Moving Forward

Somebody, probably many somebodies, have said that life is like a roller coaster.  We here at the Rampton house successfully fall in line with this thought, most of the time by no choice of ours.  When we last left you in November I was in the hospital in the middle of a series of treatments to fight organ rejection that I had been experiencing since about three months post-transplant.  Rejection is pretty common with organ transplant recipients.  I had never experienced it with my first transplant, but then the two transplant experiences themselves were almost as different as night and day.  Since rejection is fairly common, and most healthy bodies don’t want a new organ around the house, treatment is usually fairly simple and effective.  However, since I am THE atypical patient, the treatments have not been as effective as my doctors and Megan and I would have liked.  My liver function blood tests that I have checked three times weekly have showed signs of improvement throughout the various treatments, (treatments consisting primarily of different steroids and medications I’ve had infused while staying at the hospital off and on for several weeks) but remain high (which is bad).

The kicker came about a month ago when I woke up on a Monday morning.  I was in an incredible amount of pain down the right side of my abdomen, and could tell I had some sort of infection in my right ear as well.  The days leading up to that morning had been fairly normal.  I’d felt fine throughout the days with some fatigue in the late afternoon and evening.  So I was not really prepared for the shock of pain that hit me that morning.  Barely able to get out of bed and walk, I got up and Megan was already on the phone with my transplant coordinator.  She told us to head down to clinic right away to be checked out.  After a quick physical exam my doctor who has kind of taken the reins of my situation, Dr. Charlton, had me admitted to the hospital for further tests and immediate treatment.  Next thing I knew I was plugged in to every antibiotic you’ve ever heard of and maybe some you’ve never heard of, trying to fight what Dr. Charlton was sure was an infection, but what kind we just didn’t know quite yet.

For the next two days I basically slept and scared Megan and some of my nurses because I was so far gone.  There are things that I did that I have no recollection of.  I could tell you more about all of this, but I’ll spare you unsettling details.  (Just kidding, nothing unsettling, just funny really)  It was NOT funny at the time, however, but Megan and I laugh about it now.  Crazy stuff can happen when you’re body is receiving new medications.

Ultimately we found that I had Pneumonia and some various fungi that had developed as a result of the Pneumonia.  So my super low immune system showed its true colors despite our consistent efforts to protect it.  Over the next week and a half in the hospital much of the infections and the pneumonia had come under control enough for me to continue treatment at home.  Since then things have been fairly quiet apart from two additional weeklong stays in the hospital following another small flare up in my sinuses with some fevers that they wanted to watch and some intense edema.  When you’re immune system is weakened as much as mine has been (and showed with the pneumonia) the doctors take no chances, and I can appreciate that.  I don’t like going to the hospital, but at least there are amazing people there and my docs can keep close tabs on me.

So what does all this mean?  What’s the end game now that we’ve found that none of the treatments have worked has they should have, and have really only weakened my immune system to the point where I’m susceptible to basically any infection out there, many of which would pass through a healthy person’s immune system with no more than a cough?  Megan, my doctors and I have known for a little while now that my body just doesn’t want this liver for which we'd waited so long and fought so hard before receiving back in May of last year.  As each treatment came up fruitless, we began running out of options.  There was always something more that we could try, but how far do you push the body’s limits before you make the ultimate decision that it can’t and shouldn’t take much more of it.

With all that said, I have been listed again for liver transplant.

Hopefully the third time’s the charm, right?!  This news came to Megan and I not too shockingly, as I said earlier.  We began to put the pieces together with each passing treatment that proved ineffective.  So when we finally made the connection with Dr. Charlton, it was almost like old news.  It doesn’t really make the pill any easier to swallow by any means.  We are just anxious and ready to move forward.  The fact that I received the call early last week that my previously-scheduled Clinic appointment would run a bit longer than anticipated due to the fact that I’d be filling out all the paperwork and other fun things you get to do to be listed was a blessing in and of itself.  We have known that I’d need to be eventually listed, but thought that we’d have to wait a couple of months at least to reach this point in order to give my body more time to clear out all remaining infections, and that currently I was too sick to be listed.  But Dr. Charlton and his staff have agreed that the time to move is now, so since I need to be listed eventually anyway I say, “Sign me up Scooter!”

Emotionally and mentally, Megan and I are taking this pretty well, I think.  When it started to become apparent that a third transplant was the only option, Dr. Charlton put our minds at ease, assuring us that things shouldn’t be as bad as they were last time.  While we know that no one can guarantee this 100%, we trust him and everyone at IMC.  My liver numbers that determine my MELD score, or where I will be on the transplant list are already pretty high.  My skin is its beautiful sunset orange hue again, and some of the other criteria are elevated as well.  So we’re back in the boat of wanting to get sick again.  The sicker the better, because the sicker you are, the higher you are on the list.  The higher your MELD score, the sicker you are, the higher you are, the closer you are to getting another shot at living a healthy life, which we know will come.

I got a little bit of good use out of this second liver, but it sure didn’t want me to have any more than that.  I have still been pretty mobile, and have had some fun with Megan, Miles, and friends and family.  I’ve been so immune-suppressed recently that I haven’t been able to see anybody, really.  And the same quarantine-type lifestyle will continue to apply for awhile. 

My primary concern personally with a third transplant (and I can just see you all rolling your eyes while saying, “Alec that’s ridiculous!”) is the fear of sounding like we’re crying wolf or a broken record as we ask for your continued support and prayers and pass through what is bound to be a very trying time for our family.  We have been so amazingly blessed by the love of others it makes me wonder what I have done to deserve such an abundance.  Miles, I understand.  He smiles at you and immediately you find yourself running to find the nearest cookie just so you can give it to him.  And then there’s Megan, who does nothing but make your day and life better with the light and life she brings everyday.  I am in the best of company, and won’t ever take it for granted.

We continue to benefit from the many donations made to our family that have been invaluable in helping to cover the medical bills which seem to find our mailbox everyday.  We cannot express our appreciation enough for this help.  Many have asked us how they can help or serve us.  We have loved the meals and goodies that have been provided. Miles has been extremely spoiled by love, hugs, sugar and fun. We thank you for that. What continues to bring peace of mind are the financial contributions that we have received that not only have helped our medical needs but also our day-to-day financial responsibilities, as I have been unable to work for nearly two years now.  Your help is and will be a blessing beyond measure.   To donate money, you can click on the button on the right side of our blog that says, "Donate to the Rampton Family."  Or check out the "Go Fund Me" link on the top-right side of our blog, or on the link below if you would like.  We are incredibly blessed. We have all of you to thank for that. 

Click Here

http://www.gofundme.com/ozhrk4

Of course, an incredible way to help not only our cause as we await a third liver, but the causes of so many others is to register to become and organ donor if you have not already done so.  It will be a complex search to find the right liver for me, and wouldn't have to be so difficult a search if there were simply more registered organ donors.  Organ donation saves lives.

One goal we have always focused on as we've gone through our trials is to never stop living our lives.  My health may prohibit certain pursuits, but we are dedicated to not allowing liver failure to dictate how we live our lives, and how we plan to move on with our lives and our family. We want to have more children, and we want to go to the park and watch our kids learn from when they fall off their bike. We won't allow my health problems to stop us from living this life we have planned, and therefore we consider your love and support, both spiritual and temporal, to be blessings from the Lord that we will carry with us forever. 

Many ask how we make it through our trials with happy, positive attitudes and smiling faces.  I can assure you that it’s not always roses, Cokes and chocolate donuts inside the walls of the Rampton home.  We have tough times, but whoever said “Tough times don’t last, tough people do” was right, and we have been toughened and molded by our trials, and made it out of each of these trials better people, because we have all of you to lean on, and we have each other to cry to, to smile with and rely on as we go through it all.  So we will continue to move forward everyday, and will never be defined by a trial, but define ourselves by how we deal with those trials.

Slideshow!!!

Megan worked long and hard on this slide show that does an amazing job of capturing what we've been through as a family and how you have all been such a blessing in our lives. Megan did her best to compile photos of you all, but unfortunately wasn't able to round up everyone. (We can only Insta-Stalk so much) We are thinking of you and are very grateful for you even if your mugshot didn't make the cut. PLEASE BECOME AN ORGAN DONOR!!! Yesutah.org

Click on link below. Enjoy!

Rampton Strong

Room Service Please

Today I'm back in my Hospital Time Share for a little R & R - Restlessness and Racket - and an overnight stay to continue treatment for the rejection I've been going through for the last couple of months. In fact, I'm back in my original suite from pre and post-transplant - Room 1021! I spent about a month and a half in this room back in April and May and you know the place hasn't changed a bit! Home sweet home! I may sound sarcastic (and I am being sarcastic...slightly) but many positive life changes went down in this room. 

Lots of good memories here. Lots of tough memories as well, but I spent a lot of time looking out this room's window, as I'm doing now, and found a lot of peace amidst a lot of uncertainty and anxiety. 

So my stay here should be brief, and hopefully these treatments/infusions/not big deals side effects-wise will be effective and I can get back to life. A life that lately has seemed like that little fake rabbit they put on the rail at the Track, you know? And I'm that grey hound, the one that wins, of course, but constantly chasing that goal that seems just out of reach. Sorry to go deep on you there...I think I need some food. 

Anyway, speaking of life, our's has been pretty uneventful lately. But here's a quick recap. 

Miles and Bode sat in a big Digger's Scoop thing on a walk recently. 

We were all New York Yankees for Halloween in honor of Derek Jeter and his retirement - Farewell Captain. 

Miles and Megan had an amazing trip down to Newport with Grandma Diane and got some much-needed beach time in. Miles also got to see his cousins and still talks about his best friends naming all of his cousins by name. Then he asks if we're going to the hotel, meaning the hotel in Califonia (not THE Hotel California, hashtag Eagles) to which I always have to say No, just going home. Maybe we need a guy in our bathroom that hands out towels or a concierge by the front door so Miles' obsession with hotels can be somewhat appeased. 

Grandma Janice and Papa Vince were able to witness the talent of tomorrow in Miles' preschool class' Halloween program. Epic is the only way to describe it really. 

Above all, we have just been enjoying our time as a family. Watching shows, taking walks, playing trains and Legos, snacking and drinking Hot Chocolate (which Miles pronounces with a thick accent that I can't decide whether it's from New England, New York or Chicago: Hwat-Chwak-o-leht), family chases with Bode in the house, eating pasta or helping Megan build bookcases and bake muffins. We keep busy being happy, and life is treating us well. 

I'm just waiting to have a line placed down a vein in my neck so for now I'll just say, Laters. 

Prayer Works

There are so many people who have blessed our lives in so many different ways as we have been fighting my health problems, and it's definitely been a fight. The other night we were complimented by one of our neighbors while Trick-Or-Treating (or as Cosby put it, begging) with Miles - pictured below in his costume. This neighbor is retired but worked in the medical field with countless patients in our shoes or similar situations. He told us, "You've been through so much and been such a fighter." I thanked him and let him know I haven't done anything alone, to which he replied, "Well you epitomize what I always tried to teach my patients in recovery: If the fat lady shows up she better have her fists raised ready for a fight!" 

Lately I've thought a lot about how all of us have our battles. Mine is pretty much common knowledge and that has been such a blessing because you're able to rally support for your needs, and as has been our goal as a family, hopefully help someone else who may have a more private battle to fight.  But not everyone's struggles are so public, and it's important for us to mindful of that everyday.

I have loved the #RamptonStrong motto. It started as our cause and the Standard we used (and continue to use) to get over every hump and hiccup we've encountered, and have found that it also stands for more than that. As we have been able to overcome obstacles with the help of others, #RamptonStrong has kind of become that same Standard for others to fight and continue fighting personal, or maybe not so personal, trials. I talk about this not to boast of anything we've done, because as I said, alone we have done nothing, but more to say Thank You, and hopefully everyone knows they can also come to us for any help they may need...except heavy lifting. Not because I'm lazy (though I am that) but still recovering from that one crazy surgery I had. 

With all that, I want to talk about someone whom we still haven't even met, but has given us so much strength through so many difficulties. One of our nurses from the tenth floor at IMC (shout out T-10!) has a son. Her name is Ashley and her son is Aiden. Shortly before I received my transplant in May, Ashley had begun showing Aiden our blog and letting him know about our story. He read of our difficulties in getting a liver and how sick I had been while waiting for so long. 

You know, there's just something about kids that helps everything make sense. Maybe it's that innocence thing, or that their minds have yet to be cluttered with all of the nonsense in the world. Maybe it's because they entered the world being raised by a heart beat, so that's where they first go for answers to their questions. Whatever it is, Aiden is no exception, and follows his heart, and his is a super tender heart.  

While we struggled in the hospital, Aiden wondered what he could do to help us. The night I finally received word that I would get that new liver (and that it would be viable and actually be transplanted) Aiden did the greatest thing that his heart could tell him, and that was to turn to God. Something inside him spoke loud and clear to his heart, and that was to ask his Heavenly Father to bless our life and grant us this life saving organ. And as God would have it, the organ came that night.  

Now many of you, if not all of you within the sound of this blog's voice, have prayed for us and continue to do so. We have been sent videos and voicemails of young children praying for us by name, and it has brought tears of joy to our eyes and gratitude for a Heavenly Father that knows us and blesses us through prayer.  We are eternally grateful for this, and as each of you have assured me that you are praying for us, I know that it's true and I know that it works. 

Aiden's mom Ashley is an amazing soul. She has raised two wonderful boys (the other is named Rory) through several difficulties in her life. As far as religion goes, she has allowed Aiden to make his own decisions of whether or not he should go to church each Sunday or how often he should pray. She has allowed him to follow that heart of his and it's not only been a blessing for her, but now for us and will be for so many others who read about his selflessness and spirit. I talk about Aiden's upbringing to point out that prayer hasn't always a major part of his life, and yet despite that, he chose to follow the Lord's prompting and pray for us. 

Aiden, I'm talking to you when I say that

PRAYER WORKS. 

God hears us.  He wants to hear more from us, and He will bless us and answer us in the way He knows it will benefit us most.  Sometimes it takes a child's simple, innocent prayer to remind us of that.

I love prayer, any prayer, but don't we all get a little smile when a child is blessing our home for safety at night? I love it when Miles can finish an uninterrupted blessing on a meal without wanting to devour his plate before he's arrived at amen. And most of all, I love hearing a child put their own feelings aside and ask God that another's life be blessed and comforted during hard times. 

After the good news of my successful transplant, Megan wrote about our experiences through the surgery, ICU, recovery and so on. Aiden followed along with Ashley and then, as anybody who follows this blog knows, we just dropped off the face of the earth. In the meantime, Aiden has received updates from his mom as I have gone through various hospitalizations and recovery hiccups. Wanting to be of more help, Aiden kicked his game up a notch. He read about the fundraiser that was held for us last year, and the funds we've been able to raise to help cover our many medical bills. This inspired Aiden to start his own fundraiser for us. Aiden plays hockey, and he's a regular Alexander Ovechkin, he scores so many goals. So Aiden figured he'd get a collection going with family members and teammates' parents and anybody else who wants to contribute, and ask for a dollar donation for every goal he scores this season, and then he'd donate all the money to us for our medical bills! Then we'd be able to meet up as well so he could meet us and give us the money person! Not only has he been doing this, but he had his mom help him put #RAMPTONSTRONG on his hockey helmet so that people knew or could find out what his goal was. 

During one of my more recent trips to the hospital, Ashley gave me a letter from Aiden where he talked about his plan. I could feel his enthusiasm and the spirit from his words. At first I thought, what kid under the age of ten thinks of something like this? I know I never would have, and don't know that I would now despite all of the good that has been paid forward to us. Then I just started to cry as I read this letter over and over again, thinking of Aiden's selflessness and desire to do good. Then I couldn't help but feel overwhelmingly blessed for everything we have been given, not only through these last few difficult years, but for everything we have been given, both good and bad, that has shaped us and made us better in the end. And it all started with an innocent prayer. 

I'll reiterate that we have been blessed by so many and in so many ways. Aiden is not alone in blessing our lives, but I felt like his was a story that needed be told. It highlights for me the need the admonition of Christ:

 And said, Verily I say unto you, Except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven.

 Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven.

     -Matthew 18:3-4

Life can get hectic and clutter things. Every now and then we need to stop and simply talk with our Father in Heaven. 

It works! We are a testament to that. 

Thanks Aiden.

Super Snappy Quick Update (Photos Later)

 I feel terrible!  As if posting on a blog wasn't difficult enough for me to do, dabbling in other forms of social media that are quick and slick hasn't helped.  I know I have a few people (shout out to T-10!) a little perturbed that I haven't posted in what seems like decades.  Megan's posts during my second transplant process - first update: I did get my second liver transplant back in mid-May of this year - were beautiful, informative, and just brilliantly done really.  They were written in the form of letters, more like sonnets really.  I could go on but just go back and read them if you haven't yet!  Time well-spent, I promise.  I love that girl so much it makes me so happy to know how perfect she is for me.  Anyway, I'll do a Megan post later.
I did try to post about my transplant experience a couple of times soon after being released from the hospital, but this transplant was much different from my first, and really toyed with my emotions.  I felt anxiety and fear like never before in my life.  I fought bouts of depression, another thing I'd never experienced for my self, but only seen others fight through it.  So as I sat down to write, each time I'd get as far as my ICU experience (which was probably the most traumatic part of the whole deal) before I started reliving the experience so vividly that I'd have to stop.  So now, five months later, I'll give this update, albeit super Reader's Digest version, but hopefully it helps.
As I said, and as you know from previous posts, I received my second liver transplant after a really tough year of dealing with end-stage liver failure and all that comes with that.  In April of 2013 it all started with some funky liver levels, some abdominal swelling, and some bad kidneys.  After about two months in the hospital, I was fixed up enough to go home and continue fighting my original liver disease, PSC, that had returned to take my first transplanted liver.  At home I grew weaker everyday and lived on popsicles and a feeding tube through a central IV line in my chest.  The bag that held all the goopy mixture of vitamins, minerals and proteins and I became fast friends, but not in the traditional "friendship" sense.  It liked me and I hated it...but I knew how necessary it was to have.  I just couldn't keep any food down, so that bag kept me alive.  Changing it everyday was just a drag though.
Once my liver finally decided to really call it quits, I was admitted to the hospital.  That was in April of this year.  I can't explain to you in words the peace that I felt in the hospital for the three weeks that would follow up until my transplant.  Each day I would go for walks and sit on blankets on my room's window sill, and just look out at the east mountains, thanking my Father in Heaven for all of my blessings, and to even be in the position I was in, waiting for another life saving organ.  I was grateful for whoever would be making the ultimate sacrifice so that I could live, because I knew that the liver was coming, and that I would live.  About four or five (others would recall better than I) times, opportunities for a new liver, raising hopes and optimism levels through the roof.  But they all passed us by for various incompatibility reasons.  The livers would be too large, too fatty, too ridden with other frailties.  But I was never bothered by these "missed" chances.  I knew that the Lord was preparing the best option he could for me, and it brought even more peace to my heart that Megan knew it each time too.  It was funny when I got the call for the liver that would actually work.  Each time a liver wouldn't work there seemed to be a lot of hype and heavy prep work to be done.  My room - good 'ol T1021 - would just get hoppn' with docs and nurses and aids and people I'd never seen before, all getting me ready for the surgery.  Then once the chaos would reach its peak, the news would come that the liver wouldn't work.  I could tell how dejected and horrible everyone felt, and it really showed their love for Megan and me.  I felt the need to console others more than I needed to be  consoled.  But then, the evening of May 12th around 8:00 PM, the nurses had just done their shift change, and I would have an awesome nurse that I remember having at times during my first liver transplant process.  So we started laughing with her and saying how we were gonna have a party that night and Megan had all these snacks and we were gonna watch a movie so if she ever needed a break from her shift she could come chill!  It had and has become a standard ritual we have with many of the aids and nurses on T10 (shout out T-10!).  So after making all of our party arrangements, Megan and I were just kind of hanging out and talking.  Megan left the room for a minute, and my nurse came back in with some surprising news she thought I'd already heard.  She was going over the evening plan and just happened to mention, "and it looks like we're getting you ready for surgery, and..." right in mid-sentence!
"Wait, what?" I asked.
"Did no one tell you?"
"That's a pretty messed up joke," I said jokingly.
"No, no joke!  We have orders to prep you for surgery.  I can't believe no one told you! I feel terrible this is coming from me!"
I laughed and said, "Nah, no worries!  It just sounded made up because usually I'm signing forms and  everything, going through the standard drills, you know?  But that's great, let's do it!"  I still had a hint of skepticism to be honest.  So many prank calls make you hesitant to pick up the phone again, I know from experience making the prank calls, we could only get through maybe twice.  Anyway, the prep started and I just kept getting further and further along in the process that I felt well this is finally it.  I couldn't believe how long we'd waited and how much we'd been through, while still being mindful that many others in my hospital slippers had gone through much worse.  But the transplant was finally coming, and the surgery started I think around 2:00 AM-ish.  Didn't check my watch before going under on the operating table.
Now you can refer to Megan's letters to me to know what went on during the surgery and how complex it was.  I nearly lost my life, but will forever be indebted to my doctors and my Heavenly Father for all the miracles that came together to bring me out of that OR breathing and alive.  Something along the lines of 12 hours of surgery, a cardio thoracic surgeon who happened to be next door when my surgeon Dr. Alonso and Dr. Fujita at her side needed a chest cracked open, seven full-body blood transfusions, and tears of prayer from Dr. Alonso begging me to stay alive to be Miles' daddy.  I'm a pretty atypical patient, but all of my nurses and doctors, both from the clinical and the surgical side, aren't typical clinicians of people.  I felt and feel so incredibly loved and well-cared for by this group.  Some have become fast friends of ours, people we love and admire and actually hung out with!  I think it helps that I have Megan on my team because, she's kinda the Jordan to my Pippen.  She instantly catches your eye and you're in love with her from the beginning, and I just try to keep up and still sneak on the Dream Team's bench.  Bottom line, we feel so loved and try to reciprocate that love and so far it's worked out.  It's taught me a lot about how far that attitude goes in life.
Wow this post is not the "Super Snappy Quick Update" I promised.  Sorry.  I press on, read along if you choose.
Let's just say I woke up from surgery feeling pretty messed up.  The ICU was super tough on me, and recovery in the hospital was just tough.  In the ICU their main goal is to get the patient up and moving so that physical and mental functionality can set it its natural course.  I know how important getting up and moving is to recovery, but I couldn't believe how much I felt all of the trauma I'd gone through while I was out during surgery.  They want to get you up and moving, and it seems like they will beat that desire into you.  I know it seemed worse than it really was, but I developed a few enemies down there, so there went all that "you get the good you give" stuff I guess.  I just couldn't get moving since I was in so much pain and had gone through so much.  I literally felt like I was in a MASH unit while I was there.  Finally on my last day in the ICU, I had kind of come around.  It took me having to do lunges and squats while vomiting profusely and my naked hind parts hanging out for all to see in order to prove that I could leave the ICU.  When push comes to shove I'll do what I have to, I just didn't feel like it.  Getting up and staying up to do this took a tiny little note placed on the other side of the room.  It was from Miles and simply said, "I (Heart Sign) Dad."  I fought the tears and the vomit until they said I was good and that I could go back up to T-10 to continue my recovery. I was so relieved!   I was able to back up to my exact room that our amazing nurse Tsering had set up for us.  I was so glad to be past the ICU, but recovery still proved to be super taxing, now emotionally.
I think that my first transplant was a blessing and curse.  Looking back it seems that it was so easy!  I was sick for a couple of weeks, transplanted, out of the ICU in under a day, and out of the hospital in a week.  I was playing golf and biking and back to normal activity within a month.  This go-around, I had all the difficulties listed above and then some.  But from a recovery standpoint, I still had it in my head that it was going to be a cakewalk.  "As soon as I get that liver, I'm going to be doing all those things I did before, that I see other people in worse shape than I was," I would think constantly.  I didn't, however, anticipate the tough surgery, or the fact that having been so sick for so long, recovery would be such a beast.  I started to get down on myself, that I wasn't doing enough or working hard enough, and every day in the hospital was a sign of weakness that I just couldn't accept for myself.  It took a lot of encouragement from Megan and all of the people who had helped me so much pre-transplant to get out of the funk and get my head focused in the right direction, the right direction being to basically accept the reality of all that I'd been through and to push forward despite my unrealistic expectations.  I remember going for a walk down on the hospital's main level and finding a chair to sit in when I broke down into my first ever panic/anxiety attack.  I called Megan and asked her to come find me since I was so dizzy that I couldn't find my way away form this spot I'd sat in 50 times before.  Then by some sort of miracle the head social worker of the transplant team walked by and stopped to ask how I was doing since I was visibly shook.  I was talking to her when Megan arrived, we set some goals for productivity, and that was that.  It still wasn't super easy after that but her counsel and ideas, along with Megan's counsel helped so much and it was such a blessing that she just happened to be walking by.
I think I was only in the hospital recovering for a few more days than I'd been for my first transplant, but they were tough.  They were also such a blessing though.  I was able to learn and connect with Megan, whom I'd been married to for nearly nine years, in ways I'd never been able to before.  I was able to see and feel emotions that so many people struggle with on a daily basis, and grow from it.  Easy for me to say now that I'm home!  But in all seriousness, I value these experiences, and realize that the hardships we go through in life are never insurmountable, and there is always, ALWAYS someone who can help us through one trial or another.
Once I got home life went on, but now I was eating!  I was eating anything too.  I'd fallen in love with the hospital's Chicken Pot Pies, so when I got home and looked at what food we had, I saw a frozen Pot Pie and just cooked it up.  I have no idea how long it had been in there, but I ate it, and it was so good!  Megan got back from the store with stuff I'd requested and man...you should try going without any oral food for over a year and then just being able to start eating.  CRAZINESS!  Actually don't try that that.  Just take my word for it, it's awesome.  Recovery continued slowly, and I still had a few struggles with keeping perspective.  Since they had to perform a Sternotomy to complete the transplant safely, my chest was (and still is) really pretty tender, so much of my physical activity is still very limited.  But life became as normal as it could.  I was able to make the second half of our biannual Beach Trip to North Carolina, which is such a blessing in and of itself that my Grandma Bonne (Bon Bon to me) and Grandpa Ted provide for the Simmons family.  I had completely taken that trip out of the equation of my future plans but my two main dudes, first Surgical PA Benjamin and secondly Dr. Frech - who may or may not become Miles' Godfather - both gave me the clearance to go for the second week of the two-week trip, noting that emotional healing is just as, and at times more, important than physical healing, to which I couldn't agree more.  But the Beach was a blast and a blessing like it always is, and truly helped my healing process along.  As my strength built we went on hikes as a family, beautiful canyon drives...basically anything to get out and rejuvenate and live.
With liver transplants, you typically are heavily medicated for about three months with a high dose of immune suppresant drugs to help your body fight rejection of the new, foreign liver.  After those three months, you come off of those drugs, thus helping your immune system to not be so compromised and weak, and you are able to come out of the three-month, post transplant, "quarantine" phase.  During quarantine, you have to be super cautious of contact with others who are sick or scenarios where you could pick up an infection of some sort.  That's why I used a whole bag of wet naps sanitizing my airplane seat going to the Beach, and why that trip was a big "if" in the first place.  My time period to come off of those drugs was near the middle to end of August sometime.  After that, Miles would start Pre-School, Megan would start working more, and I would finally go back to work after being away for almost a year and a half.  My work, Bonneville Mortgage now Bonneville Real Estate Capital, and co-workers are some of the best people and friends someone could ever ask for.  In times when many people were struggling to find work, Bonneville sacrificed and double-timed it a lot for me and have gone to great lengths to keep me on staff.  They have been such a blessing to our family, and in August I was excited and getting ready to go back to work.
Before life went "back to normal" so to speak, we decided to take a quick trip down to San Diego to get some sun and beach in, and to see Megan's older brother Ryan, his wife Caroline and their kids.  They were so incredibly accommodating and really showed us an amazing time.  Even with the less-than-stellar news that would come mid way through the vacation, they showed us so much love.  It was just super fun!  Yeah I said less-than-stellar news.  Before we left, I had still ben getting my routine blood tests done.  I go to the lab at the hospital three days a week to have all of my liver levels and other tests done to make sure my new liver friend is behaving itself.  The Monday before we left, the liver started to misbehave a little bit.  Levels began to elevate slightly, and it started to concern my docs a little.  I explained we had planned this trip and wondered if it would still be ok to go.  I told them that it would totally fine if I didn't go, health is more important, all that, but they said I'd be ok to go, but to just get labs checked on Wednesday morning, which was the day we were planning to leave.  So that's what I did, and we left.  We knew something was up with my health, but didn't think anything of it until Friday around noon when I got a call from one of the transplant coordinators.  She wasn't my coordinator (every patient is assigned a coordinator who keeps everything in order and all communication goes through the coordinator - mine is Sue and she is a literal angel on earth - so amazing!) because my coordinator was out of town at the time, and since it was someone filling in she didn't know I was gone either.  We were planning on returning from our trip the following Wednesday, and the woman on the other end of the line started talking pretty quickly, which I wasn't ready for.  Megs had gone with Ryan to grab some sandwiches while I waited in the car with Miles.  The coordinator started saying how my lever levels were really elevated and she was asking me if I knew that or if I knew how high they were.  I didn't know how high they were, just that they were kinda creeping up before we left on the trip.  She then started saying how I needed to go in for a liver biopsy on Tuesday and have all sorts of labs done.  I let her know that I wouldn't be back in town until the following Wednesday and that I could do it probably Thursday.  She seemed a little put out by this news, almost angry, which I thought was surprising since it was my health we were talking about.  I got dizzier with each exchange in the conversation, and she said they get me scheduled for a biopsy once I was back and to get some blood labs drawn while in California which I agreed to, no big deal.  Anyway, my head was spinning.  I had left the car with Miles to get some air and walk midway through the phone conversation, so I took him back after hanging up and found my way to to driver seat.  Once Megan got back to the car, we started to head to the nearby beach we had planned to go to, and I told Megan about the call.  Needless to say it put a little damper on our vacation.  Thoughts of what it could be just flooded our minds, primarily we worried that the disease was back, which would obviously necessitate another transplant and who knows what else.  Having gone through what we just did, and coming out of it, it was a little hard to enjoy the beach that day.  Good talks with Megan and with Ryan and Caroline eased the tensions in my mind, and Megan's as well though I can't fully speak for her.  We knew there was nothing we could do, and that projecting problems that weren't there yet did no good.  I started feeling sick and couldn't eat very well.  Megan's mom Diane offered to fly me home early but I just couldn't miss this time with family, nor could I leave Megan to drive Miles home alone, even though she basically did when I laid down in the back of the car when we left and didn't spell her from the driver's seat until Nephi!  The news may have put a damper on the trip, as well as me getting sick, but it was still such a blessing and so needed.
I had the biopsy done Thursday morning early, and before we even had the biopsy results, my blood test got me admitted to the hospital Friday morning.  I was in for two weeks.  Our worst fears of the disease returning were dispelled by the news that I was experiencing moderate rejection.  Not good news my any means but, treatable.  And so the treatments began.  We first tried a steroid called Solumedrol, which worked pretty well, but then my numbers wouldn't continue to drop past a certain point.  Then we tried treatments of Thymoglobulin, which also worked to an extent.  I went home for a week with these results to see how they would continue to work at home.  When things didn't keep improving, and I got really weak and sick again at home, I was readmitted for a week to try a treatment Plasma Faresis where they take the plasma out of my blood, spin out the waste, and replace the clean plasma back into the blood stream.  After a week of this I felt pretty good and we decided to wait and see what happened.  Different treatment, kind of the same story.  Levels dropped only so far then leveled off.  Now I am at home feeling pretty good, and each week I go in for an infusion treatment of a drug called Solaris.
The good news is that I have tolerated all of the treatments well.  Things seem to be going in the right direction.  The bad news is if and when the rejection is cured, we may not know for sure which of these treatments was the real nail in the coffin, but I agree with my Docs' methodology that we gotta go fast and hard to get rid of it, then sort it out later.  Another not-so-great piece of information is that once we started these treatments, I went back on many immune suppressive meds.  Not only am I on the original offenders that you take post-transplant, but on a whole grip of others, plus additional meds to help control symptoms from those drugs.  I think every day I take at least 45 pills.  So that's a kick in the teeth.  But taking the is easy, but because of them I'm back in the "quarantine" phase, to the max this time since my white blood count is dangerously low.
It's somewhat discouraging, but we are pushing forward, always with the mentality that we are not defined by my illness, and that in the whole scheme of things, this is just a brief little struggle, and it will pass.  We are forever grateful to all those who pray for us and support us in so many countless ways.  You have all helped us to see these trials through a different lens, and we can only hope that we can sometime, either in this life or the hereafter repay you somehow for giving us life and happiness where it can be somewhat difficult to find at times.
Megan has been preparing an amazing slideshow that includes many of you, but most importantly shows how beautiful the lessons and blessing we have gained from our experiences.  She will finish it up and post it soon.  That's what the radio and television people call a tease.  I got a sneak peak, verdict is in, it's awesome and you will cry.  A good cry.
Much love.

Out of the ICU

ICU Day 4:

Dear Alec, you are on your road to healing.  Today, you busted out of the ICU and are moving up in the world.  Literally, you will be moving up 5 elevator floors out of intensive care and back to great care. I wasn't there today at the ICU with you because I was afraid I had gotten sick.  It killed me to not be there with you as told me the night before that you wee having strange dreams, anxiety and emotional distress.  I am thankful that my dad was able to take my place there and give you comfort.  I received a text from him later that day telling me that you were moving out of the ICU.  "Just moved him. Going to leave.  He is very tired.  Doc said that he came off oxygen faster than any patient he has ever had from a transplant.  Said he is doing great.  Liver is doing great.  Said Alec is very very strong and a real fighter.  Said you should not worry about your cold.  Washing hands is most important but he said Alec has enough white bloods cells he can fight a cold. You should rest anyway today."

I called you Alec to find out what room they were taking you to but you didn't know.  So, I called up to our floor and Cathy answered the phone. "Hi, Cathy, this is Megan Rampton and I am just calling to find out where Alec's room is.  Is it on the Eastside? (That's the best view)"  Cathy: "Not only is it on the Eastside, but we saved his old room for him and we rolled your cot back in there too."  (I love that it is known as "my" cot now.  Because its really the P.A.'s Christy.) These people here are incredible.  Sooo much love is found here.  Thanks T-10! 

Alec took a "selfie" He's still hopped up on weird pain meds as you can see from his eyes, but look at that beautiful color!

 (we are trying to get this kid of his binky, but he just woke up from his nap, so don't judge. Yes, he's almost 3)

Love you Alec!