Hi. It’s Angelia. You will hear from me frequently as I am more or less the medical director for the family. 🙂 I’ve been contemplating many things I want to share with you and decided to give you an update combined with a window into our medical juggling act.

December 2023

Let’s go back to December 2023 when we received the recommendation for Eli to be evaluated for heart transplant. We were not expecting heart transplant conversations to happen until Kya and Eli were closer to 30 years old, but following a series of heart tests for Eli, this was the topic at hand. We waited for the Pediatric Transplant Team to schedule testing and let us know our next steps.

Our next steps included four days of appointments. For the curious, here’s a quick list of the scheduled consults:

• Transplant Orientation
• Ultrasound
• CT of Chest
• Academic/School consult
• Nutrition
• Palliative Care
• Pastoral Care
• Pharmacy Consult
• Surgical Consult
• Social Work Consult
• Physical Therapy/Occupational Therapy
• Insurance/Financial
• Neuropsychology Consult

I also should mention that Eli had cleft related oral surgery over Christmas in December 2022. During that time the transplant coordinator visited us in the hospital and the lab collected somewhere around 15 vials of blood for the evaluation.

Let me pause here to reflect on the enormity of it all. I had toured a transplant center in the past, had absorbed a lot of general transplant knowledge, knowing that transplant was a likely path in the future. I felt equipped to proceed from a knowledge/cognitive perspective. However, during this process, I was also navigating my emotions, supporting my teenage son, while trying to advocate for his care in ALL of the area’s listed above. All I know is that we put our heads down and took it one appointment at a time. At the end I had several notebooks and lots of my own notes, as well as more questions than answers. Eli (as always) put on a brave face for the tests, and allowed his take charge-social work-fierce warrior mom to work her magic. I’m so glad he trusts me to do this, but it’s also terrifying.

Ultimately, Eli was approved for the pediatric transplant list. I’ll talk more about transplant criteria in the future, but the bulleted list gives you some idea of the assessments involved. For now, understand that while the process is informative, it’s primarily an evaluation to determine if the patient meets criteria for the heart transplant list. For a variety of reasons, not everyone is approved to be listed.

November 2024

Now let me bring you up to this week. Eli is 18 and it is time to move him from the peds side to the adult list and guess what – it’s a whole process. Like before, there are many required tests and essentially he is ‘evaluated’ once again, this time for the adult side. As Eli is in college, we are working hard to minimize impacts to his academic work, therefore, we decided (once again) to sabotage his holiday break with medical appointments. He’s only an hour away for school, but logistics pose an additional challenge. The really fun part is that aside from requesting a general time frame of several days, we don’t really get a say in the appointment dates/times. In fact, we are still waiting for all the appointments to be finalized. We simply wait for the schedule and do our best to move things around – juggling!

As of now, these appointments include ultrasound, dexa scan, heart cath, echocardiogram, infectious disease consult, surgical consult, orientation, dietician consult, and pharmacy. More will be added and the appointments extend into December.

Pause…the last thing we want anyone to feel is pity for our family. We share because we want you to feel part of our journey and walk through the experience with us, however near or far you are. We also want to emphasize that we are incredibly fortunate to have access to resources – TIME, although relative to heart failure, is one of them at this moment (more on that in future posts). With this in mind, let’s continue…

So here we are in November, holiday season upon us, juggling several appointments. At this point, you might be wondering where Kya is in this mix. Thankfully, although she is in heart failure and experiences symptoms, she is stable at home. She also has a full day of routine appointments coming up next week with her heart failure team.

There are a million additional items on our list, including academic accommodations, physical therapy, medications, craniofacial appointments…Oh, and holding down our own jobs (Eric and Angelia) and going to school (Kya and Eli). Also, can someone please clean my house and get the groceries? 😉

The main message today is to share with you that amid the emotional, psychological, physical and financial tidal waves of this experience, we want to live every moment to the fullest. Some moments take our breath away, fill us with fear and grief, while others bring light, create beautiful memories, and remind us to hold on and cherish all the love and laughter. After all, juggling can be fun when you have all the balls in the air. It’s also easier and a lot more fun with more people. Thank you for being our people.