Losing Control: A CF Patient’s Journey Through Mental Health
By: Ryan Mincer
Have you ever felt like you are not yourself anymore? Like everything you knew about yourself up until this point had suddenly changed? Like you had become someone you didn’t know? Someone you didn’t like? Have you ever felt like you were losing control? These are all feelings I felt over the last two years.
Normally we, as CF patients, are used to feeling like we’ve lost control because our bodies aren’t physically doing what we want them to do – they simply stop working, fail to thrive -- and we must go to the doctor to put the pieces back together. In this case, both my body and my mind were broken.
I was diagnosed with non-tuberculosis Mycobacterium Abscessus (I will call it “NTM” from here on out) back in 2013. At the time, I was receiving care at the UC San Diego Adult CF Center in La Jolla, CA. My doctor at the time advised me that this was a particularly difficult-to-treat, and damaging, bug that is typically found in soil and water. It would require years and years of IV antibiotics, he said. He explained that the cost of doing the treatment might be greater than the benefit of *trying* to treat or eradicate the bug. He went on to explain that he wasn’t thrilled about the idea of treating it, but would be happy to do so if I chose. At the time, my lung function was around 60% and holding steady. I decided not to treat the NTM. At the time, I did NOT know that refusing treatment would mean that many high-profile transplant centers would refuse to consider me for lung transplant if I decided to leave the bug alone and not treat it.
Fast forward to 2017. I had moved to the UCLA CF Care Center in Santa Monica – and was advised, during a lung function decline, that the NTM was likely the culprit and that I should begin treatment immediately. It was then that I learned that many transplant centers consider NTM a contraindication to performing transplant. In other words, they won’t even consider doing the transplant because of the complications that may arise in the aftermath of transplanting a patient with NTM. I heeded my doctor’s advice to treat and was referred out to the UCLA Infectious Disease team. I also consulted with some of the world’s leading experts on treating NTM at National Jewish Health in Denver, CO before beginning treatment. They coordinated with my UCLA CF Center to establish a treatment regimen.
I began my treatment of NTM in October 2017. The regimen, tailored to my sensitivities, was 4 very caustic antibiotics. To be generous, the treatment was nothing short of traumatic. The doctors were all accurate in their assessment of how difficult it would be. I ended up being on IV imipenem for 8 months before I told the doctors to stop all NTM treatment; I simply couldn’t handle the side effects of the drugs. I had never been a particularly nervous person, but now I was having multiple and frequent panic attacks every day. I was constantly depressed and felt hopeless. I wasn’t able to do as many of the activities that I once did. Constipation was horrible. No matter how many liquids I drank, I could never stay hydrated. My skin became wrinkly like an 80-year-old man’s. I became paranoid that something ominous or bad was going to happen – with no good rational reason to believe this was true. My mind was spiraling out of control and my only response was to tell the doctors to STOP the NTM treatment.
You should know something about me. I have always been anti-psychiatrist, anti-psychologist, and anti-counseling. I grew up in the Christian church, and I was always taught that if you know God, he will give you a peace that surpasses all understanding. I wasn’t getting that peace, no matter how hard I tried to trust in the Lord. I felt like I was a “broken Christian” if I decided to take psychiatric drugs. In hindsight, I realize that this was faulty logic. But at the time, there was tremendous guilt associated with even seeing a psychiatrist. I realize that not all readers are from a Christian background, yet I think there is a strong parallel that can be found in secular societal stigmas as well. Even secular society may frown upon therapy and psychiatric drugs – because society places a very high emphasis on people looking perfect and being perfect. Seeing a psychiatrist is admitting that our mind is broken and in need of help -- in need of healing.
Back to the story! I was actively being seen by a rotating UCLA psychiatrist. They gave me a different doctor every 6 months as they don’t offer the option of allowing you to stick with a single psychiatrist. During this NTM treatment, they had me taking mirtazapine, lorazepam, clonazepam, Cymbalta – and several others that I’m probably forgetting – over a 2-year period, up until the present moment. They all worked for a brief time, with varying degrees of effectiveness. Many of these drugs eventually either stopped working, or started giving me adverse psychological effects after a prolonged period of time. Especially the benzodiazepines! Let me tell you, when they say that these drugs can be addictive and give you withdrawal symptoms, they aren’t kidding. Although the benzos were extremely helpful to counter the constant and debilitating panic attacks, eventually, as I switched over to a less-caustic pill-only regimen for treating the NTM, I asked to start weaning off of the Klonopin (clonazepam) since my original mental health issues started subsiding. I started weaning off slowly, but even that tapering caused me extreme anger, frustration, impatience, and wild mood swings. I was successful at tapering off, but it was quite a wild ride.
I was also advised, multiple times, to see a psychologist/therapist to discuss my issues at length in a counseling environment. The psychiatrist was really only there helping me with medication management, which was certainly helpful, but was not really wholistic medical care on the mental health side. Living in a relatively remote area of Los Angeles County (albeit a small urban metropolis), Azusa is not teeming with great therapy options. As such, I have not yet found a good therapist (to date) that meets my needs and is accepted by my insurance. But in the past, I have known what a good therapist is like and I highly recommend going, even if you don’t think you have any “problems.” We ALL have stuff to work through, whether we recognize it or not – and finding a professional to help you work through it is SO incredibly important. If you need help, please talk with someone (ie – a social worker in CF clinic) about seeing a licensed professional that can help you.
What is the moral of the story? It is okay to admit that you’re broken. There is no shame in it. Embrace it and look at it as an opportunity to grow and help others once you’ve come out the other end of the tunnel. Never believe that your physical or mental brokenness is tied to your intrinsic worth.
I want you to know that you have tremendous value, whether you see it or not – and getting help affirms that value. Lastly, everyone’s journey will look different. It’s okay if it takes you a while to get better. I am still healing myself and I expect that it will take a while to fully heal from all of the medical trauma. Barring supernatural intervention, healing takes time. Be kind to yourself, be honest with your mental health professionals about what is working and what is not working, and always keep in the back of your mind that the purpose of your treatment is to get better and/or have a better quality of life.
About the author:
Ryan Mincer is a 33-year-old Cystic Fibrosis patient who lives in Azusa, CA. He is currently being seen at the UCLA Adult CF Clinic in Santa Monica. His FEV1 is currently around 33% and he is attempting to get early access to gene modulator drug VX-445 through the Compassionate Use Program. He is happily married (for 6 years) to his wife Mary (no kids...but he has two cats). Favorite pastimes include reading, writing, and playing golf. He recently wrote a book on the topic of Faith and Disabilities (from a Christian perspective), and is in the final stages of editing.