What the HHT?

A Voice for the HHT Community


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Travel and HHT

By Janice Lee Jones

There are several things that everyone must take into consideration in preparation for travel. However, for those individuals that have HHT, special precautions should be considered.

Fluid Retention

Whether driving, traveling by train, bus or airplane, please ensure that at least two pair of compression socks are worn. Fluid retention is very common during travel due to restrictions in movement and being sedentary for long periods. Since HHT patients usually have issues due to blood loss and low iron with fluid retention, travel can be a serious aggravation to the body. In addition, before and during travel, avoid salty foods as much as possible. This can aid with keeping uncomfortable fluid retention at a minimum.

Medicine and Check-ups

Ensure that the supply of necessary medicines and vitamins are abundant and that if refills should be required, that it is accessible during travel. Furthermore, it is pertinent that all required doctor appointments be taken before travel and refills are current. It is a good idea that one’s physician is made privy to travel plans so he can advise and make recommendations for care. In addition, the doctor can also inform on medical facilities and other physicians that can be referred to in case of emergency.

Planning Ahead

Long lines are very common at airports, train stations, etc. It is wise to arrange for accommodations such as a wheel chair or assistance with going through security check points especially if traveling alone. When making reservations, request for reasonable accommodations. I always do this with travel plans that involve the airport. Due to the lobectomy and breathing challenges, it is difficult for me to quickly move and catch connecting flights.  Assistance in the airport makes my travel more comfortable and less stressful on my body.

Nose Bleedings

It is crucial that consultation with one’s physician be followed regarding nose bleeds as well as preparations made to handle them. The doctor will advise on how to best manage sudden nose bleeds during travel and methods for controlling them.

Whether traveling for business purposes, personal reasons or vacation, having control and understanding about how to circumvent the challenges of HHT are necessary and can be successfully implemented with patience, knowledge and well planned efforts.


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Summer, Summer, Summertime and HHT

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.