Monday, April 21, 2014

"No news, is Good news," so I guess this aint' such Good News!

We've been running a liver marathon over the past year and hopefully THIS TIME we can cross the finish line. We are so freaking close (excuse my language Grandmas). We have truly appreciated the way in which everyone has been sensitive to our situation.  We have felt each and every prayer and sweet thoughts on our behalf. Everyone has treated us with the perfect amount of respect (letting us know they are concerned but not asking us all of the time). We are very aware that Alec's health issue doesn't just affect myself and Miles.  The effects are far reaching and for that we are sorry but also grateful to have your hearts in sync with ours.  

It's been a very weird  year.  Lots of ups and downs. The best way I can describe what we have been feeling is emotional whiplash. Kicked around when you are already down on the ground.  It's amazing just how much of a beating Alec has taken as well as myself for witnessing what he has had to go through. I am very proud him.  No one else could go through what he is going through with such courage, faith, and optimism.  Our doctor just came in and asked Alec how he was feeling.  Alec responded in his little hospital bed, "Terrible."  I was completely shocked with his response. I told the doctor that if my husband said that he felt terrible he means it! Because usually he says, "I'm ok."  The doctor replied, "I know. We all know. This guy is as tough as they come." It has been a whole year living poorly and the kid needs a break.  Hopefully its coming soon.  I can't tell you how wonderful it feels to have doctors treat you that truly knows you.  You don't have to repeat the same stuff a billion times to ten different people.  They have been with us every step of the way and for that we are so grateful.  Talk about Heavenly Father having our backs.  I can't imagine going through this in a different state, or even hospital.  We are so impressed with our doctors sharpness and love.  I think it is very rare. 

People often ask us, "How are you guys doing?" We typically reply with, "We're hanging in there."  I think we decided to stick to that answer because it was just getting to hard to tell people the details of our lives and watch their reaction.  So much sympathy, compassion, and heartache in their eyes for us.  We live this life everyday. Some days better than others. Sadly, we have become accustomed to our new life. But, others have not.  It hurts to watch others hurt for us. We would rather not worry others, especially those who are far away. It's a circumstance that is beyond our control and yours. But, now you are lucky (or maybe not lucky) because I feel like telling you what has gone on over the past year, especially recently.  Alec has been on a feeding tube (called TPN that comes from a port in his neck) for a little under a year.  This gives him 100% off his daily calories and nutrition.  He has had such a poor diet (no diet at all) that this really acts as his life support.  He's a skinny guy averaging around 145-150 at 6'2". I don't even want to think what would happen if he didn't have this intravenous feeding.  He's been eating ice chips and popsicles for the last 2 months about.  He throws up at least once a day. He is nauseated all day long.  He is weak. He has lost pretty much all of his muscle mass.  He gets dizzy.  He can't drive. He has shortness of breath. He gets muscle cramps. He needs a babysitter (i.e.) to watch over him everyday.  His mind is foggy.  He sleeps allllll the time.  He has short term memory loss. He moves from bed, to couch, to bathroom, to couch, to a chair in the sun outside, and back to bed.  He is plain and simple: exhausted.  And why wouldn't he be? So, with all of these symptoms creeping up a little more intensely just in the past couple of weeks and especially the last 2 days, it was time to go back to the hospital.

Yup, we had to come to the hospital last night.  Although Alec's main problem is his liver, his kidneys have taken a beating in the process. So, we are back giving them a lil' TLC. We just had some of the team come in and give us an update on Alec's x-ray and ultra sound.  I shared the information over the phone with Alec's father Vince. He is such a stinking smart man, and I'd rather relay his response on Alec's diagnosis than my own.  His way makes more sense.  (Also, please excuse my poor grammar and sentence structure.  Half of the problem is that the English language is not really in my skill set. Even though I graduated College, I still believe I capped out smart wise around the 8th grade. 1/4 of the problem is because i come from a generation of knuckleheads that changed the english language to fit in text message form. And, the last 1/4 is because I am so stinkin' tired and I won't proof read this).  Ok. So. This is Vince's text message that he relayed to his kids after talking to me.  "Megan can correct this if it's off base, but I understand the situation to be this. Alec's docs have decided to hold off on dialysis for now. Instead, they will administer Coumadin, a blood thinner (generic name: Warfarin, the principal ingredient in rat poison, but that's another story) to alleviate congestion in a main blood vessel passing through the liver.  This will also hopefully aid in normalizing the kidney function, but the big pay off will hopefully be to spike the INR component of his MELD score (already at 29). That's right they finally have a diagnostically-defensible reason to give him what he needs to qualify  for transplant priority."
Pretty much, we are on the right track toward our end goal to receive a transplant.  You never know when it will happen though. Alec has been on the transplant list for a little over a year. We hope its right around the corner. So in your prayers and in your hearts ask for a happy ending because we are "over it!"      
 I have to give the Easter lesson in church  and so last night  Alec and I read a beautiful talk together given by Elder Wirthlin.  It couldn't have come at a better time because we had just gotten to the hospital and we were both feeling frazzled, discouraged, and tired.  We did not want to be here.  And then on top  of it, everything was different about the hospital floor we have come to know.  When the level 10 button was pushed in the elevator and the doors opened I didn't recognize "our floor."  They refinished the floors from carpet to tile.  That upset me.  (I mean, I know it's cleaner and all, but don't go changing things that I have become familiar with).  

Then, when we asked if our favorite Nurse Jason still worked on the 10th floor, they replied nope. He works in the ER now.  I lost it! I started to bawl.  Somebody give me some familiarity here! As I looked around I didn't recognize any of the nurses that we have come to know and love.  My anxiety levels raised through the roof and I felt a panic attack coming on and realized I had forgotten my inhaler. Alec used the restroom and I told him that Jason wasn't here.  We both held each other and cried.  We needed that one person that calms us and lifts us up here.  Later that night, we had a nurse we knew, Ashley. She's a gem. We felt a lot better. And then, when Alec pressed the nurses call button and cute little Cathy answered we looked at one another and smiled.  She has the sweetest little voice that just reminds us how a grandmother talks to her grandchildren. So tender. With all of these little blessings to show us that we were watched over and comforted, we started to accept the fact that we needed to be here and that it was right to be here. We settled in and read Elder Wirthlin's words: 

Sunday Will Come

Of the Quorum of the Twelve Apostles

From an October 2006 general conference address.                                

The Dark Friday of the Crucifixion

I think of how dark that Friday was when Christ was lifted up on the cross. On that terrible Friday the earth shook and grew dark. Frightful storms lashed at the earth.
Those evil men who sought His life rejoiced. Now that Jesus was no more, surely those who followed Him would disperse. On that day those men stood triumphant.
On that day the veil of the temple was rent in twain.
Mary Magdalene and Mary, the mother of Jesus, were both overcome with grief and despair. The superb man they had loved and honored hung lifeless upon the cross.
On that Friday the Apostles were devastated. Jesus, their Savior—the man who had walked on water and raised the dead—was Himself at the mercy of wicked men. They watched helplessly as He was overcome by His enemies.
On that Friday the Savior of mankind was humiliated and bruised, abused and reviled. It was a Fridayfilled with devastating, consuming sorrow that gnawed at the souls of those who loved and honored the Son of God.
I think that of all the days since the beginning of this world’s history, that Friday was the darkest.

Sunday Will Come

But the doom of that day did not endure.
The despair did not linger because on Sunday, the resurrected Lord burst the bonds of death. He ascended from the grave and appeared gloriously triumphant as the Savior of all mankind.
And in an instant the eyes that had been filled with ever-flowing tears dried. The lips that had whispered prayers of distress and grief now filled the air with wondrous praise, for Jesus the Christ, the Son of the living God, stood before them as the firstfruits of the Resurrection, the proof that death is merely the beginning of a new and wondrous existence.
Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays.
But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come.
No matter our desperation, no matter our grief, in this life or the next, Sunday will come.
I would like to add my testimony to Elder Wirthlin's.  We have all had our fridays, but just as we know the sun will rise the next day we know that there will be relief to our heartaches.  How our hearts have been tugged in this past year. We are grateful for our Testimony knowing that the Savior Jesus Christ has risen.  We know this to be true.  I don't want to step on anyones toes here, so know that this is my opinion and it is completely out of love.  But really think about this, Someone had to created us.  There has to be a designer.  This designer designed man as His best creation.  Do you really think the end game is death? That We come here to live our lives, work in some of our crappy jobs, take the same route home to and from, eat some yummy food, have some good laughs, meet great people, some weird, learn some spiritual lessons and then thats it? I know that this can't be true.  We are here to progress, to grow, to learn all that we have, to share all that we have with others just as the Savior Jesus Christ did on the cross and through his resurrection we all have the chance to live again.  And be free with out pain and Liver disease!!!! This gospel message gives me so much hope. 

I am so grateful for the little miracles we have received thus far in our lives.  It truly comes from a watchful and concerned Heavenly parent. Out of all the things that have gone on through out my life I am most grateful for the huge heart i have been given.  My capacity to love is what makes me happy.  I love meeting new people and learning their stories.  I love diversity.  Its what makes us all so beautiful.  We are the same though however in that we are all God's children. We all need each other.  (Even Karl Malone:) 

Ill leave you with this message that Alec and I read which also calmed our hearts and gave us strength and peace for the things in which we will have to go through in these next coming week/weeks. It is because of all of you and HIM that we can do this and do this well and with a happy heart. Thank you all! And have a happy easter weekend!! we will keep you posted. Please share with whomever. We could use the love and prayers:)
xo Megan and Alec and Miles

Elder Marvin J. Ashton (1915–94) of the Quorum of the Twelve Apostles discussed how we can fulfill the Lord’s commandment to feed His sheep:
“Jesus said, ‘Feed my sheep.’ (John 21:16.) You can’t feed them if you don’t know where they are. You can’t feed them if you give them reason to resist you. You can’t feed them if you don’t have the food. You can’t feed them if you don’t have charity. You can’t feed them if you aren’t willing to work and share. …
“Those who need help come in all age brackets. Some of His sheep are young, lonely, and lost. Some are weary, afflicted, and worn with age. Some are in our own family, in our own neighborhood, or in the far corners of the world where we can help with fast offerings. Some are starving for food. Some are starving for love and concern.
“If we give His sheep reasons to resist us, the feeding process becomes difficult, if not impossible. No one can teach or help with sarcasm or ridicule. Dictatorship or ‘I’m right and you are wrong’ will negate all efforts to feed a wandering sheep. A wall of resistance will be built, and no one will benefit. …
“By our actions we show our love. Expressions of affection are empty if actions don’t match. All His sheep need the touch of a shepherd who cares” (“Give with Wisdom That They May Receive with Dignity,” Ensign,Nov. 1981, 91)

1 comment:

  1. Alec and Megan,

    Greetings from Seattle. I will never forget the first day I met the two of you in Clinic last year. I want you both to know that I think of your family often. I have my best energy headed to Utah. Thank you for the update on the blog. Keep those hepatologists in line! Jesse Nehring