Downside: Emotions and daily challenges that come with using a trach and IMV  

Using a trach and IMV will bring big changes to your daily life. It’s important to understand that you will need to rely on loved ones or caregivers for significant day-to-day support. Some care tasks, like lung suctioning, can be uncomfortable. You and your caregiver(s) will also need to plan ahead for everything from short outings to overnight trips to emergency situations. When you leave home, you will need to bring medical equipment with you.

The transition to trach and IMV feels different for everyone. For some people living with ALS, getting a trach and IMV comes with big changes like arranging for loved ones to help with your care, hiring caregivers, or moving to a skilled nursing facility. These changes can be especially hard for people who prioritize their independence.

On the other hand, if you’ve already made significant changes since your ALS diagnosis — like arranging full-time caregiver support or getting a power chair, for example — adapting to trach and IMV may feel less difficult. Plus, some people feel that using a trach and IMV gives them more freedom to spend time with the people they care about.

The financial cost of using a trach and IMV is also stressful for many people living with ALS and their families. For some people, these challenges can bring up strong feelings of depression, frustration, or anxiety.

Some people living with ALS feel that the benefits of using a trach and IMV outweigh the daily challenges and limitations. Others don’t feel that using a trach and IMV is “worth it.” Remember, it’s always your choice whether to use a trach and IMV. Talking through your options with your family and your ALS care team can help you make a decision based on your values.