What the HHT?

A Voice for the HHT Community

Summer, Summer, Summertime and HHT

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By Janice Lee Jones

 Summer is kicked off with a bang for the Cure HHT family with HHT month and the various activities that take place during the month of June. However, while engaging in various outdoor fundraising activities that benefit the cause and enjoying the long and hazy, hot days of the season, there are particular precautions that those dealing with HHT must take.

Protect Yourself from Heat


First, heat protection is crucial. This is especially true for those that have encountered AVM’s in the lung and/or have experienced a lobectomy. I speak personally regarding this. Heat and especially humidity affect the breathing tremendously. It is important to ensure that prescriptions for inhalers are current and available. Follow the instructions of your pulmonary function physician as well when it comes to medication. If temperatures are extreme (heat index 100+) arrange to stay inside as much as possible. I carry a heat reflective umbrella which is manufactured by Cooli Bar. It is excellent and keeps the damaging heat rays from intensely affecting me. Most importantly, stay hydrated with water. Occasionally I may have Gatorade, but drink water and ice tea (tea is a diuretic) greatly.

Watch for Fluid Retention in Lower Legs and Ankles

Speaking of tea as a diuretic, that leads me to my second point for HHT patients: summer heat and humidity can cause fluid retention in the lower legs and ankles (edema). I do everything that is possibly available to eradicate this issue. This includes: keeping my feet on a movable stool at work under my desk so that the circulation is constant helps; watching my salt intake and utilizing lite salt with potassium; drinking unsweet tea, herbal teas and coffee (iced); not showering or bathing in hot water; and of course, elevating my feet at night to relieve pressure.

Change your Exercise Routine

I blogged a few months ago about exercise for HHT patients being quite challenging. This is significantly true for summer months. I change my exercise routine in the summer by doing things inside away from heat and where the air conditioning is abundant. Going up and down the stairs; riding a stationary bike; engaging in 10 minute quick workouts; and partaking in yoga and/or Pilates are great indoor exercise plans.

Enjoy the Summer Fruits

Enjoying the summer fruits such as peaches, nectarines, cherries, and watermelon is a must. This is most true for those HHT patients who attribute the internal bleeding to the lower bowel (intestines). Having as many wholesome and fibrous fruits and vegetables are a must to aid with elimination. In addition, take advantage of high proteins that are offered from fish and beef and that we love to throw on the grill during this season. HHT patients need a good high protein diet to aide in the sustainment of energy and its production. Summer is also the season of smoothies which is an excellent way to consume both protein (adding protein powder and avocado) and fiber as well as other pertinent vitamins and minerals that the body craves and desperately requires. Furthermore, they are cold, cool and yummy.

I hope this brief note on summertime is beneficial to you all. Enjoy your summer and vacation time. Most importantly, be safe and take care of yourselves.

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