale.

ER Patient C: The Coup De GrĂ¢ce

This was the most entertaining story.  It happened chronologically last but I save it for those of you who have faithfully read all this way.  A little gem here.... A DC ambulance rolls up to the ER and the wheel a construction road crew worker (I could tell because of his boots and high visibility vest) into the back rooms of the ER.  Again, there was no pace for him so he was in the hallway with the joyful bunch of us (Patient A, Patient B, and Myself).

A hospital worker comes over to try to put a wrist band on him and admit him to the hospital.  He looked at her and said, "You ain't puttin that shit on me. Hell no".  She wisely decided that arguing with  him was out of her scope or work and just attached it to the stretcher he was on and reported it to the charge nurse.

Moments later, the charge nurse came over with his driver's license and another wrist band.  She handed him his driver's license:

Charge Nurse: "Here you go"
Patient C: "You sneaky little bitch, how did you steal my wallet".
Charge Nurse: "I didn't Sir, the arresting officer took if from you."

That's when my ears perked up and I thought, this could be an interesting one.  And I was a good judge of that.

Charge Nurse: "Sir, did you do any drugs today?"
Patient C: [Inaudible mumbling]  clearly not 100% there.
Charge Nurse: "Sir, did you do any drugs today?"
Patient C: "YES!"
Charge Nurse: "Can I put this armband on you for your safety?"
Patient C: "No way...not putting that shit on".
Charge Nurse: "Sir, we scan this when we give you medications, its for your safety"
Patient C: "Ok, fine....alright".
Charge Nurse: "The doctor will be over to talk to you when he can"
The nurse begins to step away and walks halfway across the ER.

Patient C: "NURSE!!!  NURSE!!!"
The nurse comes quickly back over
Charge Nurse: "Yes Sir, are you ok?"
Patient C: "I need to get an HIV test"
Charge Nurse: "Well, that sounds like a good idea and you should discuss it with the doctor when he's here"

Now I'm thinking....well, he's drugged up but if he was injecting, that probably is a good idea.  The nurse begins to walk away before...

Patient C: "NURSE!!!  NURSE!!!"
The nurse comes quickly back over
Charge Nurse: "Yes Sir?"
Patient C: "I need to get a sperm count check too"
Charge Nurse: "Sir, we don't do that here, you should talk to your primary care doctor"

At this point, Tessa and I are about to laugh our ass off but don't because this guy is drugged up, large enough to crush me into fine powdered cocaine or crack rocks (depending on who won the argument from patient A, Groupie A, and the Doctor).  So we did what anyone my generation would do, we started texting on our phones to each other despite being two feet apart.  I must say, the charge nurse handled it with aplomb.

Now I realize I've written a book with this post, shortly after all this I was able to keep down some crackers and ginger ale and left as quickly as we could.  Let this lengthy post also represent the lengthy 8 hour visit we had on my one month anniversary.

Saturday, July 9, 2016

6/25/2016 - So how does it feel post transplant? - No pretty little pictures, just words and thoughts

So how does it feel post transplant?

I think this is the biggest question I get all the time and certainly the one I think about most.  I think physically, this has been easier than I thought it would be.  I spent the better part of a year, playing soccer as frequently as I could and hitting the treadmill when I skipped soccer.  I took great care of my body and I was healthy.  I even played a full soccer game for a Virginia Tech Alumni team in Arlington Thursday night, the day before the Friday I was called in for transplant.  I felt and looked (I'm being modest) great!

Now, compare that with the many folks that I see who enter the Georgetown transplant institute who are often stuck with a much more morose case.  Many people are jaundice, many people are barely able to move well or walk, many people look sick and look to be in pain.  You can see from the expressions on their face, the lack of emotion and life.  Whatever brought them into the transplant institute, has taken a lot out of them and it's not a pretty sight.

Think about the quality of life that you imagine these people to have and it almost makes me feel guilty that I was so healthy feeling.  However, this actually I think makes is more mentally challenging on me, than on them.

I've got lofty expectations.  In many of the transplant cases, the people who were hurting with a very poor quality of life, come out of transplant and feel much better, even almost immediately.  Now I don't know for sure, but I would think this gives them a mental boost.  When I came out of transplant, I felt much worse.  I couldn't do anything on my own (even breathe).  I had to be assisted to go to the bathroom.  I wouldn't be playing soccer or running for months (I couldn't even imagine it then, or now, just quite yet).  The drugs that I was on were significant and heavy.  I was on steroids, anti rejection meds, anti bacteria meds, anti viral meds,...you name it.

The worst was the steroids.  I started having huge mood swings. I would get angry....very angry with people driving recklessly in their cars even if it was not impacting me. I was sad because I could not control my emotions and I knew this was very uncharacteristic for me.  I would say things that were mean. I knew they were coming out of my mouth and I did not mean it however I would just blurt out stuff without thinking.

Now I know the medicine is supposed to be leveling off in the coming months, so I'm looking forward to that and hopefully more restful sleep, more normal thoughts and feelings.  All in all, i'm still very fortunate to be given such a healthy liver and fortunate to be recovering so well.

Addendum:  

Most of what was written above was written in a evening when I know I was feeling the effects of steroids (Prednisone) which is known for it's numerous side effects.  Also, as my wife pointed out but I have not mentioned yet, the pathology report came back for the old (removed) liver.  It turns out I really really needed the liver as a third tumor was forming and was noted in the pathology report.  Had it developed more and been detected in testing, might possibly have meant, that I would not have been eligible for the liver transplant because of the Milan Criteria.  This rule exists so they don't "throw away" a good liver on someone who has had the cancer spread enough to where the organ might not provide a "successful outcome".

Friday, June 24, 2016

6/20/2016 - Liver Levels & Partial Staple Removal

Today was the first time I had been in the Hospital since last week.  It was the longest amount of time I had gone without seeing a doctor and checking my blood levels.  I was excited and slightly nervous about this

Twice in the past week, I had gotten splitting headaches and slept a lot.  I just wanted to be a dark, cold, and quiet room.  Since you know I have twins, quiet is not normally an option.  Thank the lord "Tita Shelly" is here to help Tessa.  I was able to crawl back into my room, put a pillow over my head, and crash.  This morning, I felt much better but I had decided to mention it at my latest check-up.

The bloodwork came back and I was "abnormally normal".  That's good!  She said it was odd to have most of my labwork look so normal.  For instance, my platelet count (due to the new liver) was actually in the "acceptable range".  With my old liver, I would consistently see platelet counts of 60-90k.  (Normal is 150k - 400k).  I don't ever recall having a count over 100k since my liver had deteriorated.

My ALT and AST, both of which measure the liver function, were in the normal ranges as well.  This was also a relief after the previous weeks where there was some concern if the liver was rejecting because of some higher levels.  This was not the case today, phew!

I did get an e-mail later in the day where I was told that my Prograff levels (Prograff is the drug that prevents rejection) was very high and this can sometimes cause headaches.  I was instructed to skip my evening dosage and the dosage the next morning and then resume with 1mg less (so 6mg in total) of the Prograff.  I'm going to follow the doctors orders and then go back in on Thursday, 6/23 for more blood work and hopefully, I'm back in line with where they want me to be.  I don't think I should be too concerned here as they told me there is some gaming of the levels that occurs with all patients.  They also told me I needed to take another magnesium pill as I was low in magnesium (usually due to the Prograff).  This will take me to 4 total, 2 in the morning, two for dinner.

Now, we know you're mostly reading because you want to hear about the staples and see pictures, right?  Well, I have 50 staples in total (I keep wanting to sing 50 nifty United States and 13 original colonies....).  I keep wondering if they have the staples in packs of 10 or packs of 25.  I mean, 50 is such a nice even number.



Today they had decided to remove half of them, so the pulled roughly 25 out.  There were a couple that were on my old scar from when I had my kidney removed in 1987 so they were more painful and I had her leave them in until my next visit, at my request.  Why pull staples today if I can delay them until next week!!!


What exactly are you looking at?  See below:


Tuesday, June 7, 2016

6/7/2016 - The Before and Afters - Scars & Staples

Prior to my transplant I had some pretty awesome scars.  Most were from the Wilms Tumor removal that was attached to my right kidney when I was 7 (or peripheral operations for it).  Then, when I was found to have Basel Cell carcinoma, they had to remove several moles.  I digress, the point was to set the expectations of my "before" shots so then you can compare with my "after" shots.  

Either way, lets just say that I often make people uncomfortable when I play soccer shirts vs skins or when I'm in a swimming pool and it will likely be even more so now.....of course it doesn't bother me in the least and usually makes a fine conversation starter or I can kill conversations.

Example of a conversation starter:
Random A: "Wow, that's a huge scar...is there a story behind it?"
Me: "Kidney taken out from cancer when I was 7"
Random A: "No kidding, hey, I had x, y, z cancer and so did my friend...."

Example of conversation stopper:
Random B: "What the hell happened to you?"
Me: "Gang fight in Florida, I was slashed pretty bad." [Flaring my nostrils when talking]
Random B: "That sucks" [Backing up to pull a fade away like nothing ever happened]

<<Insert Before Pics, will hopefully update when I can locate them>>

Obviously thrilled, but you can see part of the scar and staples (50 staples in total in addition to internal "dissoluble stitches")


You can see the overlap of the scars the tried to keep at a minimum.  This was after discharge and the drains had been pulled out (Gauze covering drain holes)
What's under the gauze you wonder?  Oh, I'll show you that too....it's where a vampire bit me


I'd like to say they shaved my chest, but I'm not really that hairy so they didn't do much there. They did shave my left armpit and my nether-regions.  Actually not sure why unless they just like to mess with me because the foley they could have put in either way. (Don't click on foley link while eating).

Saturday, June 4, 2016

6/4/2016 - The White Discharge

As gross as the sound of that is, it made me laugh.

On Saturday June 4th, I was slated to be discharged (read the previous post).  I had blood taken during the 5am blood-work checks prior to residents rounds, to see what my liver enzyme and liver rejection levels were.  Both appeared ok but they did tweak my pill list to add another milligram of Prograf (one more pill, isn't the end of the world when you're already taking so many),  The attending Physician made rounds and signed that it was OK for me to head home.  Even though he did this early in the day (~9am), I knew it would be after 3pm when discharged.  Turns out, it was actually 7pm and right in the middle of the shift change for any of the 12 hour staffers (which is many of the SICU folks who were caring for me).

I still was able to have all 3 meals in the hospital.  We were joking one day, because I ate what my good friend Blair referred to as "gray beef" for dinner.  I think I was making them sick but I was so hungry I just shoveled anything in my mouth that I could.


ICU policy states that you have to have at least two viable IVs in at all times in case things go bad.  The very last step of discharge is to pull the IVs.  I had a couple of the usual needles in and then they had the gauge a Hi-C juice box drink straw sized IVs.  In these cases, they're long plastic tubes in your veins and they literally leave a hole in your arm or neck or wherever they're pulled out.  You can see below the arm hair they took off then they pulled this guy out.  Felt super good after it was out though!


Keeping the hole under pressure and elevated to make sure it's not gonna bleed.

One of the harder things that we had to do was pull off my wedding band when I went under.  I really wanted to keep it on but two reasons why they did not allow it.  1)  Your hands swell when you have all this trauma and they pump you full of fluids and 2) They want to scrub you in and make sure no germs are anywhere on you.  So, after the swelling was down and I was ready for discharge, the Ladies of the ICU (the wives of the many men in there) would all wear rings around their necklaces.  It was like the Bad Luck Club (my twist on the Joy Luck Club).

Luckily, she agreed to marry me again and I got my ring back

Ring back on, and back down to my weight from Senior year in High School, 180lbs.  

Also saying goodbye to my green morphine button.  I could push it every 10 mins, it would push a drug drip right into my mainline.  It was pretty good, helped relax me.  I liked this much better than the other narcotics they would give me later that made the room feel like it was a giant moving ceiling of Tetris blocks.