Gabrielle answers your questions about living with HLHS

Question 1: My HLHS daughter is 14. I’ve been reading a lot about transition of care and making sure she’s ready to care for herself in a few years. What are some things your parents did well and some things you wish you would have known or been handled differently?

Answer: One of the things that my parents did to help me transition to being in charge of my own medical care was teaching me how to properly administer my medicine. As I moved through high school, I started to take charge of managing my own medicine and ordering them from the pharmacy. My parents would check occasionally on my meds but it was my responsibility to take them every day and order them when I was out.

Overall, I think my parents did a good job not treating me very differently…...One of the things that I wish was handled differently was having more confidence to try things. Don’t get me wrong, I had a fair amount of choice growing up. I felt like I couldn’t do some of the things that other kids could and it wasn’t because my parents said no. I just wish that I knew that I could try everything, and they wouldn’t get mad at me for quitting if something became too much for me. Looking back, I also wish I had expressed to my parents more that I should be the one to judge whether or not it was a good thing or not since I knew how my own body worked when they did say no.

Question 2: I was curious after I read her post on her marching band experiences, how she ended up adapting and modifying on hot days and other days that were challenging? I would also be really curious to hear her perspectives as an adult CHD Survivor on why so many CHD survivors fall out of care as adults. I've heard others say it's due to either being told they were fixed as kids were because they might have anxiety, but another adult with hlhs recently told me that it was just so challenging to come in for Cardiology appointments while trying to hold down a full-time job and raise a young child at the same time, and this person was also talking about the difficulties of medication management when you are trying to do those things as well, especially when you have to come in for INR checks.

Answer: I ended up adapting to the heat by modifying what I wore underneath the uniform. I started to wear very light clothing and made sure that I was always by one of the volunteers who carried water bottles. That was mainly for the summer, and since we were a marching band, we were done being outside after football season. I used what I had learned from those experiences and now I always make sure to wear light clothing when I know I will be in the heat and not...

For the care as an adult, I think this relates to my answer above. I think it was very beneficial for my parents to make sure I was the one setting up doctor appointments and ordering my own medication. I’m sure that it would have been very easy for them to just do it and they wouldn’t have minded but putting those responsibilities in my hands has helped prepare me for the future. For example, since I am still in school, I will schedule and attend  my appointments through the summer and ask for time off from work that week. That week also falls around the time that my family and I go on vacation, so I would have to ask for off anyways. I understand that it is hard to make and keep those appointments, but I always have to remember that this is my health. Your health should come first, and your medicine shouldn’t be a burden. You just need to learn how to work it into a routine that you do every day, and it ends up not being a big deal.

Check back in next week to read more about Gabrielle Wanek, a twenty-three-year-old living with hypoplastic left heart syndrome. 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.