Last Thursday, we planned to go to Salt Lake to the Huntsman’s Hospital for Sarah’s liver MRI. On Wednesday, I got a call from radiology asking about the shunts, coils and wires that were used in her chest throughout the years. They wanted to make sure she would be safe during the scan. Apparently, we are supposed to have some sort of card that lists the type, make, and model of anything they put in her permanently. We were never given anything like that, and they were having a hard time getting hold of all the operative reports and records where that information would be given. By Thursday when we were supposed to leave, they now had the reports, but they did not include the make or model of the coils they used, and felt uncomfortable doing the MRI without sure knowledge of what they were up against. We told them to keep looking, and we headed out anyway. We had another good reason to go to Salt Lake…

On Wednesday, we found out that a family in our ward (whose first-grade son is best friends with ours) had two daughters going to Primary Children’s because they were sick with something that started with E. coli. Their 9 year old was on the way to the hospital by ambulance, and the father was driving the other kids to their grandma’s and the baby to the hospital (she was just starting with the same thing). My heart just broke for this sweet family, who went from having six healthy kids to having 2 daughters in the hospital with unknown outcomes, in a matter of two days. I know we’ve faced that with Sarah before — many times, actually — but she’s always been “sick” and somehow those surprises are somewhat expected. It hit us pretty hard. We’ve faced these things (and walked the halls of that hospital) for years, and knowing someone else we know would be there worrying, suffering, and trying to figure out all we have learned over the years made us kind of teary. We put together some little practical gifts and set off to the hospital, knowing we were going to support friends and lift spirits, even if we didn’t have an MRI to go to.

Just 30 minutes before we were supposed to be there, Huntsman’s called us back, and told us they were unable to get the information they needed to satisfy their concerns in time, and we would have to cancel the MRI and reschedule in the next couple of weeks. Sarah was relieved, and although we were a little annoyed, our trip to Salt Lake simply took on a different purpose.

We spent a couple of hours at the hospital with this dear family, and it was such a joy to be able to give them a little support and love. Sarah sat and talked to the oldest daughter (she has babysat her in the past) and shared some of her tips, tricks and memories with her of hospital life as they opened her “activity bag” we brought, and shared with her the the notes sent by her 3rd grade class and friends from church. Although they are in rooms just near each other, we realized that these parents haven’t had a chance to be alone together, or get any good sleep since they have been there. They both get to stay with the girls and switch back and forth, but they haven’t had any reprieve or rejuvenation time, with one being in each room. We probably didn’t do much for them besides offer our love and support and a little friendly advice (from the millions of thing we have learned), but it was a very different experience for us being on the helpless outside, rather than the family on the inside. On the way home, Sarah asked, “Is this what people feel like when I am in the hospital? Like they want to help somehow to make it easier, but don’t really know what to do?” Teary-eyed, we all realized that’s exactly how they feel. It was kind of an eye-opener for us, and we were grateful to have the opportunity to be the ones supporting, loving, and praying for someone else. We were also very humbled to know the depth of love and support everyone else must feel for us when it’s our turn.

I was on the phone yesterday with some nurses, techs and coordinators trying to get everything squared away for our trip tomorrow for Sarah’s MRI. She’s having it done at Huntsman’s Hospital because that’s the one that had the 1.5 tesla machine which she needs because of the metal coils and clamps in her chest. Anyway, I called Emily, one of our two nurses at Primary Children’s that works with the heart transplant team there (the really helpful ones) to ask about how to go about getting operative reports about placement of her shunts, coils and clamps. She told me she’d just take care of it, but that’s not what this post is about….

When I told her about the MRI, she told me their scheduler would be calling me soon to schedule the heart catheterization. Then as we were talking, I mentioned that the University liver doctors said she probably wasn’t sick enough for the liver transplant. She was surprised (they haven’t received reports yet), and said, “Oh, that’s good. Maybe she will do better with just the heart then.” …HUH??? I told her I was under the impression that if we didn’t do the liver, we wouldn’t do the heart yet, either. She said, “Well, this will certainly be interesting”. …Yep…. To say the least…. Not sure what to think now….

When I told Sarah, she said, “HUH?” I told her, “Yeah, I’m really confused now.” And she said, “I think I’ll stop trying to figure it out. We’ll just do what they tell us.”

Smart girl.

Hope she does, and wish I could….

~Julia

On Tuesday and Wednesday of last week, Steve and I took Sarah to meet with heart and liver transplant teams at the University of Utah Medical Center. We were beginning the process of evaluation, the first step of transplantation. We started at Primary Children’s with the heart transplant team there. They are kind of our “bridge” from the children’s hospital that is familiar to us, to the huge one right next door for grown-ups. They meet weekly with the transplant team at University because many of their young patients have come from Primary with congenital heart defects. Kids like this didn’t used to grow up. They used to have a relatively good life for only as long as their altered circulatory systems would allow. With the advancements made in medicine over the last 20 years, these heart kids are living longer, and the previously unknown long-term complications are presenting themselves. In the afternoon, we met with the University heart transplant team met with us. They came into the exam room, one by one, and talked with us. We met with her new heart transplant coordinator,  pharmacist, nurse practitioner, cardiologist and surgeon. They did short exams and talked to us about her history, and answered questions. They also decided her oxygen saturation levels were too low (low 80’s, same for years), and ordered an oximeter to check it at home, and oxygen more often and at higher flow.. They said it would help keep her lungs healthier.

We especially liked the surgeon, Dr. Selzman. He told Sarah she wasn’t supposed to be here. After she joked about having an appointment, we talked about how kids like her didn’t used to live so long. They have 8 patients right now between the ages of 18 and 23 that are being listed for a heart and liver transplant. He shared with us that although they’ve done many successful heart transplants and liver transplants at that hospital, they’ve never done heart and liver both. In fact, there have only been a few in the entire country. This is all just so new…. We learned that they would have to do both, one right after the other, because the heart won’t do well with a damaged liver, and the liver won’t do well without a strong, “normal” heart.  Also, having both organs from the same donor will also be more ideal. Other than that, we didn’t discuss the actual transplant much, or post-transplant care yet. We didn’t even talk about the scale and how people are listed for hearts. We focused mostly on answering our questions, her evaluation, and the things that will be required to determine if she is eligible and a good candidate for a new heart. She will need a heart catheterization, among other tests and we still need to meet a few more people on the heart team. We were told that they should be able to do all of her testing and finish her evaluation within 4 to 6 weeks. Whew… this was much quicker than we expected.

With that information to digest, we checked into our hotel and relaxed for a bit. We took Sarah to Tepanyaki’s Japanese Grill for dinner, and had a really nice time together. After another hour or so of “Storage Wars”, we drifted off to a pretty good sleep before we had to rise early to make it to our appointments early the next morning.

The next day, we went back to the University of Utah Medical Center, but this time to the liver transplant section. We were taken to a conference room, where we camped out the rest of the morning. It was interesting how they had scheduled the team members to come to us, one after another and give their presentation, and gather their information. We met with the liver transplant coordinator, social worker, financial specialist, and dietician. They picked our brains and probed our emotional state, and left us with a lot of information. We talked about pre- and post-transplant expectations, procedures and issues. They showed us a printout of costs of medication and surgery (our incredible insurance and medicaid should cover all of the surgery, but we’re not sure about anti-rejection meds yet – though medicaid covers our copay on what she takes now). And they taught Sarah about low-sodium diet, complex carbs, high protein-low fat foods, and no-no foods (no more pomegranates, grapefruit or herbal supplements after transplant!). It was so much information, our heads were spinning.

Following a lunch break in the cafeteria, we met with her pharmacist, the nurse, a volunteer that’s had a liver transplant, and the transplant surgeon and hepatologist (liver doctor). Meeting the volunteer was really good for Sarah. He just stepped in for a few minutes a couple of times, but it was nice for her to see someone healthy and happy who has been through this. When he walked in and we introduced ourselves, he asked, “which one of you is sick?” and then told her that she looked too cute to need a liver transplant. It made her smile. While the nurse was gathering more history, the surgeon came in and asked some questions and did a mini-exam. Much to our shock, he ascertained that she probably isn’t sick enough to even qualify for a liver transplant yet. She isn’t showing any of the symptoms of liver disease. The liver patients are listed based on a MELD score (Model for End-Stage Liver Disease) and is calculated on three things: bilirubin count, INR (clotting factor), and creatinine (reveals kidney function). You’re given a number from 6 (beginning liver failure) to 40 (worst you can get). Usually, patients get to the uppper 20’s to low 30’s before they get a new liver. Both the surgeon and the hepatologist seemed to think (just by looking at her) that she may not even be at a 6 yet. They are doing an MRI next Thursday to determine if the nodules are just regenerative tissue caused by the cirrhosis, or if they are cancerous. They’ll know by watching how the contrast flushes out or not, how fast they’ve grown, and through certain proteins in her blood work. I know that if they are cancerous, they will transplant at a certain point, but I’m not sure what that does to her MELD score, or how big they let the nodules grow before they will remove the liver. We’ll just have to see. If things look OK, the liver doctors at University will just follow her through blood work quarterly and MRIs every 6 months to keep an eye on things, and begin this process when she will qualify.

It was kind of tough to go from thinking we’d be years out on testing and waiting, to thinking this could all be over in a year or two, to thinking we’d be waiting a few years before we even got on the list. It was kind of a let-down. I am grateful that she isn’t that sick yet, but I also don’t want her to have to get that sick…ever. We’ve been so focused on the end result — her new life — that we hadn’t thought much about all she’d have to go through before we got there. In Sarah’s mind, getting a new heart and liver were kind of the beginning of the rest of her life. And now, she’s stuck in “no-man’s land” as her doctor called it, being sick, but waiting to get sick enough to do anything about it. It kind of stinks, and we were pretty unsettled for a while.

On the way home, however, we started digested all this information, and I realized how absolutely grateful I was. I am grateful that she IS healthy enough to not need a transplant yet… How incredible that is in her situation! The doctors can spend the next few years working out the kinks with the other 8 patients first….That will definitely be to her benefit. We’ll have more time to make more memories before things get harder….We’ll still get to take our family trip to Disneyland, and she can take her trip to Alaska. And lastly, if we don’t have to go through this for a few years, our family situation will be much different then….We’ll be in a better financial situation, with a car that gets better gas mileage for all those trips. Our kids will be older, more independent, and able to handle things better. Actually, when I really think about it, we have been given a “sneak peek” at what is to come and an opportunity to better prepare.

Another wonderful blessing is that she’s getting a heck of a lot of attention now. She now has 8 different teams of doctors, nurses and specialists following her and covering her care, besides her primary care physician…

• Pediatric/Adult Cardiology (Dr. Yetman)
• Pediatric Gastroenterology/Liver (Dr. Jensen)
• Pediatric Heart Transplant Doctor
• Pediatric Heart Transplant Team (including wonderful nurses that know her personally, make her feel like she’s their only patient, and bend over backwards to help us)
• Adult Cardiology Transplant Doctor
• Adult Cardiology Transplant Surgeon
• Adult Liver Transplant Doctor/Hepatologist
• Adult Liver Transplant Surgeon

So, there’s where we’re at. It’s our understanding that Dr. Jensen thought the liver was damaged enough to warrant a transplant, and Dr. Yetman agreed that it would be time to do a heart transplant, based on her need for a new one with the new liver. So, we’ve concluded that we’re not doing either for a while. We still have labs to do, the MRI and heart catheterization before we’ll know for sure where she stands with all of this, but for right now we’re trying to be OK with just practicing patience and focusing on the blessings and things we can be grateful for.

~Julia

We love how much people love Sarah! She has made such a positive impact in so many people’s lives. We so appreciate the many people who include her in their daily prayers. The faith, prayers, and kind deeds of those good people has given us strength and sustained us in hard times, and helped us see miracles in her life. Sometimes, when they ask about her, we find ourselves only giving them the nutshell version of what’s happened, and leave out important details and things they really should know. We have decided that through this blog we can give a better report if we do it while the feelings and information are new, fresh and unedited. We also hope that through our experiences and perspectives, someone who reads her blog might find more faith, hope and joy in their own struggles.

This journey we are beginning — her second chance at life, with a new heart and liver — will be a long one. One filled to the brim with tears, frustrations, worries, hopes, miracles and blessings. It will also be filled with the love and support of our many circles of influence, those who love us and our Sarah so much. Besides those people who love and support us, we are also very grateful for the Lord’s hand in our lives, for His guidance and inspiration, and His everlasting love and grace.

~Julia