The First Step

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 Sarah006congenital 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

1 thought on “The First Step

  1. Wow! I love this blog idea! What a strength you all are to the world! I am so proud to have you as my family! Just love you so so much. We get to be together forever! Thanks Sarah for fighting this fight with such dignity and grace.

Leave a Reply

Your email address will not be published. Required fields are marked *