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:

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

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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