Sunday, January 3, 2016

2015

This year has been good to us. It started with uncertainty but also optimism as far as my health was concerned. I was in the middle of rejecting my second liver transplant and we were running out of treatment options. It wasn't long before we decided with the docs that my body just wasn't going to accept that liver and after a few miracles and some tension I got my third liver transplant which is sitting solid and healthy to this New Year's Eve day.
It seems like when this year started Miles couldn't even speak. While I know that's not true, every day this year featured a new word or expression he'd picked up from school or television or church or a song (which made me closely examine the lyrics in my music collection) or something. The growth that kids experience is incredible. I would love to be able to retain half of what they do in these formative years. Maybe we do as adults and I'm just a special case. It wouldn't be the first area of life in which I'm a special case. Anyway, Miles is no exception to the fact that kids just grow mind-bogglingly fast. In some ways I don't like this, because I want to freeze him in the phase when he says "mine pants" instead of "my pants" or when he wants to "hippatize" me so that I'll be under his control. I can't get enough of him describing his mom by saying, "Her is beautiful" because "she" is so beautiful!
But then I'll hear him repeat a funny line from a song or a movie and fits in the with the context of our conversation and makes me laugh like I've never laughed before, and I think growth can be good. So I guess it's hard to be satisfied with kids if you're not able to control time, but man kids are the best.
Since kids are the best, we'll bring another one on board! You know how in competitive team sports, the question always arises as to who should be the player that is most likely to come through in the clutch with the game on the line? Who do you want at the plate or on the mound with a full count in the bottom of the ninth? Who takes the last shot, or who gets the ball on the goal line (not Marshawn Lynch in 2015, I guess) when the odds are stacked against you?  I know this sounds cheesy, but in the game of life I am taking Megan to do all those things and more, always. She hasn't ever disappointed and didn't this past year. She is the most amazing person I have ever known. She is by no means perfect, but in our imperfect existence on this earth, we must rely on one another, on both the strengths and weaknesses of each other, in order to persevere and enjoy life. To say the chips were down at a few choice intersections of 2015 would be a massive understatement. But Megan never let her strength nor her spirit falter. I remember points during the past eight years of our ongoing saga when we both felt like folding, and stress overwhelmed each of us in different ways and at different times. Stress definitely got the best of me this past year at times, but not so much Megan. I don't remember her saying how difficult things were, or how she wished we could be done. She may have felt those things, but never vocalized it. I think she just would say how she was tired every now and then. If she broke down into tears, it was over how sorry she felt for me and the pain I was in. She has told me that there were some heart-wrenching feelings during the tension-filled hours of my surgery/surgeries, but I also know that she showed incredible faith and trust in God, in my doctors' capabilities, and my body's capabilities. The Lord has sculpted her through the many trials that she has faced in life, and Miles and I are just a couple of the many beneficiaries of her wisdom and love.
We've learned a whole heap this year. Lessons that God taught us and that will serve us for eternity were gained this year. And 2015 became complete this morning when we found out that the baby we are adding to the family next May is a little girl! We are so excited for this new addition, and we feel that it is the greatest blessing we could have ever hoped for. Miles is going to be the most amazing older brother and will watch out for her better than we'll be able to. I'll just try to stay out of the way with decisions about ear piercings or make up and be ready on the porch with a 5-iron when dates show up. And Megan will have a bond with her daughter that I can't describe in words. 
Words fail to sum up 2015 completely, but we're just happy we got to be around for it together. So nothing but positive vibes for 2016. 
Note to self: Do not use Blogger mobile app to update blog. Nothing but problems. 

Sunday, October 18, 2015

I should shower now

So I'm just over four months out of transplant surgery now and, all in all, things really couldn't be better. It's good to be alive! My recovery hasn't come without a few hurdles here and there, but when I look back at where I was four months ago I realize just how far Megan and I have come. 
About two months after transplant we found some abcesses in my liver that contained infected fluid and caused me a few problems. We figured the infections originated with the complex surgery and how transplant livers shouldn't be on ice for the 25+ hours that mine was, so with the difficult placement of the new liver, or graft, some infections likely developed. 
On top of the wound vac I was already hauling around 24/7 to aid the closing of my surgical incision, I was now treated to two drain tubes inserted just to the left of the lower part of my sternum that hung down about 2 1/2 feet into a plastic bulb that looked like a small hand grenade and collected infected fluid that I would empty a few times each day.  To treat the infection, I was running antibiotics through an IV picc line in my right arm almost all day long. Two of three medications were run once a day while the third was run every six hours. I was also having to use saline syringes to flush or irrigate my incision every three hours round the clock to keep the wound moist and aid it's healing process. This routine continued until the middle part of September. It was not fun but I knew it was necessary for me to do in order to retain this gift from God of a new liver. So while I moaned and groaned about it almost daily, my beautiful wife and amazing son kept my spirits high, reminding me that I was alive and should be grateful for that. You can imagine my elation when I was finally relieved of all these "connections," and it turned out that it happened all at once, which I wasn't expecting. One morning I awoke with a fever. I had dropped Megan and Miles off at the airport the day before as they were joining Megan's mother Diane in San Diego to spend time with Megan's brother Ryan's family. I knew from past experience that a fever in my condition almost assured me a trip to the hospital, as fevers can be a sign of any number of terrible things, that can lead to even more terrible things. So, as sure as bears doing their business in the woods, I was called into the hospital. I had assured Megan before she left that I'd be fine at the house alone and that she didn't need to worry about a thing, so I didn't really look forward to my phone call to her alerting her of my staycation in the hospital. While it caused her some worry, when everything checked out fine in the hospital, she was relieved that everything was ok and that my parents had been there to help me get to the places I needed to go and get the help I needed. In fact, the fever that got me checked into the hospital was the only fever I recorded, but the trip to the hospital turned out to be a blessing in disguise. 
As they tested me for every possible infection and illness associated with my fever, all tests came back negative (which is usually good in the medical field). While testing and scanning for potential problems, we found that not only were the abcesses almost completely gone, but my body and the antibiotic treatments had been effective in completely erradicating the previous infections. So they were able to remove the drains! But hold onto your seat cushions, it gets better. Since I was already in the hospital, Dr. Alonso wanted to get a good look at her beautiful incision, and develop a plan to close up the wound permanently, so that I could hopefully ditch the wound vac.
The original plan was to possibly use a skin graft to close up the now dime-sized hole in the middle of my torso. A plastic surgeon at IMC, Dr. Ferguson, joined Dr. Alonso in my room and we discussed these plans, and that I would go into surgery to have it done. Given the many surgeries I had gone through during the last three months, particularly in the month of June, you would think that the idea of another surgery would send my anxiety levels through the hospital room's ceiling tiles, but that's why I love my docs. I have complete condfidence in them and their abilities, and I know how much they care about me, so when Alonso assured me that it would be quick and easy, I knew it would be. 
Two days later, I went in to surgery, joking with the anesthesiologist as I drifted off to sleep. I awoke in a recovery room that I had been in several times before but never remembered. After being wheeled to my room, I saw my dad waiting in the recliner by the window. The surgery had gone better and more smoothly than expected. No skin graft was needed. They merely pulled the lower flap of skin over the top and sewed it shut. I was finally freed of the wound vac! I sat talking with my dad for a few minutes, and after he had left my hunger started to consume me. I hadn't eaten for over 24 hours. Prior to that I had been eating almost non-stop throughout the day, every day. I was needing to take in at least 4,000 to 5,000 calories per day, just to maintain my weight and aid in my recovery. I remembered that the ICU docs really push post-op patients to get up and move as soon as they can after surgery, as it speeds the recovery process immensely. Since the surgery to close my wound hadn't been too big of a deal, I decided that I needed to eat. Thanks heavens for the hospital cafeteria and their being open 24/7!  As soon as I decided that the anesthesia had worn off enough, I made my way down to the hospital's main floor, grabbed a sandwich, chips, some candy, and my staple yogurt parfait, and stumbled back up to my room to indulge. I did it all a free man! No drainage tubes dangling between my knees, no man-purse attached with long tubes to a wound vac slung over my shoulder, no picc line running from my bicep. I honestly didn't know what to do with myself. 
It's now been about a month since I've been free of all those attachments, and I still find myself stopping by my bedside to grab a wound vac that isn't there. I would have liked to bury that wound vac at sea, or water-ballon launch it from the top of Mt. Olympus, but that's an expensive piece of equipment that may save another's life, so I returned it. I'm in no condition to climb Mt. Olympus anyway. 
Now, the recovery continues. I am still on a fairly hefty dose of anti-rejection meds and other treats that suppress my immune system. I have no timetable yet as to when this will end. My docs are being very cautious, and taking things very slowly, and understandbly so. So far my blood test look perfect, and the liver is happy where it is. So we are moving forward, happy to be alive, and grateful for the many miracles we have been a part of. God truly does love each of us. I understand that it can be very difficult to see His love working in our lives sometimes. I have days where I struggle to get out of bed, because I don't know what the day has to offer me. I forget to realize what the Lord may have to offer others, through me. We each fight so many battles on any given day. I look around at people in public places and think how each one has trials and difficulties in life that nobody knows, or will ever know about. But I know that through faith in God, and trusting in His plan that is individually tailored for each of us, we can conquer every one of those trials, and find true happiness every day. It is not easy, and nobody says that it's easy. But how can we expect the greatest of all gifts to not come with a price?
I was thinking the other day that I really haven't needed my experiences with health issues to solidify my testimony of Jesus Christ and His gospel. I have always known that I can live with Him and God again by following His teachings and doing what is right. I haven't required near-death experiences to gain this testimony. But it has taught me so much more, and continues to teach me everyday. I have learned more about compassion and understanding our brothers and sisters here in this life. I have learned the importance of not sweating the small, trivial matters in life. I have learned the invaluable power of a positive attitude as I have been surrounded by positive, happy people who want what's best for others. I have learned and know, without a doubt, that no matter how difficult or hard or painful life is at times, there is always someone who knows exactly what we may be going through, and that is Jesus Christ. And why does that knowledge bring me comfort? Because when you are lying there with your hands tied to your bed in the dark ICU room, unable to sleep, drink or eat; listening to the unending hums and beeps of the medical equipment around you; unable to speak because of a breathing tube shoved down your throat that feels like you've swallowed a No. 2 pencil; and the only rational thought you can come up with is just how alone you feel at that moment, it's eternally comforting to know that you are not. 

Well I've said a lot. That basically catches you up on my situation over the past few months. Megan has been going back to work more, which has been fun for her. Miles is busy with school, gymnastics, swimming, and soccer up until about a week ago. He scored his first goal in the last game of the season so we were pretty stoked about that. Bode is still here. We bid farewell to our Subaru which was bittersweet. Miles was pretty shook up about it. After all, it was the car we brought him home from the hospital in! She was a great car but just had some recurring issues, very uncharacteristic of a Subaru, that we got sick of dumping money that we didn't have into.
So our lives move on! It's a beaufitul Sunday. It's 11:30 AM and I haven't showered in two days. It's about that time. 
Thank you for your prayers and support! Peace out for now!

Wednesday, July 1, 2015

God Is Good

God is Good.

I’m sitting in Alec’s I.C.U. room right now as he is getting a good little snooze.  It’s his Birthday today, June 14th, and he is ALIVE.

LIVER TRANPLANT DATE: June 9th-June 10th 2015

Our family will never forget these dates.  I am just going to say it right off the bat, I am pretty sure that I will need some therapy after what we just went through.  I don’t want to relive the trauma that we both experienced, but I know that I need to write down all that transpired, because the Lord was with us. 


I’m not quite sure I can really go into the details of what transpired that day.  Rewriting what we lived through creates a little too much PTSD.  Reliving the trauma and talking about it is completely draining. I would however love to tell all my family members thank you for coming to my aid during his surgery.  Apparently, earlier that morning (before going to the hospital) when I was gagging and sick to my stomach Alec had a little conversation with my Aunt Tori. He told her that while he was in surgery, she needed to get as many of my cousins and family members to come and be with me as a distraction.  He also told her to, “make sure she has some alone time too. She will need that.”  I can’t believe that he was thinking about me while he was the one going into battle.

The date today is now June 30th.    Each time I opened up my computer to write down my thoughts I got too emotional.  I was exhausted.  It was all too recent and fresh to have to relive again. I am happy to say, that while I’m not fully rested, I have enough emotional reserve to begin document our journey. So, here it goes . . .

Monday night, June 8th, 1:00 a.m. in the morning we got a call from our coordinator telling us of a possible liver donor.  This was maybe our 7th offer or 8th offer in both primary and secondary slots.  Due to one reason or another, none of the organs looked right for Alec’s body.  Monday morning, June 8th, around 7-7:30 a.m. we received the follow up phone call that said that its looking like a pretty good chance Alec would be transplanted, and to get to the hospital. 
Miles was asleep, Alec was calm, and I got out of bed and just dry heaved.  My stomach was in knots.  I continued to pace and gag because I was so sick to my stomach.  Reality really hit me hard. My husband is going in to surgery today.  With each transplant surgery, mortality rate goes down.  Third transplants really aren’t common, and therefore not really offered.  The Docs knew that Alec was as strong as they come, and it was his only option.  The odds were against him in all ways possible.  He could live with his diseased liver for how ever many days, months, or years it could provide him, or take a leap of faith and get on that operating table. This meant one step closer to Alec living, or one step closer to dying.  I may not have a husband tomorrow, I thought.  Gag, dry heave, shake, gag. All the while in my extreme nervousness, Alec felt peace.  PEACE! He was a little nervous yes, but overall, he knew he was going to be o.k. This young man’s faith has always been remarkable, and it is what has kept my little family from going completely insane with worry. One of my Aunts put things in perspective. She would tell me to say, we are alive today, so we will be O.K.  (I love it, but I hate it.  Who has to think this way? Ugh, we do). 



We called on our family to come give Alec a priesthood blessing for the healing of the sick before we needed to leave.  His father offered it and it was beautiful. Through Alec, Vince blessed the surgeons to call upon their medical training, to have calm and steady hands, to work together, and to have faith.  He blessed Alec’s body to be strong, including his spirit. IMMEDIATE PEACE FLOODED THE ROOM. All those who were in that room that morning (including myself), cannot deny the witness that we all received that ALL WOULD BE O.K. 


And boy did we need to call on that peace during Alec’s gruesome 28-hour surgery.  (The average liver transplant surgery takes anywhere between 6-12 hours. We were told to plan on 20+ hours due to his 2 previous transplants, scar tissue, etc.) The one thing that Alec had going for him was the fact that he would be asleep during surgery. Not us. His surgery was stressful on all those (far and wide) who knew what was going on. I wonder how many of us forgot to breathe regularly during that day.  

All of the employees on Level 10 (who we have grown close with over the past 7 years) said that while Alec was in surgery there was a quiet hush on their floor.  Everyone was on pins and needles waiting for the next update and the final outcome.

There are so many different roles we all play in this thing called, “Alec Rampton needs a liver transplant . . .again.”  I feel that we are much like the solar system, orbiting around this complex situation, all experiencing similar feelings in different degrees. We are all one in our thoughts and prayers however, and that love is power.  Love, is why he is alive. And why I haven’t fallen apart at the seams. I have never been so close to imploding than in that waiting room waiting for the conclusion of my honey. We had to do our best to keep the feeling of peace that we had all felt earlier. That was why I became a recluse for a little bit.  I am terribly sorry if this ever offended any of you.  I was
afraid if I received texts, or phone calls, or saw the concern and worry in people’s eyes that I might doubt the confirmation I felt from the Lord that Alec would make it through surgery and that everything would be fine. It was difficult to keep the peace in the forefront of my mind.  The day went a little like this: Peace, hope, faith, tense, heart wrenching pain, faith, peace, fear, pain, loss, hope, faith, faith, faith, loss, peace, fear, hope, peace, fear, fear, fear, fear, faith, faith, faith, and finally peace. (Are you carsick yet?)



With the help of Alec’s mother Janice, the day of events looked a little something like this:
June 9th, 2015
·      After being there since 10 a.m. the team came to take him into surgery at 5:15. Janice, Vince, Alec and I signed some papers and talked to his anesthesiologist, Dr. Rust. I told him he seemed cool. He was, and he later proved he was the reason for keeping Alec so stable during surgery. 
·      They wheeled him away in his hospital bed after Alec and I gave each other a kiss and fist pumped in the air.  Now down the hall in a different direction I yell, “Rock it Rampton!” I see his fist appear above the bed pumping in response.
·      8:31 pm: they called to tell us the surgery had begun at 7:06 pm. “Everything was good, smooth but very slow.
·      9:36 pm: Dr. Fujita arrived with the donor organ after he had flown to another state to procure it. Alec was on the O.R. table open, with his surgeons trying to get through all of his scar tissue.
·      11:25 pm: He was stable, good, progressing slowly but smoothly.
o   Now is the time that my Dad, Vince, Janice and I try to get a little rest. I brought my own anti-gravity chair so that I could sleep on that instead of some stupid hard chair.  When Dr. Alonso came and saw the set up that I created, she said, “Clearly, this isn’t your first rodeo.”


   
Midnightish-1:00 am: I manage to roam the halls to see if the hospital beds we passed by earlier were still there. Sure enough, there were about 11.  I can’t imagine 11 people needing surgery at this time of night (ahem, morning), I thought.   I’m sure I can snag one of these mattresses and bring it into the waiting room so I can try to get some sleep. We are in fact paying thousands and thousands of dollars to this place. They can at least put me up for the night, hehe.

Apparently they have had issues with homeless people coming into the waiting room in the wee hours of the morning to spend the night.  So they have been more secure in locking level 2 and checking in. I finally got some sleep in the morning when an employee came in to straighten the room around 6 ish.  Somewhat alarmed, she pointed to sleepy me with a blank expression.  Azure and Ashley (our Nurses that came down to check on us) looked at the lady and sensing what she was about to say interjected with. . ."She's not homeless. We know her."  Haha!
(love these people!)

June 10th, 2015
·      3:19 am: No one can sleep. I called, they called, still stable.
·      6:06 am: Janice Rampton  (J.R.) text messaged her children back and forth to relay the updates we had been receiving- “11 hours in. We’ve had periodic updates through the night that he’s very stable and doing well, but they are having to be so careful in removing the old liver.  About 2 hours ago, they said the old liver had been clamped off and they were carefully mining for the portal vein millimeter by millimeter.  We took that to mean that they hadn’t had to crack his chest this time, but we aren’t positive.”
·      7:19am: (J.R.) “I spoke too soon, they are waiting for the thoracic surgeon to come in and open his chest so they can finish taking out the old liver.”
·      9:35 am: (J.R.) “ Extra prayers!! This is critical.  They are struggling to get this liver out and there is a 1 in 5 chance that they may not succeed.  They are very concerned.  Extra prayers, please.”
·      12:29 pm: I hadn’t heard an update for a while so I called. They called back: They are working millimeter by millimeter. It’s time consuming. They work. He bleeds. They have to cauterize and wait for bleeding to stop. Then continue on millimeter by millimeter.
·      1:40 pm: Lynette (O.R. nurse) calls to check in. She asks me if she can do anything for me.  I ask her to give him a kiss on his forehead.
·      2:26 pm: I called
·      2:49 pm: They call back. Lynette gave him a kiss on the forehead like I asked.  She came into the waiting room to tell me this with a big hug before she left for the day.
·      3:21pm: We need to start blood flow to the new liver, because we are against the clock now with the donor organ being viable.
·      4:07 pm: Dr. Rust (his awesome anesthesiologist) came in and said Alec was stable.  “The surgery is very, very, very, hard, and he’s nowhere near out of the woods.”  He went to pick his son up from the airport from serving a mission.  We would have had him 2 hours less if his son’s plane were on time.  But it wasn’t. It was delayed.  Another little miracle to keep Dr. Rust on Alec’s case for 2 more hours.
·      4:07-6:33 pm:  Dr. Van der Werf came in to the waiting room to talk with us. I saw fear and concern in his eyes. I later find out from someone that he had to take a minute to collect himself before he was going to tell Alec’s family that the odds were against him.  He kept looking at the floor.  I asked if I could come in to the O.R. to just give him a kiss or touch his head.  The answer was no. I said o.k. After Van der Werf left, we later got a call informing us that Dr. Fujita and Dr. Alonso were working on Alec’s liver while Dr. Van der Werf and another surgeon were working on prepping the vessels of the donor liver.   The idea was to try and get the donor organ partially hooked up to Alec so it had a blood source.
·      6:33 pm: They finally got his liver out!
·      8:47 pm: (J.R.) “They hooked everything up, did an ultrasound and found the blood flow wasn’t what they wanted.  They took it back out, redid some of the vascular structure, flushed it (to remove the blood clots and are putting it back in.  Stable. Found blood clots in the organ. Upon treating this they discovered a flap that acted like a heart valve, which blocked the flow of blood into the liver.
·      I couldn’t take the stress. At certain times I was sure I was about to have a massive heart attack at 30 years old.  I wanted to get out of that hospital waiting room.  I couldn’t take the florescent lights any longer.  I was going to scream if I didn’t see new scenery fast. Just finish this already! I thought.  One way or another, but just finish it!  I might explode!
 Azure, one of our nurses and now a dear friend, took me up to T10 (the level Alec and I became familiar with due to his many hospital stays over the past 7 years).  With permission, they blocked off a room where I could just get into a hospital bed and try and rest.  I was a wreck. I was crying and crying.  I asked Azure to come and snuggle with me.  We just cried. Sweet Azure.  She still had to work so I was left all alone.  I called my mom from the waiting room to come upstairs to be with me.  If you can believe it, I think I slept for 20 minutes.  My mom ran home to get my meds.  While she was gone, I almost had a heart attack I am sure of it! Over the intercom a voice said, “Trauma Alert, Level 2, Trauma alert, Level 2.” (Alec was on that level) “Please, oh please, don’t let that be Alec.”  As I exit my room in sheer panic (which happens to be the scary room that I have never liked and have always requested a different room if it has ever been assigned to Alec . . . a whole other story.  But in this case couldn’t care less) Azure comes booking around the corner.  “When I heard that over the intercom I knew you would freak out.  It’s not for him so don’t worry.”  We walk back to my room and lay down again in total angst.  Crap! I missed a call from the transplant nurse.  I call back. 10:50 pm: “He’s out of surgery, the surgeons will come talk to you.”

Azure and I ran fast downstairs to the waiting room.  “He’s out of surgery,” I tell his parents.  Right then, Dr. Diane Alonso comes around the corner.  The first words out of her mouth were, “He’s Alive.”  Clearly emotional but extremely professional, she began explaining their 28 hour operation.
(This is Dr. Diane Alonso, one of Alec's transplant surgeons. She's kind of a big deal!)

There is no way for us to completely understand the creative anatomy they invented to “re-plumb” his body (thank you Janice for the thought process).  Because she is so good at remembering important details, I am going to slide the computer over to her now. Hit it Janice:

With an intro like that, the pressure is on. The thing that I remember most is the fact that it truly sounded like an out-of-the-ordinary creative process. At one point, when things were under the greatest time restraint, they called in another surgeon so that Dr. Alonso and Dr. Fujita were working on Alec to continue the removal of the old liver and Dr. Van der Werf and another surgeon were working to create the lengthened vascular structure to connect to Alec’s systems. Dr. Fujita, knowing that space inside Alec was tight and knowing they would have a difficult time reconnecting things, was able to take additional length of “plumbing” from the donor. This gave them the ability to lengthen connections and create “jump grafts” from the liver to Alec. Because they couldn’t disconnect the older liver without the risk of sudden bleed out, they had to (as we understand it) create and connect the new portal vein above where the original portal vein entered. Dr. Alonso also had to make other vascular connections below the kidneys, which are normally done above the kidneys. She also talked about taking the vena cava and instead of its connection being a standard end-to-end suture, the ends were laid side-by-side and connected. The more she described the unusual connections they had created, the more I saw him as a well-loved patchwork quilt that all of them had worked on. After all of the intricate connections were completed, they released the clamps and watched as the liver began to be infused with Alec’s blood. Almost immediately it began to swell indicating some sort of blockage. They thought it might resolve, but it continued to get worse. The only choice they had was to re-clamp and remove the liver again. (That was the phone call we received at 8:45ish. They removed it, flushed it thoroughly, discovered a small flap of tissue that was acting as a block within one of the veins, removed that tissue and then reconnected everything. Once again, they removed the clamps and waited. Immediately, blood flowed as it should and everything looked good. The main concern was that the donor liver had been out for just over 24 hours. Would it function the way God had designed or had it been tampered with beyond repair. Time would tell. 

Thank you Janice! It sure is nice to have you around!  After Dr. Alonso explains everything to us, she asks us if we have any questions. "Um, can I see him right now?"  She said it would take about an hour, hour and a half to get him all cleaned up and settled in the I.C.U. for all of us to see him. But because she's cool she took me right then and there.  Hand in hand, arm in arm, hug in hug, we walked together to see this beautiful miracle called Alec.  We go to the O.R. to find that he had already been moved up to Shock Trauma. Sidenote: I can't tell you how incredible Dr. Alsonso is.  All of the surgeons and team really.  But when you talk to Alonso once, you love her.  If we were in the school yard picking teams as captains (remember how painful that experience was? Either for you, or for the kid that always got picked last. . .torture) you would pick her first.  She may be a tiny little thing but she is one tough cookie.  Besides that,  I'd actually hate to go against her.  I want that woman in my corner at all times! And I am so glad she has always been in Alec's corner.

I entered his ICU room.  A beautiful feeling of purity and peace filled his room. I KNOW that there were angels in there.  I had prayed for them.  I had felt them.  I had asked that an angel would be with Alec through his surgery.  I asked Heavenly Father to have angels touch and be responsible for every organ in his body, that they might protect it.  His room for the next several days was heavenly. Everyone who walked in there felt it.  (Thank you Heavenly Father).

Alec already looked better than when he first went into surgery.  The transformation is that fast.  He has been neon yellow the past several months, and just a short while after putting a healthy organ in his body,  the change was quite noticeable.  There were about 15 people in his room receiving updates and instruction from Alonso.  They all stared at me, curious of what my reaction might be.  This is the third time I have seen my husband hooked up to everything you could possibly be hooked up.   He was covered with a blanket when I weaved my way through the sea of people caring for him. I stood at the head of his bed, leaned over, and gave him a kiss. Everyone was still working on getting their part done, and so the drape that was covering him came off just a bit that I got to see his chest and abdomen.  The nurse, noticing that the drape fell down a little, looked at me to see my reaction and covered the area.  I said, "It's ok, I can handle it.  I want to be here, and I don't want to be in the way.  So keep doing what you have to do." Although I have seen Alec immediately after each transplant, I have never see his chest and abdomen cavity open.  Yup, open.  After such a long and invasive operation, his entire body was too swollen to be sewn back up (he ended up having 3 more surgeries in a week and a half timeline to close him). He had been medically serand-wrapped (I have no idea how to spell that word and I am too lazy to get out of bed to go to my kitchen to find out).  I couldn't see into his body, but enough to witness that everything was exposed. Because they had to crack open his chest again, I could sense the closeness of his heart beat.  You are not suppose to be able to see your chest thumping that hard.  It was so beautiful and fascinating.  I gazed down to his abdomen.  How on earth are they going to close him.  It looks like he needs a skin transplant now in order to cover his organs! I thought.  Crazy, crazy, stuff.  I took a moment to thank each and every person that had helped pre-operation and post.  They worked their rear-ends off to give me the chance to see Alec one more time, and I made sure they knew I was grateful that they fought to keep him alive.  The next few days would be critical.  They weren't able to get an ultrasound after the second try of hooking it up because he was open.  So he wasn't out of the woods by a long shot.  This night in the ICU would prove if there was any good blood flow to and from the liver because there was no other way to tell.  I asked Vince and my dad to give Alec a blessing and to bless his liver.  Like a tender prayer that Alec's sister, Micah had offered earlier during a critical point in his surgery, they too blessed this new liver to not only survive, but thrive.  And so it has.  Simply put, a miracle.  Everyone in the operating room said prayers all during the surgery.  A nurse called me with an update and asked if I had any questions or needed anything.  I said, "just say a prayer."  She replied, "Do you think we haven't?  Every person in that room has offered a prayer.  We've said about 97!!"  Another person came to me and said, "That was the first time I've prayed in 5 years."  Powerful, powerful stuff people.

Clearly, scientific studies, research, and data indicates a certain time frame where the donor organ is still viable. His was out for about 23-24 hours. Everyone was unsure of the outcome.  It's not supposed to work as it has.  It just doesn't happen. It is supposed to have dead tissue.  His doesn't.  After several biopsies, ultra sounds, lab work, etc. his liver function showed no stress.  I promised Dr Alonso that if she did her part, Alec would do his, and the Lord would do the rest.  Alec has been blessed with a very strong body.  It is amazing what his body has been through.  He promised me before surgery that he wasn't going anywhere and boy was he right.  He shouldn't have made it.  Anyone else in that situation Im sure wouldn't have the same outcome.  He is a fighter.  He is a warrior.  He is a champion, and he is alive.

The transplant team at IMC is phenomenal.  The surgeons are geniuses.  I know that we would have a very different outcome if he went anywhere else.  There is so much love shared between the Docs and us.  We are all a family.  We are so grateful for the relationships and bonds that have been created with each and every person at IMC.


God is Good.  Miracles do happen.  It couldn't happen though with out his donor.  To the donor family: Thank you for sharing your loved one with us.  We could not be more thankful for their incredibly strong liver that continued to function despite the time and odds against survival. But it did, it survived and is thriving. Alec's donor must have been really active and healthy in order to have such a great organ.  We thank you for that.  We are saddened for your loss, we really are.  We are on a completely different end than you.  We are humbled, and hope you know that we will respect this gift that was given.  We will be able to grow our family because of it.  We will honor your loved one by living a happy, healthy, positive life.  That is the only way we know how to repay you.  That, and to be organ donors ourselves.  It says so much about a person's heart.  Thank you for raising someone that was willing to donate and save lives.  That is a hero.  With my husbands strong body and your loved one's strong liver I just know that together, it will produce a long and happy life. We feel it. Thank you and God bless!

Become an organ donor.  We are in desperate need. Alec is beyond blessed to not only receive 1 but 3 transplants.  People die waiting for one.  We know that many don't have the success that we have had. We are sensitive to this fact.  We do not take this gift lightly.  We will do our best to spread awareness so that there are more organs available in ones time of need.

Welp,  this post was long. I had to write it down.  Alec needs to know just what went on while he was sleeping.  And now, at 2:34 in the a.m. I need to get some sleep.

Love you all!  Hope to see you tomorrow for the 5k, 10k fundraiser that our dear friend Geoff Gough and crew have organized.  It's the trail head right by Hogle Zoo. Just park in the parking lot east of the Zoo. You'll find it.  6:45 registration, 7:00 pm start time.

Peace and Love! We are so grateful for this experience (don't ever want to go through it again) as it has taught us and refined us in many ways.  What I am grateful for the most is love.  Alec's faith and strength has reached and taught so many people. Because of that we have received so many blessings and love from all of you.  The world really is a great place filled with love.  It has been incredible to be the recipients to this love.  Thank you. Somehow, someway we hope you are able to sense the gratitude and love we want to give back.  Couldn't have made it with out all of you cheerleaders.  XOXO






Sunday, June 28, 2015

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

Friday, May 15, 2015

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.