As a social worker, my career has primarily focused on crisis intervention and psychiatric hospitalizations for those with mental illness. As a professional, I understood the fragility of the mind. But through my transplant experience, I learned firsthand just how fragile it can be.
While recovering from my transplant in the intensive care unit (ICU), I received a combination of medications to manage my pain, which caused substance-induced psychoses. I recall feeling as if I was falling into a dark hole, seeing celebrities/extraterrestrials, and hearing children playing. I was informed of the possibility of hallucinations from the medication, but I believed that my will and faith would combat any anxiety and depression I would face. I was given medication to reverse the reaction, which also meant that I was put back on the ventilator so that my pain could be better managed.
Depression eventually set in when I was transferred from the ICU to the medical floor. I felt that I was unable to control my environment or make decisions for myself, which was frustrating. Anxiety arose from my distrust in my new lungs, causing panic. Although my new lungs were working effectively, I was accustomed to oxygen and struggling to breathe.
From my career, I knew that patient experiences in the hospital can lead to medical post-traumatic stress disorder (PTSD). While I was in the hospital, I experienced two intubations, 10 painful chest tubes, the placement of a G-tube, a lack of pain management, and the inability to speak, which led me to experience PTSD symptoms of my own. Ironically, I had all the tools to combat these symptoms; somehow, it was easier said than done. It was impossible to implement the techniques and coping skills I typically used with my patients in the hospital setting as a patient myself, where I was unable to do much of anything at all.
My mental health continued to decline as the days passed and I felt that I had no control over my own situation. My treatment team was empathetic as they saw my enthusiasm for life quickly fade. They were able to address my needs by having the stress management nurse practice meditation and guided imagery with me. Affirmations and mantras were a beneficial part of my cognitive behavioral therapy. I was prescribed an anti-anxiety medication, which often put me to sleep. This was beneficial to my recovery process, as sleep is vital for healing and mental hygiene. I also found that leaving the unit and going outdoors invigorated me. After a physical therapist came to assess me, I was able to explore the hospital with approval from my nurse.
I think it's best when clinicians encourage pre-transplant patients to explore ways to preserve their mental health when undergoing such a life-changing -- yet possibly traumatic -- experience. Meanwhile, patients should consider the circumstances in which they will be able to implement these activities and have several alternatives.
In hindsight, I would have used my adult coloring books, made a music playlist, and/or watched my favorite movies on my tablet. It is equally important for family caregivers to have ideas for keeping their loved ones' mental health intact. For example, my mother purchased a small fan for my room because my hot flashes made me feel miserable. She also asked the doctors if I could suck on hard candy since I was unable to eat or drink for weeks.
Psychological services were available at my transplant center and each patient is assigned a psychologist. I utilized my psychologist prior to transplant to cope with some anxiety surrounding intense pain after surgery. Additionally, while on the waitlist, they offered group psychoeducation sessions that focused on coping skills, anxiety reduction, and mindfulness.
All these therapeutic sessions were useful during my post-transplant journey. But at the same time, it's hard to know what to expect because everyone's journey is completely different.
At times, I began to regret my decision to undergo transplantation because of the pain and medication side effects. But, I held on to words from my psychologist: “The first month will be the most difficult.”
As both a clinician and a patient, this experience has allowed me a unique perspective. I understand the struggle on behalf of the patient, but I can also articulate on behalf of a provider. In my future endeavors, I plan to advocate for mental health practices in the CF transplant community.