ILD Support Group - February and March

Palliative Care described by the World Health Organization

I missed another ILD Support Group this week due to illness. A pity since I learn so much each month and have developed nice relationships with many people in the group. 

The meeting was about oxygen, the different delivery systems, portable oxygen systems and the latest products on the market. I am always interested though I am going through the process to remove all the supplemental oxygen from my life for a time, though I am sure I will need it once again in the future. 

In February, a local hospice organization presented to the group. The worry that we with lung diseases have is what happens at the end, the struggle for the last breaths. I really worried about it. I don't want to struggle and gasp for air. 

Thanks to Susan, I learned that most hospice organizations have a multi-discipline and treatment team for each patient, which includes care-giving and resources for family members. The presenting hospice group is opening a palliative care center specifically for lung patients at my university hospital. Under hospice, one of the medications discussed for lung patients to receive is a small dose of a narcotic (e.g., vicodin, morphine) to help alleviate shortness of breath. A very small dose can overcome the body's desire to breathe hard (leading to panic mode), and actually helps slow down the breath so the body is not straining to bring in air, which it is unable to do. Makes sense to me. There is no thrashing or gasping or fighting for those last breaths. No feeling of being suffocated.  Somehow, that information is very comforting to me as I hope it is to you, dear reader.

I guess my wish is that I die of untreated pneumonia before the lung disease progresses to its expected conclusion. Hopefully, not for a few more years!