As thymidine kinase 2 deficiency (TK2d) progresses, the muscles used in breathing, eating and swallowing weaken over time. The resulting dysphagia, or difficulty swallowing, can be dangerous: Patients may be at risk of food entering their airways instead of esophagus, leading to choking. A feeding tube can help avoid this choking risk, as well as help patients get enough nutrients when chewing becomes difficult.
What is a feeding tube?
Also known as enteral nutrition, a feeding tube is a soft, flexible plastic tube that is inserted either through the nose or through the abdominal wall to give direct access to the stomach or small intestine. A feeding tube can provide nutrients in a liquid formula, and can also deliver medications and fluids directly to the stomach or small intestine.
Having a feeding tube doesn’t prevent someone from eating and drinking normally, if they chose to. This means that people with TK2d can use a feeding tube to safely take in nutrients without giving up eating entirely.
When is a feeding tube used in TK2d?
In people living with TK2d, dysphagia gradually worsens, increasing the risk of aspiration (food or liquid “going down the wrong pipe”). In addition to choking and coughing, aspiration can lead to respiratory infections and pneumonia.
On top of the risk of choking, TK2d can make chewing a long and difficult process.
All of this means mealtimes can become exhausting, stressful events. When the risk of choking becomes too high and overall quality of life is impacted, many patients and families decide to place a feeding tube.
Learn more about TK2d treatment and care
How is a feeding tube inserted?
Feeding tubes can be inserted via the nose (called a nasogastric tube) for temporary or short-term use or through the abdominal wall for long-term use. Nasogastric tubes enter the nose and go down the esophagus and the stomach. In patients with TK2d a feeding tube is not generally a short-term solution, so feeding tubes are most often inserted into the stomach or small intestine through the abdominal wall.
The following feeding tubes are the most common in TK2d. They both require a surgery to place.
Gastrostomy tube (G-tube)
A G-tube is the most commonly used feeding tube in TK2d. It is a discreet and practical option that delivers nutrition, medication and liquids directly to the stomach. There are many types of G-tubes; your care team will discuss which one is the best fit.
Jejunostomy tube (J-tube)
This feeding tube option bypasses the stomach and delivers nutrients to the small intestine with the help of a pump. Its use is recommended when the patient has trouble digesting food or there is a risk of food moving from the stomach to the esophagus, called reflux; reflux can lead to food being aspirated into the lungs. J-tubes require slow, continuous feedings, since the intestines can’t store food like the stomach does.
Sign up here to get the latest news, perspectives, and information about TK2d sent directly to your inbox. Registration is free and only takes a minute.