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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Obligatory Update…

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Hey everyone! I know it’s been a really long time since I posted on here. I apologize for that. I’ve been super busy with a 15 credit semester, getting a new roommate, my boyfriend (*Wait! She said boyfriend?!* Yeah, I did! He’s a cutie too…), loosing wisdom teeth, the lack of a personal computer. I know, that’s a big list. Let me catch you up.

What to start with… Let’s get the fact that I have a boyfriend sink into your minds. Yup, it’s true!

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HERE’S SOME WEIRD PICTURES TO PROVE IT!!

His name is Lewis. He’s from Arkansas and served his mission in Illinois. He currently works for the church in the West Office Building in the IT department and is pursuing a entrepreneurial degree at the BC. We’ve been dating for about eight months. It’s crazy!! We met though a mutual friend at school during a social event that neither of us wanted to be at. But because we are good people, we went to support said friend, met each other, texted constantly, and then eventually (okay the next day) I asked him out. Since that day, we have been pretty much inseparable.

I think this post is going to be about JUST him. He deserves his own. Yeah, this post is just going to be about little stories, silly things we do together, and pictures. I will (hopefully) post about Megan and classes another day.

Okay, so this is how it’s gonna work:

  1. I will post a picture (not necessarily in chronological order)
  2. I will tell a story about the picture
  3. You will fall in love with our stories

Ready? Let’s do this!!

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This was the week that I met his family. They had traveled from Arkansas to Utah so his siblings could be at EFY. His parents took us to the Manti Pageant with them. It was a really late night but it was fun. I had never been before, so that was a cool experience. His youngest brother ended up falling asleep on my lap. I think by the time his family went home, they decided that they liked me. His dad said that I could stick around. That’s gotta be a good sign, right?

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In June my best friend/cousin/sister Shannon got married to a wonderful guy named Jesse. That’s a cute love story too, but for another time. Hehe. Right before this picture was taken, I caught the bouquet that she had thrown. Just after that, Jesse threw the garter and Josh (my little brother) caught it, had no clue what it was, and gave it to Lewis. I was giggling but totally died after Lewis looked at me and said, “So I guess we’ve got no choice now, eh?” We both laughed really hard after that.

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Okay, this year’s birthday was my very first one away from home without my family. The night before my birthday, my sweetheart took me to Barnes and Noble (my favorite store next to Hot Topic) and told me that I could choose a book for my birthday present. I carefully chose my “birthday books” and then gave him the two that I couldn’t choose between. I told him my dilemma, he smiled and walked over to the register. He bought both books!! After we were done, I asked if I could have one of them so I could start reading it. He gave me a really hurt look and told me no. He wouldn’t give them to me because it wasn’t my birthday yet.

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Part II: The next day on my actual birthday, I had finished one of my morning classes and was headed out of the classroom. I was caught off guard when I ran into our friend Cory. (Normally Lewis would be outside waiting for me so we could go to the cafe for an early lunch.) Cory told me that Lewis was in some meeting and that I had to go with Cory to find him. So totally oblivious, I followed Cory around the school trying to find my boyfriend. While we were wandering around the school Cory’s phone rang. It was Lewis! He had called to tell Cory that his car broke down and that we had to go find him and help push his car back home. This was when I had a feeling something was up. When we got outside, Lewis called Cory again to tell him that he was in the cafe. Totally confused and suspicious, I obediently went with Cory across campus to the cafe. There were balloons and streamers on the railings that led downstairs to “our spot”, a present bag and ice cream cake on the table, and friends gathered all around. It was such a cute surprise.

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 Because “Red Death Week” was upon us, I was curled up on his couch pretty much the whole time. I don’t tend to eat much of anything while my body gently reminds me that I’m a woman. I was starting to get hungry but nothing sounded good. Lewis was listing off food that he could get for me when one of our friends randomly shouted Panda Express. That was it! I wanted that! So, my guy  went and got me some VERY yummy dinner. I will always remember that sweet act of love.

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The break between Summer and Fall semester was a full month long. I got to go home and be with my family again, but he was stuck in Salt Lake working. We had such conflicting schedules we weren’t ever able to coordinate a time to visit each other. That didn’t stop us though! We texted, talked on the phone and/or Skyped every single day. It was rough but we got through it and our relationship is stronger than ever!

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This one is pretty simple. He picked me up for breakfast and we were matching. His face when I walked out was the cutest thing ever! The really funny thing is that we both admitted to changing our clothes two or three times that morning before finally settling on what we actually wore. We have matched without planning several times since then.

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We went grocery shopping a few weeks ago to pick some stuff up for me. I wanted fruit snacks so I wandered over to the aisle and just stared at the shelves. A few minutes later, Lewis came up and asked if I had chosen a box yet. I looked at him and said, “I don’t remember what kind I like…” (I’m weird and will only eat the see through gummies.) He grinned and pick up a box of my favorites.

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For FHE one night, our ward was supposed to go to the Salt Lake cemetery and take a tour of where the prophets are buried. It sounded really fun but sadly, we got rained out. Instead, we all went to see Meet The Mormons at the theater on Temple Square. I had already seen the movie but it would be fun to go just so I could be with friends. We went and had a grand old time.

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This is a picture of David. Not Lewis. Lewis wants to recreate this though…

We all (everyone who has eyes) tease my cutie about being David Archuleta. He looks a lot like him, especially at first glance. We will all randomly call out “OHMYGOSH! IT’S DAVID ARCHULETA!” at random times where ever we are… It’s really funny to watch him freak out and hide. He won’t admit it, but besides being a look-a-like, he has a gorgeous voice (even when he’s goofing around). Whenever a song by David comes on either the radio, iPod, or Pandora, he will sing along. It’s super cute and it makes me giggle.

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I know I say this a lot but I sure love him. I am so grateful that he is in my life. I know this is really cliche but I don’t know what I would do without him. He has become my friend, my love, and my world.  He has made me absolutely and ridiculously happy.

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I love you! <3 <3 <3

 

 


Finale

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About a month ago (boy, how time flies…) Sarah had her very last appointment with her beloved transplant team at Primary Children’s Hospital. I can’t believe we’re at the point of closing that chapter of our lives and moving on. It’s been in the works for a long time now, but it’s still hard to let go. Lots of newness coming our way!

Sarah’s annual heart cath and biopsy went amazingly well. Having not had one for so long, she was out of practice and a little nervous. She had told the nurses that she wanted some versed (we call it happy medicine) to help her relax before they took her in. By the time the anesthesiologist came to talk to us, though, she had decided she was fine and didn’t want it after all. There is something amazing that happens as your medically-experienced child grows up. It’s incredible to see how she’s learned to cope with and now let go of the anxiety of these procedures. It was fun to watch her walk in and greet everybody like she owns the place and joke with them about the doctor’s bad taste in music. She did so great, and whatever they gave her to help her sleep during the procedure was a magic cocktail. She woke up feeling good, alert, happy, and totally nausea-free. That made her recovery so much easier. Her heart pressures were nice and low, coronary arteries wide open and beautiful, stent stable and strong, and labs were all wonderful. Most of her numbers are perfect. Better than they’ve ever been. There were NO donor specific antibodies (DSAs), which we were especially grateful to know. Her angel heart is healthy and happy in its new home.

And yet… biopsy results came back showing mild rejection (C2 V3 ISHLT0, pAMR2). It’s a puzzle to me how everything can look so perfect in every way and the biopsy still comes back like this…. The team (together with her new team at the UofU) decided to not change anything. They figured the rejection was a direct result of lowering her Tachrolimis (Prograf) dose (one of her anti-rejection meds). They brought it down a month before her biopsy to see how her body would react. They need her at the lower levels by now because higher doses of that medicine can cause lots of other problems if taken long-term. This is truly a balancing act and makes me grateful for the practiced and meticulous acrobats that handle her care. They added a new cholesterol medicine to keep her arteries clean, and left everything else the same. With a little bit of hope, and trust (and maybe some prayer, and pixie dust for good measure) her body should get used to the new lower Prograf dose (since she had no DSAs) and even itself out. She’s got some blood draws coming up to check things, and a follow-up appointment with the heart transplant clinic at the U next month.

In the meantime, she’s still at school in Salt Lake learning all she can about being all grown-up and living on her own, taking care of her medical needs all by herself, building life-long friendships, and picking up an occasional tid-bit or two about interior design. Life is so good for her right now. A pretty good finale for this part of her journey, I’d say. :)

~Julia

P.S. It was really quite strange to leave her in the capable hands of her boyfriend and roommate for the last 16 hours of her 24-hour adult-supervised recovery and head back home without her. I guess in time, I’ll get used to that change, too.


National Donate Life Month

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NDLM_2015_FacebookAd_with WebsiteI had great plans to write this post at the beginning of the month, post stories of our new transplant friends to tug on your heart strings and convince you how important organ donation is, and motivate you to register to be an organ donor. The month whizzed past me though, and I fear I have now missed that opportunity. However, I’m guessing most of you who read this blog regularly have already been convinced. Watching Sarah’s journey and the miraculous change that has taken place through her second chance, should be enough proof to help you decide if you were sitting on the fence about registering to become an organ donor.

In observance of Donate Life month, we’ve been flying our Donate Life flag (whenever the weather has not threatened to tear it from its hooks), and been involved in planning the first Dash for Donation in Pocatello to be held the end of June. (More about that in a later post.) Steve called in to his friend Neal’s morning news talk radio show (on KID 590 AM) on Sarah’s heart birthday to talk about the importance of organ donation. (I wanted to post a link so you could hear it, but the sound isn’t working, so we’ll post that later, too.) There are currently more than 123,000 men, women and children waiting for life-saving organ transplants. 18 of those people die every day waiting. Here’s the crazy thing… 90% of Americans are aware of organ donation and support it, but only 30% have done anything about it. Why don’t they? I’m guessing they must have questions, don’t really understand, or simply haven’t cared enough to register.

Here’s a great video by HRSA posted on the Donate Life America website that explains organ donation and transplantation, and how it works. Click here to watch it.

Because someone said “yes” Sarah is living a life we never dreamed she’d have. Because someone said “yes” her little friend, Zack is pretty healthy (though his kidneys don’t particularly like the anti-rejection meds), growing like a weed, and doing all kinds of normal kid things. Because someone said “yes” our friend Abby gets to be a teenager and recently went to her first school dance. Because someone said “yes” Sarah’s blog buddy Lauren is serving an LDS mission in Salt Lake City and sharing the joy and peace that the gospel of Jesus Christ brings. Because someone said “yes” just a couple of months ago, our little friend Alex got another chance–just in time–and is home with his family and doing well now. Because someone said “yes” our cute friend Owen has had a great year and a half to be a “regular” kid. (He’s having some struggles right now, but he’s a fighter, and his angel heart seems to be healing and responding to treatment. Thank you for your prayers.) Because someone said “yes” our sweet friend Shiloh has been given an opportunity to grow up and run and play with her big sister. Her mommy said I could share a little news clip about their family and organ donation. Click here to see the cuteness. These sweet friends are just a few of the many kids we’ve been privileged to know personally and watch the miracle that came with life-saving organ donation. We love them all… and especially the people who gave them another chance.

~Julia

P.S. If you’re not already, the Donate Life America link above (or on the sidebar) will lead you to more information and connect you to your state’s registry. Thank you, from the bottom of our hearts.

 


Happy Heart Birthday!

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DSC_0024aSarah’s two year anniversary with her angel heart was last Tuesday. I can’t believe it’s been two years already, and I really can’t believe how well-adjusted and comfortable her new heart has become in the last two years. As we contemplated our many blessings, we overflowed again with gratitude for her donor, and the sweet family that was left behind. With such a beautiful healthy heart, her donor’s life must have ended abruptly, and and we are so very grateful his/her family said “yes” even with such a difficult loss. We had a quiet little celebration with our family that was home (we missed Rachel so much) with a small, yet sparkly, balloon launch. DSC_0030aWe gathered together in the back yard huddle-style while Steve offered a solemn prayer of gratitude for Sarah’s new life, and comfort for her donor family. As we each took turns sharing what we are grateful for through this experience, we let our balloons go and watched them float to heaven in honor of her heart angel. It was a sweet moment of peace and reflection. I set up a “pay it forward” event on Facebook to help us honor Sarah’s donor’s life, and was completely overwhelmed when in just two days more than 2.5K “friends” had been invited to participate and do a random act of kindness in Sarah’s name on her heart birthday. The tears flooded my eyes to see that almost 100 people had committed to “pay it forward” and many others probably did without even letting us know. Thank you to everyone who did something kind for someone else that day. The greatest gift that could ever be given to our daughter can never be repaid, but it helps knowing that anonymous service and love is being spread around the country (or world?) in a very special angel’s honor. SeanMcGrath2

Sarah’s been home for a week or so after finishing her first semester at LDSBC. She has had so many good experiences there and has made so many good friends. She loves her life in Salt Lake, and can’t wait to go back next weekend for her summer semester. College life looks good on her, and she is so happy. Wisdom teethWhile she was home, we took advantage of the break and tortured her a bit by having her deeply-impacted wisdom teeth removed. She didn’t want to be awake for it, so we opted for surgery at the hospital. Except for the three-try IV placement, all went well. (We sure missed the pro’s at Primary’s during that. Her wrist is almost as bruised as her poor chin is now!) Although she’s a little less “wise” now, she is recovering very well, and has checked off another “normal” young adult experience on her list.

Some of the things we’ve learned…. The world is full of good people with good hearts, who find joy in doing good things. Life is full of good (but sometimes hard) experiences that cause us to stretch, but always to grow. This journey we’ve been on has been full of God’s good blessings and never-ending love. ♥

~Julia


Movin’ on

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Sarah had another cardiology transplant clinic appointment near the end of February, where all went well and labs, echo and exam looked great. We took a tour of the Cardiology Transplant Department at the UofU in preparation for her transition there this summer. We met one of the transplant coordinators who seemed really nice. (We already met the other one when she was being evaluated originally there for transplant, and she’s excited to have Sarah back.) We learned that if everything looks good at her annual cath & biopsy next month, things change dramatically once she gets to the U. At the adult clinic, (as long as things are going well) they only see you once a year for a full-day of cath, biopsy, poking, prodding, and testing. Beyond hospital_monumentthat, there are only quarterly blood draws, and simple phone calls to transplant if she gets sick, sees a doctor for anything, has any other health related issues or questions. I’m sure I audibly gasped when I learned that at year 5, the now annual biopsies will stop completely…. Oh, gone are the days of monthly/quarterly clinic visits, check-ups, and periodic reassurances to mom and dad that all is well in Sarah’s angel heart. Pretty incredible and so very exciting, but kind of unnerving, too. Her annual cath/biopsy had to be postponed until May for her wisdom teeth surgery, so that will be on the 11th, and will be our very last appointment at Primary Children’s. Transition to the adult world was eminent, but I think with her choice to do her last annual at Primary’s instead of the U, we’ve managed to suck every last possible moment out of our care there! So…here’s to growin’ up and movin’ on! Wish us… oh, I mean…wish Sarah… luck! ;)

~Julia


CHD Awareness Week 2015

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Yesterday was the first day of Congenital Heart Defect Awareness Week. Sarah’s journey dealing with her CHDs and subsequent heart transplant has affected so many more lives than just her own. This week we remember sweet angels and fighting survivors whose incredible hearts have touched all of ours….

I was just looking and I can’t believe it’s been three and a half years since we started this blog to chronicle Sarah’s transplant journey. It’s been that long since I was thrown into this heart world, meeting other heart moms and dads in the Intermountain area, and started to realized that it’s not a journey we’ve been on by ourselves. Many have walked this path before us, and still more are following behind us. There are so many people affected by congenital heart defects in this world. I bet besides Sarah, you know at least one other person who has had heart surgery of one kind or another. If you don’t, I bet you know someone who does. I am also willing to bet that if they’re under 30, it was most likely a CHD that needed repair.

In an effort to support the little people who struggle to stay alive, and the families of those whose tiny hearts just couldn’t work any harder, I offer my love, prayers and a gentle push for CHD Awareness. Here are a few CHD Facts you might not know…. (courtesy of Intermountain Healing Hearts)

  • Nearly one of every 100 babies is born with a CHD. Congenital heart defects are the #1 birth defect in the world.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
  • Surgery does not cure CHD. Many children will require additional surgeries and lifelong maintenance to sustain their heart health.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • In the United States, twice as many children die from congenital heart defects each year than from ALL forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

As hard as some of these facts are to read, I know that most of us wouldn’t trade the paths we’ve traveled for anything. These special children come into our lives and are immediately a source of light, a reason for hope, and a strength to many. They make us who we are. Talk to someone you know who is affected by CHD, ask if you have questions, and pray for healing and hope for the families whose “babies” are struggling right now.

If you’d like to do more, Intermountain Healing Hearts is having a social media campaign this week called Heart on Your Sleeve we’d love for you to participate in. They also accept donations for research funding at this same link.

~Julia


The Drop-Off

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I really should have posted these pictures a couple of weeks ago, but I was waiting for them to get downloaded from Steve’s phone, and then I was waiting to hear from her and see how she was doing in her college adventure before I posted a report. She obviously beat me to it, and what a wonderful report it was! (Click here to read it.) Miss Sarah is LOVING her new Salt Lake City life!

My mom always says it’s easier to have people you love go away when you can “see them in a place”. When you picture where they live, what they’re doing, and what things look like, it’s easier to picture them doing regular things and being content and happy. Sarah so beautifully explained what she’s doing, so here is where she lives and what things look like…

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Sarah lives at The Plaza Hotel… really. It’s kind of like the Tipton, except without Zack or Cody, or…well, anything else their “suite life” has in it. It’s dorm-style housing just for the girls from LDSBC on three floors with a commons room on the main floor and shared kitchens on two floors. It’s located in the train’s “free zone”, a block and a half from the school, City Creek Mall, her pharmacy, and Temple Square. (The Gateway Mall is only a few blocks away, too.) When Sarah goes out her door, she can look out a huge window and see the temple. :)

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Here’s Sarah’s corner of the room. She also has her own desk and wardrobe. Her room has a sink outside the bathroom, a small fridge and microwave, and small balcony where they can step out and breathe in the not-so-fresh smoggy Salt Lake City air. But it’s pretty.

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Here’s a picture of the unpacking. Finding homes for all the necessities. You know, like popcorn, bagels and laundry soap. While we were helping her settle in, we got to meet her sweet roommate, Amanda. Hearing how quickly they became friends and how well they have gotten along has done my mother heart so much good. If you love the people you live with, and actually like to be with them, too, life can be pretty wonderful. I believe that their roommate match wasn’t just two people who needed a room and were randomly stuck in one together. I think they really needed each other. Heavenly Father knows our worries and fears. He listens to our prayers. And sometimes what he wants for us matches perfectly with what we want. It’s such a comfort to know that she’s happy and loving her new, grown-up, independent, testimony-building, college education-seeking life.

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LOVING THIS PLACE!

The good-byes were a little hard, but I knew they would be. From this moment on, it will never be the same. It will be amazing, scary,  awesome, frustrating, incredible, challenging, and wonderful. But it will be different. We look forward to having this girl back home for visits and seeing the incredible changes that are sure to happen in the coming months.

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This one had kind of hard time for a few days. Both of his big sisters left him in 4 months’ time, and he’s feeling a little freaked out being the oldest at home and living in the basement without them. So glad they got to strengthen those relationships before the girls grew up and left home.

I kept it together pretty well until we got in the car and drove away. I had so many worries (which were mostly gone after Sarah’s first text message to me), but the most overwhelming feeling that actually brought the sobs to my throat was the gratitude I felt for her donor family. We still haven’t heard anything from them, and I wished so badly I could tell them of the incredible opportunity they gave to Sarah. I wish I could explain to them how much it means to us to see her living a life we NEVER expected her to have. It’s still a miracle to me, and I will be forever grateful for that one unselfish decision that gave her this second chance.

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20150110_174253~Julia


Liver, Lunch and Love

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A couple of weeks ago, shortly before we dropped our girl off for her college adventures, I took Sarah down to Salt Lake for a liver clinic appointment. We left super early in the morning to be there in time for an 8:00 appointment at the U. We’ve decided we really like that clinic. Kerin, the nurse practitioner we see, is super nice and thorough. After casual conversation, she examined her and then talked to us about her last MRI in July. Comparing it to the one 8 months before that, Sarah’s liver is not only smaller, but the nodules seem to be smaller, and everything indicates that her liver is getting better. Because severe liver damage in congestive heart failure patients is so common, it has been re-categorized and is now referred to as “cardiac cirrhosis”. The blood wasn’t pumping back out of Sarah’s liver the way it was supposed to, so her heart was causing damage to her liver. When we “fixed” the source of the problem, her liver responded in kind and is now healthier than it’s been for several years (at least). It will take time with her healthy new heart for her liver to heal completely, but it’s well on its way! She may always have nodules and scarring, but the kind caused by heart failure are very rarely cancerous or turn into anything to be concerned about. Kerin suggested that because this trend of healing should just continue, she was going to talk to the team about long-term plans. She didn’t think there would be a need to repeat the MRI every six months anymore, and that maybe our visits could be annually, or even release Sarah from their care completely. The heart transplant team can keep an eye on her labs that show liver issues, and refer her back to clinic if there are indications of problems. Amazing.

We took a walk across the sky bridge to Primary’s to visit nurses and say hi to some of our favorite people there. We got to see a couple of our favorites that were working that day, and were amazed at the techs and nurses she didn’t have often that remembered her so well (by name) and were so happy to see her. Emily (one of our favorite nurses) said that she couldn’t believe how different Sarah looked and was so grateful to see the “after” of one of her sweet patients. She said it’s really a treat to see them when they’re healthy, and it doesn’t happen often enough. We went over to say hi to our friends, The Rainbow Kids Palliative Care Team, and wandered around until we found their new offices. We gave reports and got hugs and were invited to the lunch they host every Tuesday for parents of their patients. We left the hospital for a while to buy Sarah’s books and supplies, and get a couple things figured out for school at the LDSBC the next week. We headed back to the hospital for free lunch, and to see the rest of the Rainbow Kids. Usually when we visit, we only get to see a couple of them. We were go glad (in this transitional time for Sarah) to have been able to see all of them that day! I’m not sure how many times I heard them say things to her like: “Ya know, Sarah, we’re right up the hill/just a phone call away/your support away from home/here if you need anything….” I was so relieved especially to hear one of them say, “Sarah, you’ll always be one of our kids.” I hope she will use that resource to help her out if she’s ever lonely or struggling and doesn’t want Mom or Dad to know. It made me feel a little better about her being away from home.

During the lunch, we met a sweet mom from the Logan area whose newly adopted baby daughter was there recovering from her first surgery. She was born with a few of the same heart defects Sarah had. We had a great visit and loved hearing her tell of her sweet angel’s arrival and journey so far, and then shared Sarah’s story with her. She was so grateful to have met a fighter—a survivor—so early in their journey that could give her so much hope for her sweet baby. I love that Sarah can be that for people. It makes my heart smile.

Because we were talking with our new heart friend, we didn’t get a chance to say goodbye to all the Rainbow Kids, so Sarah and I wandered the hallway back to say goodbye. On our way there, we ran into Sarah’s transplant cardiologist, Dr. Everitt, who we love so very much. 0106151340It was something we were hoping so badly would happen because it was her very last week at Primary’s. She has taken a position as the head of Cardiology Transplant department at Denver Children’s Hospital. She is so amazing and we know that she played a very big role in saving Sarah’s life. Because of her expertise, her ingenuity, her compassion, and her stubbornness, she was able to make things happen…just for Sarah. Besides us, there are a whole bunch of parents who entered the transplant world whose “babies” were in her care that are so sad to lose her. There will definitely be a part of each of us that goes with her to Colorado. I think it may have been a little easier on us though, because with Sarah’s imminent transition to the U for adult care, we were going to have to say goodbye soon anyway. We’re just so grateful that things worked out perfectly that we had an unlikely meeting in the hallway and she took a minute so we could all say goodbye!! Always amazed at those non-coincidental tender mercies…. We are happy for her to have this opportunity, and the kids in the Denver area are so lucky to have her.

We had a wonderful day together and enjoyed our visits with people who cared so much for her (and us) during such a trying time in our lives. There were so many hugs and smiles, it was such a boost to my soul to see how Sarah’s journey has affected so many other lives. We loved sharing perspective and faith with a new friend just beginning this journey. We loved our walk around the business college campus, and I loved watching how excited Sarah was about this new adventure in her life. We loved rocking out to Sarah’s favorite ipod playlist in her dad’s new car, and talking and laughing in our 5 hours of travel that day. I will miss those long-ish day-trips together, but am so grateful for those hours of mostly undivided attention and time these past few years. What a blessing. Love, love, love that girl.

~Julia