Independence

My daughter was born in heart failure 25 years ago. We’ve had many setbacks and many blessings along the way.

A challenging transition

It’s been extremely challenging to transition from pediatric to adult care. In pediatrics, we were treated with a team approach that was designed to make you feel safe and taken care of. There were social workers, child life specialists, teams of nurses, and professionals to answer all of your concerns and guide you through all the tests, procedures, and medication you needed.

As she got older we knew her transition to adult care was going to be a difficult one. She had been through so much trauma and felt very safe in their hands. As we move into adult care we are learning that you need to advocate for yourself. There is no formal team behind you guiding your every move. The same type of transition was needed in our home care. If we are lucky there will come a time when our loved ones are able to start caring for themselves. To relinquish care of a loved one is emotional and frightening. We fear they will not follow through and be able to manage the stress and diligence needed to care for themselves.

It was not enough

In our case, we planned for my daughter's college life. We new many transplant patients have had a rejection in the late teen years as they left home and started college life. I went to work to choose the perfect roommate, air conditioning, new clean dorm room, college doctor on board, 20 minutes from home, and a major hospital in town. Every precaution to keep her safe. Yet it was not enough.

The flexible schedule and new student life she was now navigating did become a problem for her medication schedule. She did not realize how even a small variation in her particular medication could throw her into rejection in such a short time. For the first time in her life, she loved her freedom. No one knew about her transplant and she was starting a new life. Even given the knowledge by her doctors on how others in her situation wound up in rejection, she still landed in an ambulance in stage four rejection after a month on her own.

The importance of planning

I know it sounds obvious to take meds on time. It sounded obvious to me as well. I would call her and ask her if she was taking her medicine on time and she would assure me that she had it under control and that things were going well. The problem for her was for the first time in her social life she was one of the gang. She would get invited to go for coffee after class, lunch out, dinner out, and had not properly planned for this new lifestyle with carrying medications, water, and the ability to navigate her new world. Her thought process was I will take it when I get back to the dorm but then never made it back to the dorm because she was out and about. I see how it happened and can’t stress enough how important it is to plan for this.

Teach them how to navigate the process

It was a huge learning curve for me as well. My advice to you as your child begins to reach adulthood is to navigate the transition in steps. Begin to have them involved in medicine routines and orders, scheduling appointments, health insurance procedures, and advocating for any accommodations they may need. Have them listen to calls you make on their behalf about medical bills and how to get the problems resolved. Teach them how you record conversations and have them take their own notes. It becomes routine for the caregiver but can be overwhelming for a teen who’s already dealing with the typical adjustments to adulthood.

Step by step toward success

I understand as parents we don’t want to put any undue pressure on their plate, but in the long run, it will help to ensure they know what needs to be done to take care of themselves. Step by step they will begin to understand how to advocate for themselves and how their particular medical protocol works best. If they are involved in the areas I have mentioned it will be a gradual transition that can help them to be ahead of the game in the long run.

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