Post Transplant Day 3

Ben was up in the chair again today.  He had an ultrasound and X-rays to check for fluid in the lungs, swelling of the liver and to see the vasculature or blood flow in and between the new organs. 

All the tests were good. It was cool to see and hear the blood pumping to his new organs.  

His pain is strong but manageable.

Quote of the Day: “I’d love an icy Orange Crush!”

Time moves very slowly here in the hospital. 

You will notice “Welcome Back” written on the board.  This is because our nurse today is the nurse that did Ben’s pre-op for Transplant here on the floor a few days ago. 

The view out Benjamins window.  If you look closely you can see some of downtown Clevelands skyline.

They have these great cubbies everywhere, they are places for family to meet and rest outside the room.  From this particular cubby I can look out the window and see into Bens room across the way.  I come here to talk on the phone so I don’t disturb Ben but I can still see if anyone comes into his room. I also eat my meals in this little cubby. 

This is what house keeping leaves you here in the transplant unit.  Isn’t it fun?  I told Ben its like a mini cruise animal. Our house keepers are very creative. :). This is made with washcloths. 

Post Transplant Day 2

We have never been under the misconception that this process would be perfectly smooth.  We expect bumps in the road or ups and downs. The last half of yesterday and through the night were definitely one of those down moments.  It was discovered that Benjamin was bleeding from his stomach.  He also had an adverse reaction to his pain narcotics, this caused him to not feel like himself mentally.  He was combative and angry with everyone.  He was very agitated. If you know Ben at all you know this is completely uncharacteristic of him. My husband was with him at the time and he even said it was scary, Benjamin was not like himself at all and they had a very long night!  Luckily after letting the medicine wear off they were able to counteract the effects and he was finally able to rest.  

Things turned around and they were able to get the stomach bleeding under control, change his pain medication and he’s back to feeling like himself again.

The other good news of the day, is that Benjamin was released from the ICU and is now on the transplant floor.  We see baby steps forward and we are grateful for each step.  We feel strength from the prayers and support being offered to us from so many people.

Ben’s quote of the day: “I hurt”

Bens IV Tower

  

Ben finally resting in his private room on the transplant floor.

Video of the transfer from ICU bed to room.  It was a process. :) 

Post Transplant Day 1

Before transplant Ben and I talked about what he wanted shared and how he wanted to document his transplant.  We decided we would give  daily updates via posts and pictures to our social media to keep friends and family updated. We know people care and are following Bens transplant journey.  We also know by sharing Ben’s experience it will help increase awareness about transplants and the blessings of organ donation. 

For those that have found our blog by searching transplants etc. We hope our sharing Bens experiences will be of help to you.  We know we are grateful to the information we have found via the internet of others experiences and the insight it has given us. 

We are also going to share something Ben says each day... as a little Quote of the day. 

Yesterday afternoon Bens breathing was so good they removed the ventilator and he was awake and talking.  This was a huge milestone for him to have the ventilator removed the same day his transplant was finished. He is in a LOT of pain. He is still in the ICU.  Lincoln and I are taking turns sitting with him 24/7.  The ICU has a rule that when they have shift change all visitors must leave.  This is because they discuss patients with the incoming nurse and you can hear a lot of conversation from different beds in the ICU because of close quarters.  This rule helps to protect the privacy of each patient.  Shift change is from 7:00-8:00 am and 7:00-8:00 pm. Lincoln and I are doing shifts.  He covers the night and I cover the day.  So I typically come in around 9:00 a.m. and Lincoln goes home to sleep.  He returns around 9:00 p.m and I go home and sleep.  We feel having someone with him is important because you are the best advocate for your family member. We have always made sure we were aware of any treatment he is receiving and the reason why, especially when Ben himself is not at his fullest mental capacity. 

Today they got him up for the first time and he sat in a chair for over an hour.  It was quite a feat for him to get up.  It involved a lot of helpers and a lot of pain for Ben. 

Quote of the day from Ben...

“I am very very beyond blessed.”

Transplant Day Part 2: Life from Death, Sorrow to Hope

   “Without the organ donor, there is no story, no hope, no transplant.  But when there is an organ donor, life springs from death, sorrow turns to hope and a terrible loss becomes a gift.”

We will always be forever grateful to the family of Benjamins organ donation for their selfless act. Our prayers are with them in their loss and grief.  

Ben’s transplant surgery took about 14 hours. 

What began on February 3rd finished early afternoon February 4th.

After they took Ben into surgery I was shown into a waiting area. I tried to busy myself visiting with Ben’s young friends and girlfriend. We watched part of an episode of the bachelor, funny I know but it was something mindless to distract me.  Around 2:00 a.m. I convinced my young support team to head home for a few hours of sleep, Assuring them I would reach out if I needed them.  Then I went in search of somewhere to try and get some rest. 

A nurse from the OR made arrangements to call me and update me on progress of the surgery every few hours.  During one of these calls she asked me if I needed anything.  I asked her if she knew where I could possible get a pillow and blanket.  She so sweetly offered to bring me one.  

The Cleveland Clinic surgical center has a really nice huge waiting room with couches a small eatery and tons of space. It is a very busy place during business hours but is closed at night, meaning there isn’t anyone at the check in desk, the eatery is closed and it isn’t manned by employees.  I decided to walk over there and see if it was a place I could wait and rest.  It was perfect.  I was the only one there and was able to get some sleep in small increments. As much sleep as a person can during a time like this.  Around 5:00 a.m. the place started to come alive as employees and people started arriving for out patient surgeries. 

A funny little moment.... At one point during surgery the nurse called me from the OR and said Dr. Kareem had a question for me.  He’s a funny guy with a dry sense of humor.  He says to me “Have you been feeding this boy lentils?  I replied no. Dr. Kareem said, his stomach is lined with what looks like lentils.  We determined it was seeds, from all the green salsa Ben would put on everything. :) 

My sleep area/waiting room.  

At around 8 or 9 a.m. Ben’s young friends Brandt and Michael rejoined me in the waiting room. Around 12:00 noon I got word that the transplant was finished and everything went well. They were just closing him up.  I was called into a consultation room to meet with Dr. Kareem.  As I was waiting in the consultation room, in walks our transplant coordinator Anita.  I was so grateful to see her there.  She has been with us from the very first appointment and we have built a very real level of trust and because we have worked with her so frequently we have a very good communication system.  She has come to know us personally, so it was nice to have her there to ask questions after I finished talking with the Doctor.    We love and respect our transplant team, Dr. Kareem, Dr. Osman, Dr. Fujiki, our coordinator Anita and our PA Marissa. 

Doctor Kareem said surgery went well and the donated organs were very healthy.  I was so relieved. They told me Ben would be moved into the ICU and we would be called when we could go up there to see him.  They did remind me he would be on a ventilator and heavily sedated. As I left to rejoin my young support team Anita walked with me to meet these fine young men who had looked after me and were such good friends of Bens.  

I believe it’s a little unusual for them to have patients develop a local support group so quickly and easily.  We truly have been blessed as our church community rallied around and supported us so quickly after our relocation.  Especially for Ben make friends and integrate in the area so easily.  I don’t think they see this in their other transplant patients too often. 

Ben’s friend Scott and Lincoln arrived from the airport just after 1:00 p.m. and within 30 minutes we were called to the ICU to see Ben.

This was our first look at him. He is on a ventilator. 

He has IV access through his Hickman, he had a regular IV in his left arm

And an IJ in the Right side of his neck. 

 They kept him restrained so that he would not pull his ventilator out.  

We were told this is common practice. 

This web of tubes on his right arm is connected to the IJ.

Posted to Facebook February 4th:

Update on Benjamin. 

Transplant Surgery, check!

He did great and is in the ICU!

There is real power in prayer! 

We are forever grateful for all the prayers, good thoughts, love and support you’ve all given.

Keep them coming that he will not develop infection or reject these new organs.

TRANSPLANT TIME

Today started as any other day for Ben and I here in Ohio.

It was actually a nice spring like sunny day for early February.

I was on a walk with a friend when Ben called me.  He asked me “Where are you?” 

I told him I was in the neighborhood behind Heinens, a local grocery store near where we live.

He said, “You might want to head back, I just got a Transplant call and we need to head to the Cleveland Clinic within the next hour.

You can imagine my response.  With heart racing I ask, “Are you serious?”  

My friend and I immediately headed for home at the fastest pace we could walk without running. 

I think she was as excited as I was.  Oddly enough I didn’t feel nervous or anxious. 

I just felt peace. It actually felt really right. 

Ben and I have a process we’ve developed when these calls come.

First call Dad.

Second, we get our to go bags ready.  These have everything we’ll need to get by for the next 48 hours. The first time we did this it was a bit of a scramble but we learned from the first “dry run” what things we would want in our bags..  So it was easy this time. 

This was technically our 3rd transplant call, but our 4th organ offer. 

Third, the other important calls happen, Ben calls and talks with each of his sisters, his cousin Alex, the grandparents and his girlfriend. This is a very tender time, because we know that Transplant surgery is very delicate and risky, so he knows there is a small chance this could be the last time he talks with the people he loves. It is an emotional time as I listen to these conversations and often tears run down my face. 

Fourth, arrange for Ben to receive a priesthood blessing. Luckily Ben has some great friends that met us at the hospital to administer to him. Scott Weber and Michael Mann.  Throughout the next 48 hours Scott, Michael, Irelan Ming Ben’s girlfriend, and Brandt Hansen would make sure I was not alone, had Coke Zero, snacks and company.  These wonderful young people he has met through the young single adult ward made sure I was taken care of until Lincoln could arrive. The only time they left me alone was for a few hours from about 3:00 am to 7:00 am while I tried to catch a few hours of sleep on a couch. And it took some serious convincing for them to leave me alone for that long.  Scott even picked Lincoln up from the airport.  These young men are all Medical/Dental Students, so they are busy boys. Taking time to minister to me was a sacrifice of their time. They truly were angels to me and I am forever grateful for them! 

After our last dry run, we had decided that Dad wouldn’t catch a flight until Ben was actually in the OR and surgery had begun.  This way he wont take time off and travel here and the transplant not actually happen.  

We arrived at the hospital around 4:00 p.m., we were checked into a room where they would begin the gambit of pre transplant preparations.   These include, blood draws, chest X-rays, urine samples etc. and meeting with members of the transplant team to sign consent forms. 

Then we wait.  Wait for the organs to be procured from the donor and to make sure they are going to be the right organs for Benjamin. The donor was in nearby local hospital so there wouldn’t be much time between procurement and surgery starting for Ben. 

I posted this to my social media account:  It’s TRANSPLANT TIME!! At 11:30 p.m. Ohio time they officially started the transplant.  Prayers on Ben’s behalf would be appreciated!  We love you all and are grateful for your love and support! 

We believe in God’s timing!  We have waited with faith in Heavenly Fathers plan for Ben and our family. We know this transplant is happening at the right time with the right organs for Benjamin.  We know whatever the outcome Heavenly Father is in charge.  

Ben and I in the waiting room before being admitted to a room.

Ben’s stomach pre transplant. Having pre-op tests done. 

Trying to relax, talking with his guys.  

Ben and I waiting in the hallway outside the OR just before they took him in to start surgery. 

Our Grand Adventure

Today in our Relief Society Class at church we discussed the talk by Elder Uchtdorf titled “Your Great Adventure”.  He begins his talk with a quote from J.R.R. Tolkien, The Hobbit, and some of his own words, open quote:

A beloved children’s fantasy novel written many years ago begins with the sentence “In a hole in the ground there lived a hobbit.”  The story of Bilbo Baggins is about a most normal and unremarkable hobbit who is presented with the most remarkable opportunity - the wonderful chance at adventure and the promise of great reward.

The problem is that most self-respecting hobbits want nothing to do with adventures.  Their lives are all about comfort.  They enjoy eating six meals a day when they can get them and spend their days in their gardens, swapping tales with visitors, singing, playing musical instruments, and basking in the simple joys of life.

However, when Bilbo is presented with the prospect of a grand adventure, something surged deep within his heart.  He understands from the outset that the journey will be challenging.  Even dangerous. There is even a possibility he might not return.

And yet, the call to adventure has reached deep into his heart.  And so, this unremarkable hobbit leaves comfort behind and enters the path to a great adventure that will take him all the way to “there and back again.”   Close quote.

As I was listening to this lesson I was reminded of the talk and my feelings when I first heard it.  I feel like our family is on one of these Grand Adventures.  Our blog is even called Our Transplant Adventure.  When this adventure began, I knew I would much rather stay in my shire and do my normal comfortable things with my family and friends around me.  I did not want to head out on what appeared to be a scary, somewhat challenging and maybe long adventure. But, the possibility of a great reward, Benjamin receiving a life changing transplant, made the adventure worthwhile.

So 17 months ago we began our “Grand Adventure”, our Transplant Adventure.  I am amazed at how this adventure has changed me and changed my family.  Leaving the comforts of home, family and friends seemed like more than I could handle. But, with faith in Heavenly Fathers plan and the support of so many, I have realized how much more I was capable of.  Being out of my comfort zone and allowing myself to be stretched, has allowed me to be taught and strengthened in ways I cannot describe.  I am forever grateful for the rocky roads, smooth trails and rolling hills of this adventure in my life.  It hasn’t always been easy, but it’s worth it.

We’ve experienced so much.  We’ve now had 3 transplant calls.  With each one we thought this is finally what we’ve been waiting for.  But, for different reasons each organ donor didn’t work out for Ben in the end.   We’ve learned a lot about transplants, the transplant process and organ donation.  We’ve learned that being an organ donor is one of the greatest gifts you can give, the gift of hope and life to others. I’ve overcome my fear of flying and now fly back and forth from Ohio to Utah with the ease of a seasoned traveler.  We’ve visited some beautiful places and seen fall colors like we had never seen before. We’ve met amazing people from all walks of life. We’ve made new friends who influence our lives for the better and we’ve learned that home can be more than one place at a time.

I want to take a moment to thank all of our family, friends, our Utah ward family, our two Ohio ward families, and our transplant team for the support, encouragement and love you’ve shown us.  We have been blessed by the generous hearts of so many.  We have been blessed by the prayers of so many and we are grateful to you all!

On November 22nd Ben and I hopped on a plane headed to Utah for his first trip home in 17 months. It has been wonderful having our whole family in one place for a few weeks.  We have truly enjoyed every moment.  I wish I had taken more pictures, but honestly I was too busy soaking in the family time to think about a picture.  We’re grateful for all the family and friends who came to visit Ben and made his time “home” even more memorable.  In just a few days he heads back “home” to Ohio followed by dad a few days later, and we’ll find ourselves separated by many miles again.  But, we know it won’t be forever.  We know that soon we’ll receive the transplant call that is meant just for Ben. And then we’ll start on the “back again” part of our adventure, which will have new rocky roads and rolling hills and we look forward to each step.

So, with a heart full of gratitude to my Heavenly Father and his Son, my elder brother Jesus Christ I just wanted to share that sometimes the seemingly difficult and long adventure that we are all on is exactly the adventure we need, to change us, and to help us get out of our shire and impact the lives of those we come in contact with. I know that our family’s adventure “all the way there and back again” will be worth every step.

Below are a few of the pictures I did happen to take, in the next day and a half I’ll try and capture a few more.

Oh my heart... I love these two.

My family

Cousins

Smiles

Nintendo Switch time..

Frozen II

Favorite songs from the movie “Lost in the Woods”

“The Next Right Thing”

“Some Things Never Change” 

Your Great Adventure by Elder Dieter F Uchtdorf

The Deep Ends

Written By: Ben

"I want to see mountains again Gandalf, Mountains!..."

I will get back to this quote in a bit, but I wanted to start off with not only a great quote, but a quote from one of my all time favorite movies. Anyways I am going to get right to the meat and potatoes of this post, and don't worry it will include an update on my health. 

A story as always to hopefully express some of my feelings. When I was around six years old we had a hot tub that sat in the backyard around the corner from the downstairs back door. One night after my Pops and I had sat in it for a bit, it was time to go inside. Normally I would get out first and Dad would close up the hot tub, but on this night that was not the case. The cover that went over the hot tub was a heavy brown insulated cover. It slid over half of the tub and then unfolded to cover the other half. On this night Dad slid the first half on and then hopped out to grab our towels whilst I stayed in the warmth of the tub. Well in my young mind I thought I would help Dad by closing the cover on the hot tub, but I was too weak to get out and do it from the outside of the hot tub. So as you can guess I waded to the other half of the hot tub in an attempt to help. Now I need to clarify something, the way this particular hot tub was designed was similar to many others in the fact that it had a significantly deeper portion in the center (truthfully only about three and a half feet deep). As I walked on the shallow outside edges I slipped into the deep middle portion and partially under the already covered half of the tub. Being startled I gulp in a substantial amount of hot water and started to panic.  As I floundered and continued to swallow water I became all the more terrified. Before I knew it I was drowning in the backyard. After what felt like eternities to my tiny self; my Father pushed off the rest of the cover and plucked me out of the evil clutches of the hot tub deep end. 

A few things about this story, one is that truthfully I was only drowning for maybe twenty seconds, and second was that my Father was never that far away.

I am gonna start with the second point, because it flows better in my mind. Truth be told my Dad may not even remember this happening or if he does, he may remember it completely differently. Even if that is the case my point still stands, on that day and many days since then my sweet Father has saved me from more "deep ends" than I can count or dare to admit. 

Now to my twenty seconds of drowning. I don't know how long or short the actual period of time was, but it still serves my purposes. 

This last week has been in all reality, brutal. It has been a very difficult week. I received an infusion that I reacted adversely to; and I have been in a state both emotionally and physically that my family and friends refer to as a "funk". I am sure many of you have felt in one way or another similar to how I have felt this week... Like I was drowning. 

I usually try to be very happy go lucky and positive on this blog and in life, but this post is going to be a little more vulnerable and raw. I like to think I am a positive and cheerful guy probably an abnormally abundant amount of the time, but I also have rare stretches where that is not the case. This last week was one of them, indeed I was drowning heart, body, and soul. Although a lot of people attempt to try and get me out of these funks, most of the time I have to pull myself out or at least it feels that way. 

This last week I was missing home, family, the mountains, a front porch, my motorcycle, my jobs, school, good health, my nice body, in essence "my old life". I don't like to say it often, but I miss being "normal", (even though lets face it, I was never normal). I doubt I can explain it or even describe a semblance of how it feels, but I watch what I thought was supposed to be my life with an envy and jealousy that at times burns more fiercely than any fire can. (Now I want it to be known, and have tried to make it known, that I wouldn't change a thing, but that doesn't alter how I feel sometimes and in truth it is not what I wish to focus on in this post). I always do my best to act tough and put my best foot forward, to "drown smiling" for lack of a better term. I don't like admitting these things out loud, but I feel it is important for others to know what it is truly like, not just all the smiles and good times. Some days it is all I can do to cling to hope and pray for a better world; (Ether 12:4 [Book of Mormon]) just hoping that one even exists for me at the end of all of this. Now I know there is one for me, but even sometimes what we know can be clouded by the stresses and fears of a difficult moment. Indeed there are nights where we wonder if the dawn will ever come, and sooner or later, it always does. In fact I promise that it does, I have been pushed past my breaking point more times than I can count in my life, and especially so in these last few years. Even with everything I'm going through, I live a blessed life that is filled with so many amazing miracles, I can scarce take it in. Indeed my Father in Heaven has never been far from me. 

 Be prepared to be bombarded with pictures of said mountains that I miss so dearly.

 I know everyone says that the Autumn back here in Ohio is stunning, but there will always be a place in my heart for the "mountains of fire" that happen during my favorite time of year. Also this is Wanderer (front) and Traveler (back). Mom is not a fan, but it is something my Pops and I love to do. Riding a motorcycle brings a sense of freedom that is difficult to describe, but astounding to experience (especially when it is on small country roads in the mountains). 

 I have taken many people to both of these waterfalls, and have been to each a ridiculous amount of times, but every time I go back I feel just a little closer to my Heavenly Father and Savior. I don't think I will ever be able to thank them enough for the beautiful and sacred places on this earth.

 I just can't get over how beautiful this world is.

 Zion's National Park in the snow is a sight to behold that I wish people could see more often. The white and red make for an unforgettable sight.

 To end this blog post I wanted to put up a more ridiculous picture. I was attempting to make fun of my little sister who loves to pose for a good "Instagram worthy" pic. Plus I figure after a semi serious blog post it would be good to wrap up with a picture of me just being my nerdy, goof ball self.