The Jerk - Round 2

Four years ago, we started this blog following a life changing liver transplant I had received. We continued with the blog for a while, doing our best to keep any followers up to date on how our lives progressed from then on. Then we just kind of stopped. With an active 2-year-old, work, home and life in general, it has been hard to find time to sit down and write about all that has been going on in our lives. 

I guess I could sum up our lives since our last post by saying that we love our home and Megan has worked her guts out to make it a beautiful and spiritual place, our little family brings us more happiness than we could ever have imagined, and that the liver disease that took my first liver is back and I'm now listed for another transplant.  Actually, that last part shouldn't be included in a summary of our lives really at all. We found out that my liver disease (PSC) was back a little over two years ago.  And as we told family members the sad news, we made it very clear that this bump in the road would not define who we were. We were going to continue to live our lives as though nothing were different, and we have. We've been blessed to be able to have so much fun together as a family. We've traveled and seen amazing things, we've biked, hiked, skied, and played golf together, and we've done our best to do as much as we can as a family. 

The symptoms of my disease started to slowly manifest themselves about a year ago, and consisted mainly of fatigue. In the past few weeks, the symptoms have become more evident.

I would go into more detail in this post, but since fatigue is a major symptom, I'm tired of writing it so I'll just paste the emails we've shot to family and anybody else who's email address we have is current. Enjoy. 

For now we are happy. We are pushing forward. We've done this before, even though this time around presents its new challenges. I have different symptoms. It's been a longer process with more hospital visits than we'd like. We have a mortgage and a beautiful son to care for, neither of which were in the picture last time. But we will manage, especially with the help of all the amazing people we have in our support system, and with our faith in Jesus Christ and His gospel. It definitely takes a load off. 

Here are the emails. For now, peace be the journey. 

From Alec, April 24, 2013

Hey everybody,
The last time we sent one of these update emails out we had the great news that Megan was pregnant with Miles and the bad news that my liver disease had come back. This time, I'm sorry to say, is just not so great news and has to do with my health. As a matter of fact, I'm writing this email from a hospital bed, but don't worry too much about that I'll get to it in a minute. My liver disease has progressed enough in the past few months to get me back on the transplant list, which means I just need to get sick enough again to move up that list. We still don't know a timeline for this as it will be decided by my body (as beautiful as it is otherwise) and by the Lord. My "sickness" level is calculated by a few blood tests and is called a MELD score, that ranges from 6 to 50. Healthy people like yourselves have a MELD score of 6, and mine was just calculated at 23 this morning. It was 20 when I was officially listed on April 2nd. During our first rodeo I was transplanted somewhere in the low 40s, 42 I think. On a side note, "42" was a great movie - go see it if you haven't yet. They are currently transplanting eligible candidates in the mid to high 30s, but that can always fluctuate.
Now for the reason as to why I'm writing this email in a hospital bed. I was actually just feeling a little nostalgic and thought I'd come stop in for a Staycation. That and my kidneys are a little dry. One symptom of my liver disease that I did not develop last time was ascites. Uh-cite-ees - for those like myself who don't know how to pronounce it. I don't totally understand it, but my abdomen had progressively swelled up over the past few months with all sorts of fluids to the point that it was causing me some pretty serious discomfort last week, and made it difficult to breathe and eat, which are two of my favorite things to do. So to fix this, I had a catheter poked into my abdomen to drain a whole bunch of nasty brown and yellow-ish fluid out. After that, I felt like a new man! I was ready for golf and yard work and everything! However, my kidneys disagreed and started to struggle since so much fluid had been so quickly removed. To counteract this, I was infused with replacement fluids to try and help the kidneys, but that didn't work as well as we'd hoped it would. So just as I was getting ready to mow the lawn today and fight crime later tonight, I was called into the hospital, and here I am. I have an IV giving me fluids, I was drained of a little bit more of that nasty stuff so that it could be tested for infection, and hopefully we can either fix this with constant fluids or possibly antibiotics should there be an infection. Hopefully I will be out of the hospital within a couple of days and back to life as normal as it can possibly be while we wait for my health to qualify me for a new liver.
This email is long overdue and I should have been quicker to let everyone know how we have been, and I have no good excuses for not doing so, so here we are. First and foremost, we wanted all of you to know how much we love an appreciate all that you do for us. We've been through this before, for me and my issues and for our little Miles' crazy little intro into this world, and we've made it through smoothly because of your thoughts, prayers, and fasts on our behalf, and that is all we could ask for now as we move forward with this new hurdle. As I said before, we don't know when the time will come for me to hopefully get a new liver, since even that is not a guarantee, but we love and feel your prayers in the meantime. Overall we are very happy and realize just how blessed we are. We know how things could be much worse for us, and are grateful that they are not but mindful of those who have tougher challenges. We are a little tired, but happy to be alive and to have so much love and support from all of you. We will do our best to keep you apprised of our situation, but if you don't hear anything then most likely no news is good news. So that's us! For good luck please send this to at least 10 friends (just kidding, don't do that) and anybody that you don't see listed above that might be interested, and please don't hesitate to let us know if we can serve any of you in any way, because that helps us too, so hey, win-win!
Peace and love,
Alec, Megan and Miles

PS - Miles is doing amazingly well and growing too quickly. Seriously though, we may have to get his pituitary gland checked because he's thick as a brick and probably sneaking sticks of butter in the middle of the night. The pain in our backs is proof of that. 

From Alec, 5/8/2013: (Feel free to forward this message to anyone you like)

Hi everyone,
It's us again checking in to give you an update on my health and where we currently stand. I, actually, am not currently standing. I'm sitting in a chair on our front porch trying to recuperate from a rough day yesterday battling some of my everyday symptoms associated with late-stage liver failure. Some days are better than others, and while today is better than yesterday, it seems my health continues on the gradual decline. While this is frustrating, I can't tell you how much your fasts and prayers over the past few weeks have meant to me personally and to our family. We have been strengthened beyond belief. Megan has always been one of the strongest people I know (that's why I quickly claimed her as my property through marriage) and that strength, as it did with our first rodeo, has been magnified by ten as she has taken care of me, our exciting and active Miles, and herself. I am so blessed to have her, and to have all of you behind me. It brings me to tears every time I stop to ponder how the Lord has blessed us with such an amazing support system.

For now my kidneys are pretty well under control, and the focus has shifted back to my liver and the other associated symptoms. These include extreme fatigue and muscle loss, recurrent bloating from the ascites that got me in the hospital a couple of weeks ago, sleep reversal something which makes it hard for me to fall asleep at bedtime but I can fall into a coma-like nap at any given time in the middle of the day, and a whole bunch of bowel issues that are best left to the imagination. So that's me and my health. I get my blood drawn once a week to see how high I am on the list. I am climbing gradually, and while I feel strongly that I will get a new liver in time, there is no way to know when that time will be. Could be a week, could be a month.

So now we hurry up and wait, and while it can be difficult, it also helps our little family put a lot of things into perspective. I don't know why we're going through this again, and I'm not sure we learned everything we could the first time, but we are going through it again, and above all the garbage I feel, I feel love. I feel loved by all of you. I feel love for all of you and your examples to us and to me personally. I feel a renewed and strengthened love for Megan, and wasn't sure I could love her any more than I already did, but I do love her more every day. I love Miles. He's the perfect little boy. I love that he begins wrestling matches at random moments even though he head-butts my ailing internal organs. He drives me crazy when he just yells "More! More! More!" And when I ask him what he wants more of he just nods and says, "Yeah! More!"  And I love how he makes me melt when he just gives you a hug at random because whether he knows it or not you need that hug. He has taught us to love to care about people, and I don't know how much more Christ-like you can get than that.  I feel love for my Heavenly Father and His Son's atonement that helps me know that I'll never be alone during even the loneliest of times I've had during my sickness. I see God's hand in so many things, and that is the greatest comfort of all, to know that regardless the outcome or the "what-ifs" of my health, He directs all of us for our eternal benefit.
Well if you've made it this far into the email, thanks for sticking with me. I just feel a lot of love! About four years ago when I made it through my first transplant, we started a blog to inform everyone about what had happened and to keep any that would be interested up-to-date on our lives from then on. We did ok updating it until about a year ago when Megan posted about my birthday and then we just stopped. We are going to try to get back on that train now and keep it current so that, again, anybody that's interested can follow up on how we are. We make no promises that it will always have new, juicy info on what we're up to, but we'll try. Here is the link to the blog in case you've lost it or never had it or tried to forget it: 

alecandmeganrampton.blogspot.com

Here is where all the fun started in case you are not up to date. 

http://alecandmeganrampton.blogspot.com/2009_05_01_archive.html 

Above all, we love all of you for everything you already do to bless our lives and strengthen us through this difficult time. I'd be lying if I said this was all easy, but the load that we bear right now has been significantly lightened by all of your love, prayers and efforts on our behalf. Thank you all so much.

We love you,
Alec, Megan, and Miles

PS - I don't think I was completely clear in the email I sent a couple of weeks ago. To those who received it, I had referenced a past email we had sent wherein we informed family and friends that my liver disease was back, and that Megan was pregnant with Miles. Miles is now almost two years old. He is our only child, and there are no other children currently on the way. In other words, Megan IS NOT pregnant. I apologize if I had confused anyone with that. While we would love to have more children some day, that day ain't gonna be this day!

From Megan, 5/10/2013

Hello Friends, family and neighbors!

I don't even know where to start. These past few weeks have been. . .well . . .hard. For those of you who don't know, Alec's liver disease came back two years ago and decided to really show us who is boss this past month.  To be quite honest, today I was really scared.  Alec has been lying in bed for the past three days and only gets up when necessary. Today he woke up and was so fatigued that he barely had the energy to talk. His ascites (fluid retention around the abdomen because the liver isn't working) came back and he looked as if he was 4 months pregnant. I didn't like seeing Alec looking like he did and neither did he.  He called the docs and we were told to go to LDS hospital where he was going to have (for the 3rd time) a parenthesis (it's where they stick a needle in his abdomen and suck out all of the fluid). The needle alone was 4 inches long! Yikes! His belly went from looking 4 months pregnant, to 3 months. . .2 months. . . until it was a cute little pot belly. They drained a little over 4 Liters of fluid! On a skinny guy like Alec that's a lot. Well, it's a lot period. They did a couple more tests, ultrasounds and blood work to see if there is any bacteria or infections.  We have been told that some people who are in the later stage of liver disease (like Alec) sometimes go into the hospital once a week to drain the fluid that builds during that week.  That just might end up being our story. What is nice about the procedure is that it causes almost immediate relief.  Alec had to be wheel-chaired into the hospital before the procedure. He was in sooo much pain that after i had registered him, he said sitting, uncomfortably in the waiting room chair, "Ugh, I can't take this. I have to lie down!" He just got up and left.  I thought he was going to find a restroom or something but when he didn't come back after 15 minutes, I thought I'd go looking for him.  I found him. . .After talking to one of the nurses he said, "Yeah, we didn't know what was up with this guy. He just barged in here, saw a bed and laid down. We were like. . .O.K?!" After getting to know him they thought that what he did was pretty funny. (This is a totally random side-note so if you want to skip the random thoughts of Megan Rampton then go right ahead.  While the pain that Alec encountered was not funny, it did remind me of a scene out of the old movie with Tom Hanks called "The Burbs." If you've seen it then I am sure you are chuckling right now. Spoiler Alert: At the very end of the movie after Tom Hanks sets fire to The Klopeks house, he emerges from the fire blazing house with burns all over his body. Tom Hanks face is covered in bandages as he begins rampaging.  He sees a stretcher and dramatically throws himself down on it waiting for a medic to put him in the ambulance. No one came. So crazy Tom Hanks leaps off the stretcher and hysterically throws the stretcher up in the ambulance, lies back down and yells, "take me to the hospital, I'm sick."  If you don't understand any of this, don't worry. The Burbs is a quirky movie that Alec and I quote from and so it was just funny that Alec threw himself down on a hospital bed much like Tom Hanks did on the stretcher). Back to reality: After the procedure he was able to get up and walk out of the hospital. Good Sign.  It's 10:00 pm and he's been lying in bed ever since we got back (5:00 p.m.) Despite all of the rotten things he has had to go through he still has a sense of humor. After his procedure he told the doc, "Well, thanks for the tune up!" hehe. What an awesome guy I get to hang around with for the rest of my life.  Always a good time with that kid even when its bad.

The near future holds many uncertainties and questions that we don't even have the answers to.  We do have hope and faith that he will receive a liver transplant before it's too late.  It is a very heavy topic with lots of emotions involved, so if you see us and can't quite figure us out, don't be offended.  We are processing EVERYTHING! 

Alec hasn't been to work for over a month now.  We are soooooo grateful for Bonneville Mortgage and the people that work there that have provided such compassion and understanding for what Alec and I are going through. Thank you very, very much everyone. I am also so grateful for all of the girls at Bloomingsales who have made work so therapeutic for me. Love you!

While Alec has a lot of time on his hands he needs his peace and rest. We surely have appreciated the visits thus far, but, just for now he can only take visits in moderation.  So please call or text before if you'd like to come and visit.  

Our dear Aunt Tori once received some excellent advice when her husband Mike was diagnosed with Lou Gehrig's disease. She has passed this advice down to us. We were encouraged to pick a name for Alec's disease so that he could create separation from it. In Tori and Mike's case, they named his "LOU," short for Lou Gehrig's. We on the other hand chose, "THE JERK," because that's how he treats us. We have tried not to let "THE JERK"  consume us and so we simply ask you to try and do the same. The next time you see us, ask us what we ate for breakfast or what funny thing Miles did that day instead because suffice it to say we probably don't feel great physically. Ha!Ha!

When it comes to the liver transplant process, 3 words come to mind: MEDICAL. BILLS. YIKES! To try and help raise money for our little family I have illustrated 5 x 7 cards with some of our favorite quotes, scriptures, and sayings that have helped us through tough times. ("IF THE SKY FALLS HOLD UP YOUR HANDS." "NO WORRIES."  "JUST KEEP SWIMMING." " 2 Timothy 1:7- For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. "EVERY LITTLE THING IS GONNA BE ALRIGHT" They are $5- if anyone is interested. Just leave us a comment below and we will be in touch. 

We have soooo loved and appreciated the phone calls, texts, fasts, thoughts, banana bread, meditation sessions,etc.  We love it all! It's such a beautiful feeling to feel loved. We hope we show the same gratitude, love and joy for you all.  As you might be able to tell, all of this is a little overwhelming.  

As Nacho Libre says Hug, Hug, Kees, Kees!

xoxo Megan, Alec, and Miles

Alec, Ayek, Ferd, Lalec, Da-Da... Happy 29th Birthday! Holy cow we are old (not really but kind of) Life has been quite crazy lately and I can't believe it is already June! I wish we could freeze frame this month until we get settled into our new house so we could actually enjoy the best month of the year. Since we can't (bummer), at least we had the chance to take a break and celebrate you! First of all...you are 29!...second of all...we have been married almost 7 years!...third of all... our lil baby is almost 1! Were we around when all of this time flew by? Everyone says its only going to get faster. Yikes, I don't  like the sound of that. Who started the tradition of putting one extra candle on their birthday cake anyway?  29 going on 30? What the heck does that mean? Oh well. Anyways, after all of this rambling I really just wanted to say that I love you and happy birthday! xoxo Megs

 Your happy birthday hike to donut falls eating a donut...or bagel. Haha

Miles smiling because you are his daddy

I love that you are trying to recreate the sketch of you as a baby. Happy Birthday!

Australia!

My parents are almost home. HIP!HIP! HOORAY! 3 years is such a long time to be away from family, especially when little ones are born.  It was quite evident that we needed to pay Australia a visit so the grandparents could see their little grandson. So, here is Miles little journey in Australia. Lucky Kid!

Grandpa's first time seeing his grandson. Oh how I miss those tears Daddy!

Mom and my little man reunited.

Dad snuggled with Miles every chance he could get. Several days my parents would come and get Miles out of bed in the early hours of the morning just so they could sleep with him! Adorable!

The coastal walk on Bondi Beach is gorgeous!

My mom is sooo beautiful!

A Trip to the Sydney Zoo. Talk about prime real estate.

Alec sizing up the competition

Ferry Rides around Sydney Harbour. My dad was man enough to put Miles in a Sling. 

Cute Grandma Bonne

and yes,

 we went to Church! 

But then played some more. . .

Everyone loves Alec!

my mission "mum" and dad

  I think the reason I postpone blogging about Australia is because it makes me homesick for my parents. The other day in church (shhh. . . don't tell) I google mapped Sydney Australia, and more specifically the places in Sydney that Alec and I have had the opportunity to visit. (a.k.a Bondi Beach!!)  The Aussies really are spoiled with their beautiful views. They have some of the most amazing beaches in the world! sooooo jealous. (All we have for water is a lake...that stinks, literally).

 Anyway, seeing as how my parents only have a little over 4 months left of their 3 year long mission I think I have the strength to post something about them with out getting too emotional or homesick for them. They were called as mission presidents to serve in the Sydney, Australia mission for the Church of Jesus Christ of Latter-Day Saints. Let me tell ya, if there was any one in the world that you would want to have as your mission president and mission "mum," it would be Jeff and Diane Simmons.  I know that I am biased, but they are the coolest people I know. As I have "matured," (I put it in quotes because people that know me know that the word mature is not really a word that is usually associated with my name) I have realized just how lucky I am to have them as my parents.  They both are rockstars when it comes to making people laugh, making people feel good about themselves, and most of all making people feel loved.  I am so jealous of the Missionaries that have been able to have them in their life these past years, but I am glad I could share my oh so awesome parents/buddies. They have worked extremely hard in Australia and through their example I have learned that missionary work is truly amazing.

  What I have enjoyed the most is having had the opportunity to visit my parents many times and meet the people they work and serve with. All of the times that I have returned to America after spending a couple weeks with my parents, i have just cried.  I longed to go back. I want to be with them, to participate in missionary work, and just be where the spirit is so strong. My mom lights up a room with her ear to ear smile and her quirky isms that make her Diane.  She is soooo brilliant when she speaks to the missionaries and to strangers because her spirit and words just stick to your heart.  She is also hilarious! There are so many great stories about her and her crazy funny street contacts.

   I love and respect my Mom and Dad very much. My Dad is a guy that everyone enjoys being around. In a word. . .uplifting. Your spirits will always be uplifted when he is around.  He is funny (he thinks he's REALLY funny, so it makes him even funnier). He is a loyal friend and a great example.  The Elders and Sisters look up to them and genuinely love them as if they were their own parents.  My parents have taken the time to get to know each missionary individually and it is evident to me that they will never forget one another.  It's so special. My parents are very easy to trust, and always easy to love.  I have learned in my life that my parents don't hesitate one second to help their children or others in need.  It is an admirable gift and for that reason alone they are incredible. O.K. I better stop now, because now I miss them.  Now that I am a parent, (crazy, I know) I am able to see that my parents love me, want to protect me and want the very best for me.  I know that's the way I feel about my lil guy Miles.  Life is crazy, but oh so worth it!

And We're Back

So we've been slacking on posting stuff about us and especially Miles. Megan and I look the same, but Miles has grown and now has a beard. He shaved for these photos though. So here's a little dose of the Rampton life. Enjoy!

Christmas!

Miles in his Jump N Go

He loves this thing so much he keeps kicking his legs as though he were still in it for hours after we've taken him out.

Enjoying some rice cereal

I don't know how, that stuff is disgusting.

Family portrait on Temple Square

You can make your own caption here

Another Johnny Jump Up N Go session

For these next three photos, please help us out and create your own caption by commenting on the Photo # (1, 2, 3 or 4) and then your caption. We will pick the winning caption, and its author gets to feed Miles some oatmeal.

Photo #1

Photo #2

Photo #3

Photo #4

And here's a pretty funny YouTube video of a dude singing his order at the Sonic Drive-Thru. I think anybody who spends more than 30 bucks at Sonic has issues though.

Here's to you Blue Monday!

These people in their cars will tell ya that January bites. They are now out of their cars and hiking up our hill. 

Sorry if I am about to offend any of you January Birthdays out there BUT. . . January has got to be the worst month ever!  From August until November you have the pretty fall leaves changing colors and Thanksgiving. I mean who doesn't love a holiday where all you do is eat and watch football?! Then you anticipate Christmas in December and the opportunities that come with it... Family,Temple Square lights, hearts and thoughts toward the Savior. There's always fun Christmas parties to go, good movies at the theater, skiing (not so much this past december), and the feeling that you have gotten fatter this year, because welp... ya did.  Then you have February (which I love because I am a florist) and you sense the weather will be changing soon.  I Absolutely LOVE the springtime! Then comes my birthday in June. (Go June-babies! Alec and little Miles). Then the Simmons family North Carolina beach trip in July. . . boo-yeah (if anyone says that anymore, I don't know). So. . . what does January have? . . besides Alec's mom's birthday? (Happy birthday Janice) Absolutey nothin.' Blank, dreary, nothing-to-do January.  I have always disliked January because it's so depressing. I have to give it to January this year. It was in fact the most enjoyable January due to it's spring like weather and sunshine. Did you know that the fourth Monday in JANUARY is Scientifically Proven to be the most depressing day of the YEAR!!!!! That's today people! So if you have had a terrible blue day today, it's most likely that you are experiencing BLUE MONDAY, the most depressing day of the year.