Adventures with the Squad

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Guys!! I have a squad!! Yay! Go me!! Haha!! We do so much together…at least we try. I’m so glad that I get to call you my friends, guys! College and work is crazy but you help me stay sane……..er. ;) .

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I’m pretty sure I’ve posted this one before but this is the only picture I have with everyone.

Lewis has been gone this summer so it’s been weird without him but it’s still fun. (Lewis is doing summer sales with his friend. He’s been traveling to Montana, Wyoming, and Colorado… I sure miss him.)

Let’s see… We all went to see Captain America: Civil War a few weeks ago and out for Panda Express. #TeamCap!

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For my birthday, we all got together and celebrated. Aleks and Olivia made me a cake. We ate lots of cake, watched Tangled, (my favorite Disney movie!), and Olivia cut my hair! Oh and we Skyped with Adrian and Aleks’ parents!

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Last week we decided that we needed to go on a picnic. After church yesterday we all met up at the guys’ apartment. We made sandwiches, watched Studio C sketches on YouTube, made cookies, and ate the sandwiches while waiting for the cookies. We drove to Sugar City Park. So pretty!! We ate, laughed, fed the seagulls, played on the swings, rolled down the hills, and learned Spanish. (That last one was mostly Olivia and I. We were trying to say leaves and accidentally said love handles instead. So now my favorite thing to say is “Yo amo tus lonjas!!” Hahaha!)

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We’re a group made up entirely of couples… It’s weird when one of us is gone. They immediately turn into a fifth wheel

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So much stuff!

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Holy cow! There has been so much happening since I blog last! Let’s start from the last post.

April 21, 2016

Okay, so three years ago on this day, I was able to receive an angel heart and get a second chance at life! I can’t believe it’s been three years already. It’s so crazy. I was able to go home the weekend before my heart-aversary. That same weekend was the same as Mom’s birthday. We just squished them together and that was so great!

As tradition, we released pretty bright red balloons.

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I had to go back to Utah for school that week, so on my actual heart-aversary I was with my friends. We went to the store and bought the same kind of bright red balloons. We also picked up some little toys to drop off at the hospital for a group “pay it forward.” We all piled into Lewis’s car and drove up to Primary Children’s. What a fun place to pay tribute, huh? ;)

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April 28 – May 6

This week was a fun one! Lewis’s family invited me to come with them on their cruise to the Bahamas! Oh.My.Gosh. It was so much fun. We all got sunburnded, ate so much yummy food, laughed until we cried, made lots of new friends, and created so many great memories! I was so grateful that the Bowen’s let me be part of their family for the week. (More pictures to come… I’ll give more stories and details in a later post.)

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May 5

Okay, this was the day that we got off the boat but this was by far my favorite day of the trip. We left the boat early that morning so we had several hours to kill before we could go to our hotel. The whole family piled into the car, went to the movies and had the whole theater to ourselves, and then went to dinner. After dinner, we walked over to a really pretty fountian across the parkinglont of the resturant. We took pictures and when we were finished, we just kinda stood there staring at each other. A few seconds of awkward silence, Lewis took my hand to lead me away from everyone else. He thanked me for coming with him on the trip. He told me he loved me. He told me he was grateful to have me in his life. On the word “grateful” he dropped onto one knee and pulled out a ring box. He told me that I had stolen his heart and then asked me if I would keep it forever. Obviously, because I’m head over heels in love with this man, I said yes!! <3 It was so cute! He stumbled over the words in his proposal, I cried, his whole family cheered. His dad called me an idiot for saying yes and his youngest brother shouted “I’m gonna be an uncle!!” Of course, we all freaked out and laughed. Cinco De Mayo is never going to be just Mexican Independance or my brother’s birthday anymore! I’m so glad that my true love wants me to be his for ever!!

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3rd Annual Exam

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We went to Salt Lake last week for Sarah’s annual post-transplant exam. It included two days of tests with a right and left heart catheterization, heart biopsy, EKG, x-ray, labs, echo and clinic visit. We went with worries clouding our thoughts, but tried to hold onto positivity as we entered the hospital. Besides the normal nervousness, we found out last week that two children we know who received hearts the same year Sarah did both have coronary artery disease, heart failure, and are listed for re-transplantation. Kelsen is separated from his brand new baby sister (and recovering mommy) as he lives in the hospital now until another new heart is available. Owen is living (with his mommy) in the CVICU in critical condition, far from stable, and has been moved to status 1A while he continues to fight. This news made us so sad, and a little worried about Sarah’s heart, considering the severe rejection and heart failure she experienced last fall.

We’re happy, grateful, and somewhat humbled to report that Sarah’s heart is still happy. Her rejection is as good as gone. The doctors at UofU said her biopsy was “negative” so we’ll take that as a “healthy, all clear, clean, and happy.” (For the “it-doesn’t-mean-anything-to-me-without-the-number” people like me, her biopsy results were: C1 V2 ISHLT0R pAmr1.) I know that doesn’t look like nothing, but you’ll remember that 1 (and 0) means none and 2 is very mild (and they usually don’t do anything to treat it). So, although it may not really look clean, a “negative” biopsy is what’s in the files! And, we believe the doctors with the files. ;)

Cath0516Her coronary arteries are clean, clear and beautiful. Her pressures were were described as great. I’m still in awe when I watch the monitor during her echoes and see a beautiful four-chambered heart working perfectly. They didn’t have final reports on many of the other tests at clinic, but everything else looked good! They are starting to decrease her prednesone (steroid) again, just a little at a time. We’ll go again in July for another biopsy to make sure the lower dose (down 5mg by then) isn’t causing more rejection. They want to bring her down at least another 5mg, but she hasn’t had the best luck with that in the past, so we’ll take it slow and check things out along the way. She still needs to go in for a check on her liver, a cancer screening with a dermatologist, and an annual “girl exam” in the coming months to make sure everything else is healthy too. With a compromised immune system, it’s super important to have these other things checked annually to make sure there are no problems elsewhere. Not the most exciting plans this summer, but we’ll just have to make my June and July trips to Salt Lake into super fun girl-time shopping trips with a little splash of doctor slipped in.

This past week I’ve been thinking…. This world of medically-fragile children we entered 23 years ago is a vortex of emotion. It’s filled with tears of sadness and joy, prayers of comfort and gratitude, moments of hope and despair. And often, like last Tuesday, there’s a tinge of guilt that clouds the happy news of stable and good health. Just as we absorbed the great news that Sarah’s heart is, in fact healthy again, I saw a Facebook post of about our little friend Owen that his mommy was waiting outside the OR to see if the doctors were able to save him following cardiac arrest. My heart hurt, and as I said a quiet prayer for her, I also added my gratitude that my daughter is healthy. …And then there was the guilt…. (It reminded me of the feeling I felt years ago in the NICU when our baby got to go home and so many others didn’t.) I can’t figure out why it so hard for me to keep those things separated in my mind and heart…. My happiness and gratitude have no connection to her pain and despair. Yet, my happiness somehow felt inappropriate in my heart, even though I know in my brain that it isn’t. It’s a compassion conflict that I’ll have to keep working on. Probably always. As long as there are abundant blessings in my life and people around me struggling…..

sharp34-everything-will-be-okay-in-the-end.-if-it-sharp39-s-not-okay-it-sharp39-s-not-the-end.-sharp34-plus-an-interview-with-amie-valpone-of-the-healthy-apple-about-living-positively-with-lyme-disease.I am so very grateful for Sarah’s good health, her beautiful future, and her gift of life. I pray for it to continue, and that her journey will continue to have countless happy reports. I also pray for Owen and Kelsen and their families, that they’ll have the strength and hope to endure their individual difficult journeys. We have learned that the collective power of faith and prayer is powerful. Please join me. Pray for acceptance, for comfort, for hope, for love, for health…for whatever God has in store for them…. This is one of the many inspirational quotes I have hanging on my bedroom wall.  I love it. Whatever the struggle is, just keep hanging on until it’s okay.

~Julia


Pay It Forward

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SeanMcGrath2Sarah was given an extraordinary gift three years ago… a second chance to live life. The miracle of a perfect angel heart given among grief and loss of a loved one on April 21, 2013 changed our daughter’s life forever. We hope to honor the life of her anonymous donor by encouraging all who can to “pay it forward” with a random act of kindness in Sarah’s name. We hope this sharing of love will have far-reaching effects.

photo credit: Sean McGrath


Hi Ho, Hi Ho, It’s Off To Work I Go

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After almost a year and a half of living in Salt Lake, I finally have a job. On top of that….I ABSOLUTELY LOVE IT!! I work at Claire’s in the City Creek Mall. Its about a ten minute walk from where I live so that’s nice. I have been learning how to open, ring up customers, do returns and exchanges, report damages, piercings, freights, deposits/bank stuff, and close. It’s been super fun. Since I’ve started, I’ve had the opportunity to work 9 hour shifts, slow days, really busy days, and normal days. I can’t decide which days or hours I like best. They all have they’re own pros and cons.

The girls I work with are so great. They are all super sweet and helpful when I have questions or mess up. I really love working with all of them! We all have different personalities, obviously, but we get along pretty well together. (I haven’t experienced any drama yet… Haha!) We were having a conversation the other day about how different all of our styles are and how great that is for our clients. If they know what style they are looking for, they can come and talk to the one that has similar taste. It’s cool.

This was are Easter picture that we sent to the Big Boss. :D

This was are Easter picture that we sent to the District Manager. :D

 

I have pierced so many little ears already, too! On one of my shifts, a little sister of someone I was piercing pointed out to her mom that I didn’t have my ears pierced. Another time, a little girl asked if it hurt to get the earrings put in. And another little one asked how old I was when I got mine pierced. Last week, I decided that I probably should get my own ears pierced… I told my co-worker and she got so excited. She told me that she wanted to be the one to do it. The next day, an older girl came in to get hers done. I asked her how old she was and she replied, “14.” I smiled and said, “You’re going to have to tell me if it hurts… I’m thinking about getting mine pierced soon.” She asked how old I was and I told her that I was 22. She giggled and told me that she would report back. With that, I finished her up and she wandered around the store for a little while. When she was done, I met her at the register to ring her up. I asked how they felt now. She told me that they were a little sore but that it was worth it and that I defiantly should do it! That was it. I figured, if I can have millions of shots/ivs/pokes, chest tubes, and a freaking heart transplant, that I could handle a dinky little piercing gun. I was going to do it last weekend (all six of us were there and the others wanted to watch and be moral support) but I remembered that I had a biopsy that next week. So now the plan is to have Maddie pierce my ears this weekend when the store gets slow! Yay!!

School is still going well. I really like the two classes I’m in. Megan is leaving to go back home when the semester is over. She got her mission call!! She’s going to Paraguay! I am so excited for her, but I sure am going to miss her.

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With her being gone, I will get a new roommate. One of my best friends from Idaho is coming down to start the med program at LDSBC, so we’re both hoping she’ll be my new roommie. If not, fingers are crossed that I will get my own room which might actually be good because I’m never going to be home. I signed up for 10 credits next semester plus I’ll be working part time. Hopefully I won’t die. Haha.

Lewis and I are still going strong. We celebrated our first year anniversary last month. It’s crazy how fast time goes when you’re head over heals in love with someone. I still get butterflies in my tummy when he smiles. Sure love him lots.

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So, there’s a quick update on my life. Have a fabulous week!! :D


Get ready to cry…

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Warning! The title is very accurate. Best be getting the tissues out and ready.

One of my classes I’m taking this semester is Jesus Christ and the Everlasting Gospel. It’s been such a fun class. I love studying the words that teach of Christ. I have felt that as I’ve studied the life of my Savior, I have defiantly come closer to Him.  In preparation for Tuesdays’ class, one of the assigned readings is to study Elder Holland’s talk None Were With Him given in the April 2009 conference. I just have to say, this is one of my favorite talks! I just love it so much! I can’t tell you how many times I have studied and learned something new each time. If you haven’t read it yet or even recently, I encourage you to clink on the link and go read it now!!

 

Artist: Adam Abram

Artist: Adam Abram

 

Background to the talk: Yep, I thought that I should give a little “what’s happening” before diving in. Haha. Okay, so, this talk is about Christ and His suffering in the garden (this can be found in Mark 14:33-36, Luke 22:39-46, John 15:13, 1 Peter 3:18, 2 Nephi 9:22, Mosiah 3:7, lma 7:11-13, Doctrine and Covenants 19:15-20, and Isaiah 53:3-5). Christ and His disciples had just finished the Last Supper, Jesus knew that it was almost time for Him to be brought before the people to be crucified. Before that could happen though, He had to go into the garden of Gethsemane and suffer for all Gods’ children. 

As I said before, I’m not sure how many times I have read and studied the teachings in these amazing words. On the way home from church I was prompted that I should do my religion prep today instead of waiting until tomorrow. I’m not sure why I was prompted to do it today but I’m so grateful that I listened to the Spirit! I just wanted to share some of the insights that I found today while reading.

Elder Holland says, “His sweat came as drops of blood as He pled with the Father to let this crushing, brutal cup pass from Him. But, of course, it could not pass.” This really stuck out to me because I have a personal witness to this exact thing. I remember as I was preparing to be listed for my angel heart, there were several times I prayed and even pleaded to my Father in Heaven asking Him to take it away. I knew that He had the power to do just that. I thought that if He did love me, He wouldn’t want me to hurt anymore and take it away. Well, obviously that’s not the case. Sometimes our trials and burdens seem too hard to carry. More often than not, we will ask our Heavenly Father to make it go away or just make it better. Because He does love us, our Father will sometimes tell us no. It can be hard to understand how that is showing us love but He tells us no because He knows how things will turn out. He knows who we have the potential of becoming. He will tell us that we need these hard things because it will turn us into a better person…and closer to becoming like Him.

Now I speak very carefully, even reverently, of what may have been the most difficult moment in all of this solitary journey to Atonement. I speak of those final moments for which Jesus must have been prepared intellectually and physically but which He may not have fully anticipated emotionally and spiritually—that concluding descent into the paralyzing despair of divine withdrawal when He cries in ultimate loneliness, “My God, my God, why hast thou forsaken me?” With all the conviction of my soul I testify that He did please His Father perfectly and that a perfect Father did not forsake His Son in that hour. Indeed, it is my personal belief that in all of Christ’s mortal ministry the Father may never have been closer to His Son than in these agonizing final moments of suffering. Nevertheless, that the supreme sacrifice of His Son might be as complete as it was voluntary and solitary, the Father briefly withdrew from Jesus the comfort of His Spirit, the support of His personal presence. It was required, indeed it was central to the significance of the Atonement, that this perfect Son who had never spoken ill nor done wrong nor touched an unclean thing had to know how the rest of humankind—us, all of us—would feel when we did commit such sins. For His Atonement to be infinite and eternal, He had to feel what it was like to die not only physically but spiritually, to sense what it was like to have the divine Spirit withdraw, leaving one feeling totally, abjectly, hopelessly alone.”

As we go throughout our lives we sometimes feel like we are alone. Absolutely and utterly alone. “No one gets it.” “How could they?” “They haven’t experienced what I have…” Trust me, I’ve been there. I know that Christ suffered in the garden truly alone so I would know that I have never and will never be alone.

Christ’s atonement is so important to me.  I have had several opportunities to use His glorious power to help me overcome my trials. Every time I think about Christ suffering in the garden for me, I am overcome with an enormous amount of gratitude. Last week, Sis. Wixom (yes, THAT Sister Wixom, the General Primary President) spoke at the devotional. She told a story about a primary class full of busy little boys. One week, the teacher figured out who the “ring leader” was. She quietly went over to this little boy, put her hands on his cheeks and whispered, “Jesus suffered and died for all of us. But if you were the only one, He still would have done it.” That thought really hit me. I have thought about it like that before but for some reason, the way Sister Wixom said it made me actually consider how much my Savior loves me. I know that this sacred act was part of the plan of salvation. I know that without His Atonement I can’t go back to live with my Father again. I am so grateful for that Christ had the courage to say, “If my not my will, then thine be done. Matthew 26:39


Perseverance and Matters of the Heart

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20160127_145533_resizedAn opportunity to share our story came about again last November. Alaina, the editor of a monthly local magazine called Portneuf Valley Connector, attended church with us and kept track of our family during Sarah’s transplant. She contacted me and asked if I would be willing to write an article about perseverance for her January issue that would highlight a handful of suggested character traits to further develop in the new year. I have always enjoyed writing, and was happy to help her out. I was also excited about the opportunity to share our story and have something published that I wrote myself. When I finished my article, it was 3 times longer than the 500-word target she had given me. I edited it yet again and cut roughly 500 words out, but it lost so much of the emotion in our story that it just didn’t feel right anymore. Plus, it was still at least 400 words longer than would fit in the space she had saved for me. I submitted both versions and left it up to the editor. Alaina decided that my article needed to be published in its entirety and asked to run it as a feature article in February instead. I was really very humbled, but also very excited!! Being heart month, it was especially timely, and so cool to see in my mailbox when it finally came! (It was a little startling and unnerving to me that I ended up being the “Cover Girl”. I thought my picture was going to be a little square one at the bottom, like January’s had been. Uh, nope.) Since it’s a local magazine that only part of the Portneuf Valley gets to read, I asked for a digital version that I could share. So, here it is. My first published article. Three weeks later, it’s still a little surreal. But I think when I grow up, I’d very much like to be a writer. :)

~Julia

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The Things I’ve Realized

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DonorDayFebruary is The National Heart Association’s Heart Month. February 7th-14th was Congenital Heart Defect Awareness Week. February 14th (besides being Valentine’s Day) was National Donor Day. I decided this year not to write Facebook or blog posts listing all the horrible things that come with heart disease, heart failure, or congenital heart defects. The numbers are disheartening and the statistics aren’t pretty. Anyone who’s read this blog the last three years knows and understands to some degree what those are. (If you are new here, and want to know more, please visit any or all of my posts of Februaries past. 2013 / 2014 / 2015  There’s a lot of heart-string tugging in the reading.) So although I didn’t spend any time writing about it last week, I did do a lot of thinking. I wanted to share instead just a couple of the incredible blessings from our journey that I’ve come to realize this week.

  • Practical knowledge – Before our heart baby, I didn’t know how a heart even functioned, let alone its intricate anatomy and how miraculously it works. I didn’t know how to help a skinny kid on a fat-free diet gain weight. I had to figure out how to avoid tripping over 100+ feet of oxygen tubing stuck to my toddler’s face and threaded through my house. I didn’t know the difference between a peripheral IV, a central line, and a PICC Line, or what TPN, Lipids, IVIG, or Thymoglobulin was. I didn’t know that heart failure causes collateral damage to other organs, or that intestinal disease and liver damage could heal with a healthy heart. I learned how to measure medicine and give shots, track vital signs, and watch for adema and cyanosis. I didn’t know that my daughter could be so strong and brave. (And I didn’t know I could be, either.) I didn’t know how incredible the love of family and friends could feel. I didn’t know very well how to reach out and serve people that are struggling until I learned what others did that helped me. I didn’t know that someone would be willing to make a very difficult choice in the midst of a tragedy that would completely change my daughter’s life and give her a second chance. I didn’t know how close my Savior was, or how completely His love and grace could comfort and heal me and the people I love. There were a lot of things I didn’t know before this journey started. I didn’t know that I needed to know them. I’m so grateful I do now.
  • IMG_5831My family – They are everything to me and I love each of them with all of my heart. (How is that possible?) In the beginning, it was just the three of us. Mommy, Daddy, and Sarah. We clung to each other through the first couple of years with her diagnosis, unsure future and first four surgeries. When it was time for her next one, we were a family of four. Rachel was almost two, and loved spending time with grandmas and grandpas, aunts and uncles, and anyone who adored her. When Sarah was sick as a teenager and throughout her later stages of heart failure and transplant, we were a family of seven. It had been so long since we had to do the hospital scene, we weren’t very sure how to do it without the three of us clinging to each other in the sterile rooms of the ICU like we did in the beginning. We learned the hard way that we had to keep some sense of “normal” at home. The four children left there to worry and wonder had to have someone to cling to as well. Grandma and Grandpa were blessing for sure, but just not the same as Mom or Dad. Our “period of separation” was probably the most difficult part of the whole journey for our family, but it was so very necessary. We learned what was most important to occupy our time, and our family always rang in at #1. The house was dirtier than it used to be, we ate cold cereal for dinner a lot more, and we told a lot of people “no” when asked to help with things. I think we even skipped school a few times. Above all, we most definitely cuddled more, went out for treats more often, and made sure the words we spoke were soft and kind. We always looked for blessings and miracles–things to be thankful for, especially when things seemed hardest. We worked together, played together, and fasted and prayed together. We learned to talk through our frustrations and fears and rely on the other members of our family to help us be strong. We believe that families can be together forever, and we’re grateful that we have learned how to love unconditionally and completely. Forever would be a really long time if we didn’t love each other so much!

So, this Heart Month, instead of feeling sad for people like us who have been touched by congenital heart defects, heart disease, organ failure, or other life-altering struggles, take a few minutes to think about the things you’ve gained through your own struggles. Maybe you have also learned things that you didn’t used to know. Like us, maybe you’ve learned to look for tiny blessings to be thankful for, or how important it is to love your family a little better and squeeze them a little tighter. Most of the heart families I know wouldn’t want you to feel bad for them. Most of them are actually grateful for their struggles because of how much they’ve gained, and what they’ve become through their experiences of struggle or loss. But just in case they need it tonight, please think of them. A prayer wouldn’t hurt, either.

~Julia


Rejection and a Tough Cookie

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October 29, 2015   Sarah’s having her first UofU heart biopsy and cath this morning. She was a little nervous, but so far the experience has been much warmer, kinder, and better than we had anticipated. Praying for good results. But if not, then the ability to accept them with faith and courage.

That’s what I sent out to our extended family the morning of her biopsy. Sarah suspected things weren’t quite right, but we had no idea things were…so bad. Here was the follow-up post later that day.

Sarah’s numbers from the cath indicate rejection. We don’t know what kind (cellular or antibody induced) yet, but they want to get treatment started right away. Checked into the University Med Ctr for a few days for high doses of steroids. We’ll get biopsy results later today and make a more complete plan. We’re disappointed, but very pleased with her doctors. Dr.Omar said in broken English, “Do not cry….. We will get you better.”

The following day, after we had a little better idea of what was going on, I updated our “Primary Children’s Heart Transplant Family” on Facebook with this post:Nov 1 2015

October 30, 2015   So, we came to the U for biopsy and clinic yesterday and ended up here. For a few days. Severe cellular rejection is the villain, Dr. Omar is our new hero. Still waiting for DSA and antibody mediated rejection results. Sporting a new PICC line, a lovely super-sized gown, and growing roid cheeks. Also, lost 4 pounds of fluid overnight. Sarah’s smile is back!

And this one to explain a little better for our family:
Doctor said Sarah is responding well to the medicines. Another dose of thymoglobulin (the stuff that grabs and destroys antibodies) and IV steroids today, and another one tomorrow. Planning to keep up med changes (higher doses) through the weekend and do another echo next week to recheck progress. If everything looks good, they’ll discharge her. She’ll be in for another biopsy in two weeks to check rejection again. For now, she’s feeling good, happy, and doing well at the big kid hospital.

This is the post we made for the “world” on our personal Facebook pages. It was immediately flooded with comments of support, love, and prayers on her (and our) behalf. I’m constantly amazed at the brigade of soldiers we have standing ready to offer faith, service and love.

November 1, 2015   Thursday’s heart transplant clinic didn’t go as well as we had hoped. Sarah’s biopsy and exam showed severe cellular rejection. They checked her into the hospital and immediately began treatment. She has responded well and our experiences at the big kid hospital have been good. We’ll check tomorrow and see how things look and do a biopsy again in two weeks. Her awesome doctor expects a full recovery. Counting our blessings, trusting God, and holding each other tighter.

Two days later, this was our follow-up post for our Facebook friends:

November 3, 2015   Today I’m grateful for the miracles of modern medicine. Five days ago, Sarah was checked into the hospital with labels like “severe rejection” and “acute heart failure” and today we’re taking her home. Without any IVs, oxygen, or medical equipment. Her heart is getting better and her body is no longer reacting so negatively to whatever set it off. So in a while, we take our sweetheart back home for a do-over with a truckload of medicines and hearts full of hope and gratitude.

Nov 1 2015BAnd our family’s message that same wonderful day:

Sarah’s going home! She’s got a bit to go before she’s all better, but definitely on the right track now. Going home today with a truckload of meds, but no oxygen, insulin or IVs. We’ll keep track of her at home in Idaho for a little while as she recovers and gets her strength back. She has another biopsy and re-check on the 12th. Thank you again for your love, faith and prayers. As Steve’s dad once said about Sarah’s journey, “Every day there’s a bump and a miracle.” Love you.

So we took her home and loved her. We helped get her back on the right track and get lots of rest while her heart continued to heal. She was back on most of her post-transplant meds from two and a half years ago, and her immune system was totally shot again. It really was kind of like starting over. A do-over. Only this time at home.
Here is the follow-up message we sent out and posted to let everyone know how she was doing following her next biopsy.
November 15, 2015   Just wanted to give a report of Sarah’s heart’s happiness level. She had another biopsy last Thursday. They found that the treatment was successful in helping to heal her rejection. It has changed from severe to moderate, an improvement we are very grateful for. They have decided to keep her on the increased doses of meds for the next month to continue this trend. They plan to do another biopsy in December, about a month from now. The doctor gave her permission to go back to school, where we hope she will be able to make up enough assignments to finish out the next 4 weeks of her semester successfully. We pray for this, as well as her good health in a more immunosuporessed lifestyle, continued healing of her heart, and of course, the intense gratitude we have for her new heart and second chance at life. ♡ Thank you so much for your love and prayers.
Since then, her rejection has slowly and steadily improved with each biopsy. In case you forgot what the numbers mean, C=cellular or needs medicine level changes and V=vascular, usually has something to do with antibodies, and is much harder to treat. Apparently, those two letter/number combos are unique to the Utah medical system. The scale goes from 1 to 5 (1 = 0, meaning none… no clue why). The ISHLT(-)R and pAMR(-) are numbers used internationally that show the overall rejection level.
  • October 29 Biopsy results: C5 V2 ISHLT3R pAMR2
  • November 12 Biopsy Results: C3 V3 ISHLT3R pAMR2
  • December 28 Biopsy Results: C2 V3 ISHLT0R pAMR2
  • January 26 Biopsy Results: C2 V2 ISHLT0R pAMR0
tough cookieWhen looking at the October biopsy results, it’s no wonder they were using scary words like “severe cellular rejection” and “acute heart failure”. She was a very sick girl again. But, as you can see, the numbers keep going down–and each time they do, she’s closer to a clean biopsy, and a healthy happy heart. I’ve been looking back at some of her posts where there was rejection we were treating (November 2013 / January 2014 / June 2015) and realized that she’s at a point in her recovery that we can breathe much easier now. Perspective is everything. I was a little concerned yesterday when she told me that the transplant team decided to reduce her steroids and some of her anti-rejection meds (which means also take her off her other prophylactic meds she will no longer need on the lower doses). They also decided to wait two months this time for another biopsy. I wanted to see zeroes all the way across before they loosened the reigns. But now I realize it’s time to trust and allow the angels in white lab coats to work their magic. One thing I’ve learned through this experience is that the doctors and transplant team at the U really do know what they’re doing. She’s in very good hands here. They have earned our respect and gratitude. Dr. Omar was right. They did get her better.
~Julia
P.S.   In case you’re wondering, Sarah missed about 3 weeks of classes during the hospitalization and recovery period in October and November. She was able to make up work in a few of her classes, but had to medically withdraw from one, and take an incomplete in another. Her good grade in that class is frozen until she makes up some class and project time this semester and then she will earn the grade she deserves, instead of one that reflects three weeks of missed classes. The other one, she’ll have to re-do another semester. She’s back in school again for her 4th semester and looking for a job now, too.
        Also, the most awesome thing happened with her recent procedures. The anesthesia she received on the first in October made her an emotional wreck. For the 2nd one, they used something else that made her super nauseous. The third time, her coordinator suggested that she just take a little Valium for her anxiety prior to her appointment and try the cath and biopsy without any anesthesia. It was amazing. She has done the last two that way, and comes out of the procedure happy, hungry (eating and drinking immediately), and wide awake. Don’t tell, but last time she recovered so quickly, we just “chilled” there together in her little recovery station and watched a show for a while to kill some time before her clinic appointment. :) It’s awesome to see her courage, growth, and trust in the team that is caring for her. She truly is one tough cookie.

All About Megan!

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Meet Megan! I’m not sure why but one day she just showed up with her stuff everywhere. She insisted that she was my new roommate.  I didn’t want to argue with her about it because she’s kind of scary… Haha! Just kidding. She’s an absolute sweetheart! She is so wonderful and I love having her as a roommate!

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Living with her the last three months have been so much fun! We have decided that we’re not very good influences on each other though. When it’s homework time, we goof off and don’t do anything. I sure have loved having her around. She’s from California. She loves Disney, Netflix, Taylor Swift, and Chick-fil-a. She makes me laugh, both with and at her. We have spent several long nights talking, laughing, and playing games.

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After living with her for three months, I have discovered that she gets weird when she’s sleep deprived. We have so many jokes! My favorite thing is when she has no-filter and tells me secrets. BACKSTORY: So, for about two weeks I have been getting these random emails for websites that I haven’t even been to. The other night, she said, “Sarah. You’re going to kill me but I was doing a research paper for class and I subscribed you for like ten different economic and investing websites.”

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 There was one time that we were doing homework and realized that it was about one in the morning. We decided to go to bed, she checked the weather. “Sarah!! It’s going to rain at 2! Get out of bed. We are staying up!!” That’s what we did, we stayed up and played games. When two rolled around, we looked outside and to our disappointment, there was no rain. We grumbled and got into bed. We stayed up for a few more hours talking and laughing. It was fantastic….until our 10 o’clock classes came the next morning.

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Megan, you were a cutie little freshman when I first met you. You had no friends, so I let you borrow mine. Look at you now! You’re all grown up! No longer a freshman…or cute and little. Haha! You have your own friends (and I know you pretend to not love mine more). I love you so much. Here’s to three more months of living with one of my best friends!

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