Pearl Jam - Ten | Track 3 - "Alive"

One day recently in the ICU, I remember being serenaded by our iPad as Megan played Pearl Jam's song "Alive" - which is on the of the greatest songs from the greatest albums of all time, and taken on new meaning in our lives over the past seven years as time and time again through the hands of gifted physicians, medical personnel, the prayers and thoughts of hundreds upon possibly thousands, and of course the guiding hand of God Himself, we have found a way to continue living. After another massive set of surgeries, I am alive, and received my third liver transplant. Words can't express the joy we feel at this juncture as all tests and signs are pointing in the positive direction that this is a solid, viable liver transplant. 

Megan is currently penning a more detailed account of our transplant experience, and getting down on paper is a Herculean task in and of itself, so you can imagine the difficulty she is faced with in doing it all justice. I just thought I'd write a quick note to say we made it. The surgery/surgeries were once again very intense, and yet we are "Still Alive" and now beginning to thrive as life once again takes on a whole new meaning. 

Please stay close to our blog and any Social Media groups that are affiliated with our continuing recovery efforts, and know that each of you are loved for the countless demonstrations of faith and love on our behalf. 

Miracles are real, always remember that. 

Much love,

Alec, Megan and Miles Rampton

Liver Transplant Update

Thought I'd post a quick update on where we stand in the liver transplant process. I'm high on the "A-List" or list of candidates with A Positive or negative type blood. With a liver transplant, the blood type doesn't have to match exactly. I can receive a liver from someone with A Positive blood with my A Negative blood type. I am also high on the list in the state and in our region, which includes Utah, Nevada, Arizona and California. 

So we are in a good position and offers should come any day now.

I feel relatively good and strong as well, so this should serve me well during and after surgery. None of this would be possible without the help that so many of you have provided, both spiritually and temporally. The donations we have received from so many of you have been an invaluable resource to help with the countless prescriptions, tests, and clinical visits we have been through and will continue to go through post transplant. We thank you from the bottom of our hearts!

As I said I am feeling pretty good, all things considered. I get tired easily but am still able to kick the soccer ball around with Megan and Miles occasionally or go for a brief walk down our street. Then I usually need an hour-long nap, but it's worth it! 

I thought I'd include a few photos of my current physical appearance just to give you an idea of what a failing liver can do to your body in its final stages. I don't think they're too graphic (at least I hope not!) but hopefully it gives you an idea of what we're fighting for here. 

Probably the most graphic picture of all - My Face!!! Kidding aside, the yellow hue of my skin and the whites of my eyes (which you can see another example of in the photo below) is caused by the amount of bile that builds up in your body when it can't be properly filtered through the liver ducts. 

My face is not normally this elongated and narrow, but I've lost considerable amounts of weight from my liver disease. I did trim my unibrow recently...don't know if you noticed. 

These two photos, above and below, are what I believe to be the most telling of advanced liver failure, and honestly the most difficult to deal with. With a diseased liver so much is unable to be digested properly and ascites develops, as well as the loss of muscle mass. I've never been a massive person but could always put on good lean muscle fairly easily. When the liver can't properly process proteins and nutrients, your muscles just go to pot, and being unable to gain muscle leads to the incredible fatigue that I experience on a daily basis. Ascites (uh-sigh-tees) is basically the buildup of fluid in the abdominal cavity when, again, the liver can't process it properly through the scarred and damaged bile ducts. It makes you look (and feel...maybe...never experienced it) pregnant without a beautiful little surprise inside. Occasionally when the ascites gets out of hand I have to go in for a procedure called a paracentesis, where you are numbed in an area on the abdomen then stuck with a tube that uses a vacuum type thing to suck out as much fluid as is safely possible. These usually bring instant relief to the back pain caused by carrying around all the fluid weight in the front using a back that has been robbed of any and all muscle, and it's not really too painful of a procedure either, just one of many that are needed to sustain energy and life while waiting to climb the transplant list. 

Side profile. Not much fun, but manageable. 

When the fluid buildup in the abdomen becomes a bit too much to handle, the fluid moves south to the legs and feet. I notice it in the feet and ankles first, usually, then the legs follow. Either way I lose the chicken legs that I once had. I used to not care for my chicken legs, but miss them dearly when this swelling and edema sets in. Lately this swelling has caused me intense pains in my right knee joint, so I guess that's just a bonus feature. Ice and heat help it temporarily, but not much else really helps it. As long as I can get from my bed to the fridge though, I'm ok!

Here's a close up of my swollen toes and right foot. You can see in my nails some weird discoloration that is normal for end-stage liver failure. It doesn't hurt at all, and I have it in my finger nails as you can see in the photo below. It just kind of looks like I slammed my fingers in a car door. I did not do this. Crazy thing, I had this finger nail condition before my second transplant and it seemed that within hours of receiving that second liver the discoloration was gone. Miracles! 

Every transplant experience has been different for us. This time around I developed some strange skin issues like the small blisters you see on my hand. Again you can see the discolored finger nails. Occasionally when the ascites and edema gets super bad, it extends up to my hands and face. This is not the case here. I have had to go through several infusions for various deficiencies that my liver has caused. I go in for a boost of Magnesium or Potassium when I'm low in those areas. I receive albumin and diuretic infusions when my edema gets out of hand. Sometimes I'm out to receive infusions 2-3 times per week, and a session ranges anywhere from 2-4, or sometimes 6 hours. I don't usually have any issues with these infusions, but the other day I was receiving an infusion of Albumin, and halfway through (without my nurse or myself noticing) the IV needle shifted somehow and the Albumin broke through the blood vein and infiltrated the space around in my arm. The photo below shows quite a bit of improvement if you can beleive it, and so now my left forearm looks like Popeye's forearm. I just wish it had its strength...sure would help Megan out a lot since she has been working off the chain organizing our house and garage, as well as building a shed with in our yard with her mom. 

Bad bruising too. Not painful, just a pain. 

This is what my arms typically look like. From two blood draws per week and the IV infusions, my arms rarely get a rest from needles all working together to keep me as strong as possible and to monitor my overall health. 

I didn't want to show these pictures just to show off my beautiful bod, nor to boast and say, "you think you got problems? Check this out." I just thought some of you might find it interesting, educational, or just some way to gain a better understanding of what liver disease, or any physical disease, can do to the human body. While the photos may not show it, I'm doing well but also am ready for transplant. Again I thank all of you for your prayers, your thoughts, your donations, and your help. It saves our lives, very literally as you can see from the photos above. 

I would do a horrible injustice not to thank my Megan for the wife and caretaker she is on a daily (and nightly) basis. She is the strongest woman I know, and the greatest caretaker. Having just passed Mother's Day, I hope she knows how much she means to me. We try to find a good balance in our marriage and family of fun activities and rest. Rest comes in many forms for a caretaker. It may be a nap or a quiet movie night. It may be an escape from the scene of the illness. That's why we try not to focus on the what if's or what will be's of my disease. I love the days I am with her, but I also love almost as much, if not more at times, the days when I feel good enough to take the reigns of the house. When I feel strong enough to take care of Miles and even get a few things done around the house so that Megan can go get a massage or use the Snowbird pass her dad won for her on a beautiful fresh powder day, I couldn't be happier. As the dedicated caretaker that she is, she deserves more than this. There have even been days when someone in our amazing family or neighborhood has been able to watch Miles while I spend a day at the hospital getting infusions and Megan takes a few hours to get up and ski or bike (especially since you had to jump on every chance you got to ski this winter) and Megan had come back refreshed and renewed with a big smile on her face and fun stories to tell. These moments bring me the greatest joy. Some may think she should constantly be by my side, but I know that mental and emotional health are equally important as our physical health. She is such a gift to Miles and me. I am so blessed and wish her a belated Happy Mother's Day (I didn't fiorget it on Sunday, she just deserves another one) because she is my greatest blessing, and I thank the Lord with tearful joy for her every day. 

We will keep you all posted to the best of our ability here as we hopefully near a successful third liver transplant.

Peace and love for now. 

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.