Monday, May 27, 2013

Beautiful Faces!

All we can say is WOW! Thank you so very much for all of the emails sent Alec's way. He didn't know that I had sent an email out telling all of you to send as many happy, positive, emails and texts his way.  So when he woke up in the morning, he saw that he had several emails waiting to be read. .He LOVES them! He may not respond, but he is getting them and it is making a difference.  It's nice to see him smile and watch his eyes glitter with hope and happiness. So, thank you. keep the emails and texts coming.

When you are at the hospital, you feel somewhat isolated from everyone.  Especially because he isn't well enough to have visitors.  I had this idea that I would ask all of you to send photos of yourselves holding up a message to Alec.  The response so far has been tremendous! This is going to be an ongoing project, so please, if you would like to add to the lot please do! Email me your photo: meganrampton@gmail.com.   I have compiled the photos that we have received thus far and turned it into a slideshow. I showed it to Alec yesterday, and he just bawled (happy of course). He said, "Megan, I REALLY needed that. That was the most beautiful thing I have ever seen." It really makes a difference when you can SEE with your eyes all of the people that love you and are thinking of you everyday.  THANK YOU ALL! Our family is happier and doing better because of you! xo 


















Tuesday, May 21, 2013

One week later and we are still here at the hospital. The pros: our awesome nurses and transplant team, pain meds, fun visits and posters, boost breeze, and a watchful eye. The cons: no open windows, boring, nurses keep coming in when sleeping, physical therapist jostling you at of bed at 7 in the a.m And asks you to do squats, hospital food, yuck! We really are so thankful to be taken care of out here at IMC hospital. If you can love a hospital, well then, we love this one. While we don't exactly want to be here right now we are still glad to feel peace here.

So Alec isn't well enough to come home. I know at times he has gone crazy in here and just wants to get out. But then on the other hand, he and I are really glad that we are here and that we are watched over every minute of the day. We have made good friends with our nurses... Jason, Nathan, Cathy, Stephanie, and Rayma. Alec loves the dude nurses and he says if anyone is going to heaven then its Jason. He is a cool dad and takes care of All of us, not just Alec. He is really comforting.

So the update on Alec: He is the top of the blood type A transplant list. That mean that as soon as a liver becomes available and viable it's his. It's hard to watch him right now. He has some pretty good days in here but the last 3 days haven't been so hot. Lots of abdominal pain and cramping, nausea, and constipation. Poor guy threw up a few times last night. His kidneys have slightly improved but not enough to send him home. And to be honest, as much as he and I want him to go home it doesn't feel right, so as Victor nivorskgy says from the movie the terminal, "WE WAIT."

It can be and is a difficult thing, waiting. We see the finish line up ahead and like the lyrics in one of our favorite bands F.U.N. says, "I put one foot in front of the other!" There is this funny card that I have at home that has a picture of a tunnel on the front and a caption that says, "there is a light at the end of the tunnel..." And on the inside of the card it says, "just pray its not a train." So true right?! Alec has memorized the children's book, "going on a bear hunt" because he has read it so many times to miles. I have sweet memories of putting miles in our bed when he can't get to sleep and Alec whispering the words of going n a bear hunt to Miles while paying with his hair until he falls asleep. So, just like the bear hunt and all of the obstacles they face while try g to catch their bear, "we can't go under it, can't go over it, we have to go through it!" So, the only way out is through. (Unfortunatly).

People comment about our humor and the positive attitudes we have as we are going through something so difficult. We often hear, "how do you guys do it?! How do you stay so positive?" So other than the fact that we are totally awesome, super funny and incredible peeps, haha, I'll tell you our recipe for tough times: Rule #1. Let go. As soon as you realize you have no control over the situation,  your life becomes a lot easier. It's nice to have our faith and knowledge that Heavenly Father is taking care of us. Rule # 2: we have adapted from president hinckley and his words, " you can either be happy and wise, or miserable and stupid." We can't change our situation. It's a fact. So, we try and at least create a force field of positivity and humor to help shift the heaviness of it all. Rule #3: people love you and they want to help....so let them. This has been one of the hardest things for us actually. We feel more comfortable helping others than we do receiving help. We are learning though. So thank you! Rule # 4: you are deserving. Whatever it may be. . . yummy food and candy (lately my favorite: nutella crepes with extra strawberries and bananas from the restaurant, " Eggs in the city." oh yeah with a side of bacon. They have the best bacon!) hugs, babysitters watching your son, financial assistance, dinners, cards, phone calls, coloring books, crayons and cars for miles to play with at the hospital, and most of all prayers. We feel them, we really do! A few years back I was this sensitive volcano on the verge of eruption, like, all of the time. Now, I feel so strong, I feel in control (which is funny because things are so out of control... Rule#1) I feel more mature (stop laughing cousins), and I attribute it  partly to the fact that I want to be teachable. But most of all, it comes from a loving Father in Heaven. I know HE knows how strong I am, but he wants ME know how strong I am. ( those words have stuck with me from a John Byetheway book. I don't want to be sued for plagiarism here. So, those are his words not mine, but, they are true). We all need to give ourselves a little more credit. We are pretty awesome people living in a crazy good yet weird world. Sometimes, as hokey as it sounds, I celebrate and say,"yay me!" Because life is tough. It is hard. Yet we are doing the best


Thursday, May 16, 2013

Hospital

Just a quick hello from Team Rampton. I was re-admitted to IMC on Tuesday afternoon with sluggish kidney function again, and was completely fine with this call because I was in quite a bit of pain. I've been hydrated and medicated and now have a feeding tube giving me some much-needed nutrition to prep me for the ultimate goal of liver transplant. My docs have said that the recovery process post-transplant is markedly improved with better pre-transplant nutrition. So since I have been losing muscle mass and nutrients like a gambling addict loses nickels, this was the best route. As you can see in the photo below, Miles needs no feeding tube. Putting the tube in was a nightmare that included lots of vomiting and some more vomiting, but now it's been in for just over a day and seems to be doing its job, which is good. I just hope I'm out cold when they take it back out. 
So life goes on and we are hopefully just progressing towards that liver transplant. The prayers on our behalf are working like a charm. I may not be in the best physical shape of my life. I wish I could go back in time, I'd take State. But our family's spirits remain high, and we attribute that to our support from all of you. Thank you and please keep it up! We'll get through this! We love you all!

Sunday, May 12, 2013

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
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