Congestive heart failure can be frustrating because (1) you are always on the watch for danger signs that your condition is deteriorating, (2) you have to be very careful about your diet, your exercise routine and stress management, and (3) fatigue can come upon you without warning and seemingly without cause.
Before I was diagnosed with congestive heart failure, I loved to travel. During the first year or two after I learned that I had heart failure, I was a little hesitant to go on a long vacation, especially to another country. But I have learned that travel is not out of the question when you have a pacemaker/defibrillator. In fact, I think travel, which involves seeing new sights and learning about new cultures can be therapeutic. But you need to keep a number of rules in mind before you hop on a plane or a cruise ship.
First, if you are leaving this country to travel to parts unknown, make sure that you get good trip insurance. Yes, the premium does cost money, and I suspect some people might like to save that money to commit to purchases overseas. But after having reviewed my medical bills over the past four years, there is a considerable amount of money is spent between what I paid and what the insurance company paid. Plus I have not had what I would consider a major heart episode and lengthy hospital stay. While I have good insurance while in the United States, I do not know the extent that my expenses would be covered especially if I visit more than one country. Additionally, travel insurance is a precaution in the event I would need to be medically evacuated. I would hope that this would not be necessary. Then again, I never thought I was a candidate for heart failure. So best to be prepared.
I also need to reinforce what I talked about in a previous post. Before you hop on a plane, you will have to go through security screenings which can be an interesting process. It is wise to avoid going through the metal detector and at all costs. Instead you should ask for a pat-down screening or a screening by a body scanner if they have it. At all costs, you must be able to articulate to the TSA screener that you have a cardiac device implanted in your chest area. You need to do this because if the screener uses a wand on you, this creates a definite risk that the device will be reset – and have a very bad effect on you. Yes, I understand that a pat-down search is more intrusive than other types of screenings. But I have never heard that a TSA agent’s hand has reset a cardiac device.
You should also be aware that there are some locations overseas where you will be screened – for example, places like museums or palaces. Cruise ships will also likely ask you to go through a metal detector when you re-enter the ship at each port. So learn to say in a very articulate and firm manner (or in other words, sing out loud and proud): I have a pacemaker and cannot go through a medical detector or have a wand waved over the pacemaker. Even in foreign countries, the guards at the sites speak English and will understand what you mean. (Note: I have learned that people in general understand the term pacemaker than defibrillator. I think this may be because there may be assumption that you are referring to the type of portable defibrillator that is on the wall of many public buildings).
You may be on vacation, but your diet and prudent health precautions should never go on vacation. So even though you would love to throw caution to the wind and eat whatever you want, and exceed the fluid limit you are under – DO NOT DO THIS! Any temporary enjoyment you have will be overcome by the shortness of breath and fatigue you will begin to feel. I have found that you can usually find a number of healthy options on menus, usually in the form of grilled chicken or fish. (Plus these dishes taste wonderful as well, probably because I wasn’t cooking them!) I also found that because I was so good at watching my diet, I could occasionally splurge on desserts, which are not salt laden. I just made sure that I was getting a fair amount of calorie burning walking through our sight-seeing excursions.
I also found that on the cruise, it was possible to request a sodium free diet. Of course, check your cruise line’s website to see how far in advance you need to submit the request. I found that my cruise line had my special request programmed into their system so that regardless of which restaurant I ate at, they knew that I had a dietary restriction. (Although they referred to it as a food “allergy” which I thought was interesting). The wait staff was always able to tell me which dishes could be adapted to be lighter in sodium.
I also knew that ignoring the fluid restriction could make me too miserable to enjoy my trips. I knew I would be doing a lot of walking and did not want to be short of breath during sight-seeing trips. So I kept a running tab each day of how much fluid I drank. Even though I have not been told that I can’t have alcohol, I am very conscious that whatever alcohol I would drink would need to be factored into a limit of no more than 64 fluid ounces a day. (I have found that this amount is enough to be hydrated but not so much that I begin to retain excess water). So while I would have a drink at night, I wouldn’t be enjoying wine with the meal nor doing unlimited tequila shots!
I learned to look at the signs inside tour sites to see if there was something that might be beyond the limits of what my damaged heart would be able to perform. For example, there was a church in Italy that had a bell tower that tourists could climb up. But there was a sign that gave the number of steps (I think it was over 400) and also cautioned people with things like pacemakers that they should not attempt to climb the Bell Tower.
I learned that it is helpful to travel with people who know your issues. They will encourage you to do as much as you can so that you have the maximum travel experience. But they will also keep an eye on you to make sure that the steep inclines and steps aren’t wearing you out. They will be the models of common sense when they realize that you are in over your head (or heart). For example, we visited Pisa while we were in Italy. The people I was traveling with (including my sister) supported me in trying to go to the top of the Leaning Tower. But I got to the first landing I was panting loudly, but saying “Oh, I can go up further”. My group told me that I needed to go back to the bottom of the tower and wait with the tour guide. My sister was kind enough to skip the climb and keep me and the tour guide company.
When I went on the cruise in July 2016, I learned that the cruise line described the level of physical effort required for each excursion. If I ever go on another cruise, I will learn that I should not just think of inclines and stairs as being the only thing that I should take into account when I determine which excursions are right for me. I learned the hard way that in the initial days of the trip, I might have higher amount of fatigue due to the time change, the altitudes, and the change of routines. So I might want to scale back what I do in the initial day or two of the cruise.
I also learned that it is probably not a good idea for me to do tours where you are going for an extended period of time, say from 8 in the morning till 10 at night. I found that I do better on tours that last no more than 3 or 4 hours. So this might mean booking tours that are different than other members of my group. Usually a few days into the tour, you have met enough people that you will see familiar faces on the excursions so that you won’t get lost!
The bottom line is that I have learned the hard way that you cannot predict what twists and turns your life will take. But no matter what your challenges are, life is a gift, and you need to enjoy each day. This means taking opportunities to go on wonderful trips, meet new people and see new things. Your trip will be a lot more memorable, in a good way, if you follow one simple rule: When you are packing the comfortable footwear and rain gear, make sure to also pack your common sense so that good heart health is still at the top of your list of priorities.
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.