What does palliative care mean in my post-transplant life?
I've learned that focusing on my quality of life is not just for the hospice phase
I had a virtual call recently with my cystic fibrosis (CF) physician, who’s also a lung transplant expert. More recently, he obtained credentials in palliative care as well.
Since my double-lung transplant in 2020, I see him every few months under his palliative care hat. On this virtual call, as soon as we’d reviewed my vital signs and medication list, he said, “Now tell me about anything you’d like to talk about.”
Years ago in medicine, palliative care was known as a bridge to end-of-life hospice, helping terminally ill patients and caregivers begin to transition from a treatment plan to comfort care. More recently, however, palliative care is aimed at optimizing quality of life for people with serious and complex illnesses. The American Lung Association defines palliative care as “specialized medical care providing physical, emotional, and spiritual support for people living with chronic conditions or serious illness.”
Being under this umbrella of care has addressed many issues for me, including my distal intestinal obstruction syndrome, anxiety, pain management, and menopausal symptoms, among others.
The changes I’ve seen
While I was having only CF care, I was always extremely happy with my healthcare team. I felt they were caring, knew my specific health issues, and were extremely responsive. But the palliative care approach, in my opinion, takes it a step further. That focus is on improving my quality of life.
Before receiving this type of care, I’d been experiencing post-menopausal hot flashes and poor sleep for over a year. I’d seen my local gynecologist, but many of the hormone treatments available had side effects that are contraindicated with my other health issues. While this complaint might seem small, having these symptoms multiple times a day and throughout the night made me uncomfortable, annoyed, and exhausted.
After all I’ve endured in my 53 years with cystic fibrosis, it feels good to focus now on improving my quality of life. Out-of-the-box thinking from my physician helped me change a blood pressure medicine to one with a side effect that could possibly improve hot flashes. And it’s worked wonders! To say that my quality of life has improved in that area is a vast understatement.
Having someone treat me who is not only a CF expert, but also proficient in lung transplant and palliative concerns is the trifecta of medical care for where I’m at in my health journey. I feel I’m now being seen and treated as a whole person, with the emphasis on alleviating as much of my suffering as possible. And for that, I’m grateful.
Have you been treated with palliative care? If so, I’d appreciate hearing about your experience in the comments below.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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