Warning: This post will likely not be terribly interesting to the average person. May I interest you in a yummy recipe instead? However, if you’ve recently found out your child will need a heart transplant, I hope this post can shed some light on what to expect during the transplant consultation.
Heart Transplant Consultation
Wilder’s transplant consultation appointment was six weeks after the official RCM diagnosis. Thankfully we did not need an emergent appointment, but I am sure they move more quickly if necessary.
Wilder and I flew from OKC to Houston for the appointment, accompanied by my mom. For Wilder’s sake, we decided to make this trip as much fun as possible. He went on his first plane ride since he was a baby and loved it. For a boy who hopes to be a pilot when he grows up (along with a garbage man, of course), it was thrilling!
We also stayed at the Embassy Suites near the Galleria. I mean, they’ve got swans living inside the hotel and a pool. What more could you want?!
Our transplant coordinator explained that the first appointment would be extensive and to prepare for a long day. She wasn’t kidding! We started our tests at 12:30 and it was nearly 6:00 when we finished.
Stop one was to draw labs. At this appointment they drew nine vials of blood to get baselines on just about everything, as well as start the tissue typing process. I found out later this is only about a third of what will need to be drawn, so there will be large draws at the next several appointments.
The draws themselves went beautifully. They used a vein finder to show Wilder his veins and patiently waited until he was ready. I did hurry the process along some since I knew his stubborn self could wait hours before saying he was ready.
Texas Children’s Tip: The lab in Wallace Tower is right beside the cafeteria. We were there right at lunchtime and it was very hectic. If you’re feeling overwhelmed, the skybridge down the hall is much quieter.
After labs we moved on to the clinic for testing. Along with normal vitals, Wilder also had an echo, EKG, and chest x-ray.
If you’re at a transplant consult, you’ve experienced an echo before, but this one was much longer and more detailed than previous ones. It lasted a full hour, if not more with over a hundred pictures taken.
When we received the call to schedule this appointment, we were warned to expect this portion of the appointment to last a couple of hours. They also scheduled the initial appointment as the last one of the day to allow time for asking questions without feeling rushed.
At this point, we officially met our Transplant Coordinator. For those not familiar with the transplant process, your Transplant Coordinator will become one of your best friends. They are your first point of contact for any questions, are master managers able to get your appointments lined up, and can get you in contact with different teams you may need (social work, financial assistance, child life specialists, etc.).
The last portion of our appointment was meeting with the doctor who will manage our transplant journey. First, she asked all about Wilder and our family health history. Again, this was much more detailed than the normal health history questions you expect.
Next, she gave us an overview of the transplant process. We covered what would happen during the evaluation process, how they would manage him while we are waiting, what we need to expect once wait-listed, a bit about the actual surgery itself, and extensively about the after care. Lastly, we had time to ask any questions we had.
Honestly, this portion of the day is just a blur in my memory. However they gave us a huge manual to help prepare us for transplant and answer questions that may come up along the way.
The most important takeaway from the day was that I felt confident in the entire team. From the schedulers, to the lab team, to our coordinator, to our doctor, I felt a sense of peace about our decision to receive treatment there.
Going in to this appointment, I had two big fears: that we would hate the center or that the doctor would try to make transplant out to be rainbows and sunshine. (I’ll tell the story of my dad’s transplant another time. It was not rainbows and sunshine.)
Instead, the doctor said two things that gave me confidence in our decision to choose Texas Children’s:
Transplant is not a cure. It is simply trading one condition for another.
The best transplant is the one we never have to do.
Tips for Transplant Consultation
If you will soon be attending a heart transplant consultation for your child, here are a few tips:
- Bring a bag with snacks, activities, and an iPad/device. It’s a long day!
- Be upfront with the doctor if there are certain things you don’t want to talk about in front of the child. They were delicate in conversation and we had already spoken with Wilder about what is going on, but depending on your child this may be something to consider.
- Write questions down beforehand. You will be exhausted physically and mentally and forget. But also, know your transplant coordinator is there if you think of questions later.
- Write down questions during. My mom and I both had paper on our laps to jot things down without having to derail the conversation multiple times.
- Have relaxation planned. I know you’re stressed, but this is a long haul. Schedule a massage for the next day, do some yoga, meet friends for a drink. Don’t forget to take care of yourself in this journey!
Lastly, reach out to me if you are on this journey. I would love to be part of your support team!