Transitioning (Part 1)
When you are growing up with an illness there are many parts of a “normal childhood” you have to grieve. When it comes to grieving these losses, my amazing team of pediatric doctors and nurses were always there for me. They continuously had the right words to make us feel better. They became a part of our family in their own special way.
Grieving the loss of them
When I would go to the doctors, all the bases were covered to create a sense of security that I needed. Not only did they just look out for my physical health but my mental health was just as important. Helping me navigate my life from age 6 to age 23, they were there for all my milestones giving me the support I needed. They took the time to establish a true personal connection. But nothing could prepare me for grieving the loss of them.
A blessing to graduate
As we prepared together for this major life transition, the time came to part ways. I went to the first doctor’s appointment in the adult world. It went smoothly, I believed that over time I could feel safe with these doctors and nurses. I had the privilege to “graduate” the pediatric transplant program unlike other children in my situation who were not blessed to make it.
After that first meeting with my new doctor and nurses, I was looking forward to building my adult relationship with them. But over the next few appointments that feeling quickly faded. The appointments seemed rushed, and I found it harder to get the secure answers I needed to my questions.
Something to get used to
This brings me to the present day. It has been about a year and a half and something just does not feel right. I know these doctors are busy and I knew things would change but I didn’t expect to feel this uncomfortable with my new doctor. I feel so torn inside because when doing research and reading reviews it all shows that I am with the best program in my area, which then makes me start to feel like it is just me. That this is the discrepancy between the adult medical world and the pediatric medical world, and this is something I am just going to have to get used to.
A major question to answer
With all of that being said I find myself with a major question to answer. Is it more important to have a team that is “the best” according to medical research or a team that is someone you can truly feel comfortable in treating my induvial needs? I honestly do not know the answers at this time. Part of me feels like leaving this team of that is highly ranked would be a huge mistake. The other part of me feels if I don’t feel comfortable with them, don’t I deserve to find doctors I can trust to really know me?
Look for part two, where Alyssa will go deeper into addressing this her feelings on this topic.
What type of heart failure have you been diagnosed with?