Back Home Again

Thursday we got to go back “home” again! Because the University of Utah’s surgeons were uncomfortable doing the transplant on her complicated and unique anatomy, we went to Primary Children’s Medical Center for their transplant evaluation/orientation appointments. We have already done all the required testing for the University, so it was mostly just a Primary-Childrens1lot of information. She had an x-ray and lab tests to update some of the eval tests, but pain-wise, it was a very easy day. Emotionally and stress-wise, not so much. We met with lots of people we’ve already seen and love, and met a few more that we’ll see again and most likely grow to love. Switching back to PCMC for this adventure also greatly reduced the number of teams following her and communication and records will be much easier to handle. Dr. Everitt is the transplant cardiologist and works very closely with Dr. Yetman in the same cardiology department. In addition, Dr. Jensen, the liver doctor at PCMC who first referred her to the University will also be following up with her liver health through this experience. (Yay!) We don’t have anything against the Univeristy…they took great care of us. It’s just a sterile adult hospital, and apparently we’re just not ready to grow up yet! …It just felt so good to be back “home”!

These are the doctors/specialists/people we met with:

  • Michelle – She’s Dr. Everitt’s nurse practitioner. She works with the coordinators and takes really good care of Sarah. She gave her her pager (this caused a little panic for Mom and Dad), updated phone numbers, and gave us some reading material to discuss later.
  • Dr. Kaza – He’s the surgeon who will most likely do her transplant. We LOVED him! He is so gentle, kind, soft-spoken, compassionate, and talks openly about God. That was comforting to us, knowing that the man literally holding her life in his hands knows and works with God’s guidance. He leaned forward, looked into our eyes, and gently told us all the awful things that could happen. He believes straightforwardness is the best way to present such information, but did it with such kindness that we felt safe. He said the surgery will likely take 10 to 12 hours as he’s very meticulous and careful. He will be doing the prep work and reconstruction of her pulmonary artery while he waits for the heart to arrive (but only after visual confirmation from his team that the heart is good and a perfect match), so the donor heart has the least amount of time on ice. He said to expect her to be in ICU for a couple of weeks, and then in the surgical unit on the floor for another couple of weeks.
  • Dr. Yetman – Sarah’s cardiologist (you know how much we love her) took a few minutes in for a clinic visit to check her out. She did her routine vitals and exam. The swelling is coming back in Sarah’s feet and lower legs, but she’s “not feeling too bad”. Her albumen level is at 1.9… not so good, but holding ok for now. Dr. Yetman usually follows Sarah’s discomfort levels as a measure of when to do tune-ups.
  • Dr. Everitt – She’s the transplant cardiologist we’ve met with since October 2011, when transplant discussions started. She’s amazing, too. She did a quick exam and then we talked more about requirements, the risks, the listing, the donor heart, and the transplant “things we have to know”. We’ve heard most of it before, but there was one thing that was very new…. Unless Sarah gets too sick and has to be hospitalized to wait, she can be at home until the donor heart is available. Their new guidelines allow 4 hours, but they would much prefer that we hurry our fastest when we get the call and get her there in less than 3 hours’ time. We were happy about that. We discussed again that Sarah’s field of donor options is much wider than many of their transplant candidates. She doesn’t have any funky antibodies that have to be matched. She can receive a heart with either A or O blood type. Because of her size, she can receive a wider age range of hearts – teen to small adult. She will be listed as a Status 2, so we still have to be patient and just wait til it’s her turn and the right heart comes along. (SeeĀ Heart Evaluation Continued for a better explanation of match and listing status).
  • Michelle – came back in and gave us the whole “nitty-gritty, down-and-dirty” information on the transplant, risks, overview of meds and finances, and had Sarah sign the consent.
  • Kristin – Dietician. Sarah presented her with a beautiful 3-day food record she made, complete with stats for calories, fat, sodium and protein (the four main concerns in her diet). Needless to say, she was very impressed, and told Sarah to “teach her”. It was cute. After Sarah regurgitated everything she had learned in prior eval sessions, Kristin spent a little time explaining a few more things and taught her about “power packing”. It’s all about getting the most punch for your bite. Everything she eats needs to have the most nutritional value, but also the most calories possible. When looking at calcium and vitamin D, ice cream wins out every time over a glass of skim milk. So, she told her to eat more ice cream. (No complaints, there!) In the healing process, it’s important for her body to have a storage to draw from. After she’s all healed and getting stronger, however, we’ll have to reverse that train of thought. Some of the medications she’ll be on cause weight gain, and being on them all her life, she’ll have to be careful.
  • Lindsay – Heart Transplant Financial Coordinator. We were so relieved and grateful to learn that our insurance and her medicaid combined will cover 100% of the hospital-related costs of her roughly $700,000 transplant. They also cover her post-transplant medications at about $8,000/month, except $50/month of over-the counter meds. (Being on SSI allows her to have medicaid benefits, which covers all of our co-pays.) Our only out-of-pocket expenses will be travel, food, and maybe some lodging through this ordeal. That could get expensive enough. I can’t even imagine how horrifying this would be if we had to figure out how to pay for it, too. She gave us information on a few fund-raising organizations that can help raise and manage money for her medical-related expenses during and after transplant. We’ll be looking into that.
  • Sabrina – Heart Transplant Pharmacist. She will manage Sarah’s plethora of meds post-transplant. This was kind of a hard meeting, hearing about all the anti-rejection drugs that interact with so many other things, and antibiotics and other drugs that have to be taken to offset the awful effects of the other ones. All the side-effects and necessary precautions were worrisome and depressing. She may not have many of those reactions, but it still wasn’t easy to hear. Guess they’re just a necessary evil in order to have a miracle.
  • Juliana – Heart Transplant Social Worker. She spent a lot of time with us. She did a psych evaluation, but also talked about our support systems, how Sarah was feeling about all this, coping mechanisms, mental issues, and helped us lay out a plan to help us all through the stress of this life-saving and life-changing event. She was really nice, too. She validated all of Sarah’s worries and concerns, and then encouraged Sarah to meet regularly (at least weekly for a while) with her counselor in Pocatello.

We left to go home at 5:00 in a snowstorm. Not the best idea in Salt Lake City. It took us over an hour to just get down off the hill! We got home safely in about 5 hours. All in all, it was a good day. An insurance authorization request was sent in Friday, and now we just have to get the call (within a couple of weeks) that she’s on the list, turn on the beeper, and begin our wait. We learned that transplant is not really a cure, it just buys more precious time. She is trading one disease for another, but it gives her an opportunity to really LIVE during that time. So, we are finally there…. Sarah gets to stay home as long as possible before the surgery. She gets to have lots more time on earth, and a chance at a feel-good life that she hasn’t ever known. How grateful we are that this impossible opportunity has opened its doors and we’ve had the courage and faith to walk through!

~Julia

2 thoughts on “Back Home Again

  1. Julia,

    I’m so impressed with how well you write these stories. Attorney Mary Huneycutt has helped me establish with a business that can help me set up http://www.idahohats.com with Paypal correctly.

    Clint and his wife are LDS, and they have adopted children as well as help find homes for other children that needed loving families. Once they learned about Sarah they said they really wanted to help support her too.

    I wish I knew how to handle all of this more professional but I’m trying to do the best that I can. Even if I can’t get this established even before her surgery, it may be able to help her down the road if needed.

    One of Chris’s friends called yesterday and asked us to donate money for one of their friends who has brain injury and is having a hard time finding a job. My brain injury was extremely severe so there’s always good and bad to that. I cried when I was told I could not work and was on disability. I could barely walk and talk, and it crushed me when I was being told I wasn’t going to totally heal. I loved my job because I loved my boss and Julie Baker who I worked directly with.

    Obviously I have learned how fortunate it is that I am alive, have really good insurance and am on disability. My feelings about Sarah are helping me to have energy to establish this website. I sure wish it was already organized, but when it is, we will see what is best to do.

    I’m meeting a woman dealing with cancer on Tuesday. Folks seeing the purses she’s sewing are really wanting to purchase them. I’m hoping the website will be able to help folks like her with making items to sell as well as some folks that need money donated to them.

    Sarah may enjoy making handmade items to sell. The website selling handmade items can link to stories so folks can learn about some of us that are making handmade items to stay positive in life too.

    Learning about the woman who has brain injury, doesn’t have family to help support her economically, and doesn’t have insurance, is who the website can hopefully help too. One of Chris’s friends started people helping her when they found she didn’t have heat in the house. I have learned about the programs to go get support for food, heat and etc.

    I’m shocked how few people even know what is available to help support folks in those situations. I want to help people learn what is best to do and what is available. I have learned tons the hard way trying to help some people.

    Due to what I have gone through, I know insurance can really help save a life, but I also know it can cost a lot to even get to where you have to be to see the doctors, nurses and etc. I’m trying to help get a doctor or two trained in this area to help people with interstitial cystitis and gastroparesis. If my family wasn’t near Cleveland Clinic, I have no idea how I would be alive now. We have spent a lot of money just flying to and from the doctors but at least we have always had a place to stay for free just an hour away from Cleveland Clinic.

    I will let you know more next week. I know you would really like Catherine Sandy that I’m so fortunate to have here in Pocatello. Catherine used to own a yarn store in Ohio, and due to her husband’s job, she ended up here. Catherine is extremely professional and a wonderful person.

    Thank goodness it’s going so well for your family. Take good care, Tam

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