Support Registry Update

Possible Ongoing Costs & Challenges

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Sandrianna Alvarez
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After surgery that results in the permanent loss of natural speech and a lifelong tracheostomy (stoma), many people face significant ongoing expenses and daily challenges that insurance often only partially covers — or does not cover at all.

Common ongoing costs include:

• Heat & Moisture Exchanger (HME) cassettes and related supplies — often $3,000–$8,000+ per year

• Adhesives, baseplates, skin barriers, and specialized stoma care products

• Cleaning supplies, brushes, and infection-prevention items

• Tracheostomy tubes or buttons (when used) and regular replacements

• Suction equipment and catheters

• Speech therapy, swallowing therapy, and respiratory therapy

• Communication apps, tablets, or dedicated speech devices - most of these come with monthly subscription costs. 

• Travel and lodging for specialist appointments

• Mental health support and counseling

Lifelong challenges related to a permanent tracheostomy can include:

• Daily stoma care and the constant need to manage mucus

• Higher risk of mucus plugs, which can become dangerous if not cleared quickly

• Increased risk of respiratory infections such as pneumonia or bronchitis

• Skin irritation or breakdown around the stoma

• Changes in the ability to smell and taste

• Limitations with swimming, bathing, and exposure to dust, smoke, or strong scents

• The emotional and social impact of permanent changes to breathing and communication

These costs and challenges are ongoing for the rest of her life. Any support raised will help cover essential supplies, therapy, adaptive equipment, and quality-of-life needs that insurance often leaves behind, so she can focus on recovery and staying connected with the people she loves.

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