Difficult Decisions and How I’m Learning to Overcome Them
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cystic fibrosis,mental health,trikafta
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Difficult Decisions and How I’m Learning to Overcome Them
June 14, 2023
Life is full of difficult decisions. You come to a crossroad and both paths have pros and cons. Based on your prior life experiences and fear of the unknown, you go back and forth in your mind as to what is the best decision for you and/or your family.
A glimpse into our difficult decisions.
This last year has been full of these decisions for me and Kevin to make. I find myself getting caught up in my fear of the unknown more often and feeling stuck, going back and forth and ultimately not deciding but rather just letting things play out. This, I have come to realize, is the third choice that is not always thought of.
Last fall with Liv’s health, we were headed down a path of an inpatient hospital stay, sinus surgery, iv antibiotics and overall just not a good place to be in with her disease. Her care team threw a Hail Mary and wanted to see if we could get the new modulator, Trikafta, approved for her as this has shown to help lower the severity for a lot of CF symptoms. Her insurance approved it and we started giving her this new medicine in hopes that we wouldn’t have any hospitalizations.
Trikafta and our difficult decision to make.
Almost immediately we saw an improvement to her physical health, she wasn’t coughing as much, she didn’t need to be in a daily dose of miralax, her belly wasn’t hurting as much, her sinuses weren’t filled with mucous and she stopped having trouble sleeping. This was such an amazing feeling! Although, weeks after being on it, we started to notice something else… her mental health and behavior started to suffer.
She became more aggressive, she was talking a lot about death and how she just didn’t feel happy, she felt scared, she started acting out at school and had been sent to the office on multiple occasions (she was a kindergartener mind you!) We talked with her team and took her down to a half dose thinking it would help her but we saw little to no improvement.
We are not the only one’s to have experienced these negative side effects. Here are a couple stories of other CF fighters and their experience with Trikafta.
We kept her on it for another couple months, but ultimately, we decided to take her off. The decision was hard, because we felt we had to decide between her physical health and her mental health!
Again, almost immediately we notice a change in her mental well-being. Live started to say things like “I don’t feel mad anymore” or “I’m not as scared as I was when I was on the medicine.” We knew we made the right decision for her at that time!
One difficult decision to another.
We are now 2 1/2 months since being off the medicine and some of her more severe symptoms are coming back. She is having belly pain and distention, she has been coughing up mucous and it has taken longer to get over some of her coughing fits. Her team has told us that there have been successes of reintroducing Trikafta in small and slow dosages when the side effects have been seen. Now comes the crossroads I mentioned earlier….
Should we try to introduce her back onto the medicine we saw such amazing health benefits or do we keep her off to make sure she stays mentally healthy? Again there are pros and cons to both. Yesterday, we had her quarterly CF visit and we did decide to try to slowly reintroduce her to this “miracle drug”, as it has been referred to multiple times in the CF community.
To say I’m scared or worried is an understatement but I find myself having to evaluate where that fear is coming from and whether I need to set aside my feelings for the chance at allowing Liv to get benefits from the medicine while protecting her mentality.
How do you want to overcome your difficult decisions?
These major decisions in life are similar no matter what situation you may find yourself in. I try to hold on to the notion that the fear we often face is not of God and He wants us to hold on and trust that He will pull us through whatever we may face! As flawed humans, that is not always easy! If you happen to be at a crossroads and you find yourself stuck in the non-decision third choice, I encourage you to look deep into why you haven’t been able to make a step forward and face your fear head on!
We are starting Liv back on Trikafta, but we may find ourselves choosing to stop again and wait for something else that may be a better fit for her. But I have found for myself, not making a choice and always wondering what if isn’t the life I want to live nor the way I want to show my daughter how to deal with these difficult decisions. I want her to see the power of choice and how overcome your fears!
Always love!