“Some people are disconnecting because they can’t pay their electricity bills”

“It’s an incurable disease. It changes everything. You don’t know what’s going to happen in your life.” Because of this uncertainty, María Martín was diagnosed in May 2015 Chronic obstructive pulmonary disease (COPD).Although it is The third leading cause of death in the worldfourth in Spain, almost no one has heard of this so-called bronchitis.

In fact, Maria admits that the worst thing she could do was search the Internet for “life expectancy with COPD.” The results were not at all promising: the time frame ranged from 10 to 20 years from the date of diagnosis, although it varied according to the circumstances of each case.It is not a terminal illness, but it does limit the patient to the Lifelong connection with oxygen concentrator.

“In my house I have autonomous access to the portal via a 15 meter cable. I threw it down the stairs so I could take the rubbish down,” said Maria, who must receive oxygen for at least 16 hours a day. Although when she relapses, she needs to stay there all day: “That’s it. “Why do you always have to hold the device with your hands”.

(Respiratory infections suffered in childhood increase adult mortality, large study suggests)

José Alfonso Poveda, who was diagnosed with chronic obstructive pulmonary disease (COPD) in 2016, was also forewarned in an interview with EL ESPAÑOL: “The crisis can come at any time” . plug Oxygen, first thing, now let’s talk. “Both agreed that any daily action from waking up to getting out of the shower means a world to them. “Life is limited for us. You can’t even take a step when you’re short of breath”, Maria exclaimed.

Julia Rodríguez, who was diagnosed with stage 4 chronic obstructive pulmonary disease (COPD), added: “In the beginning, you start to feel tired. But at a certain point, when you stand up and walk a few If you don’t step forward, you’ll be exhausted.” Disease. He said his evolution was progressive.Although he was diagnosed with the disease about 15 years ago, he didn’t start using it until two years ago Oxygen machine, must be connected 24 hours a day

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Unsubsidized electricity consumption

Unlike Maria, José Alfonso stays online approximately 22 hours a day. “Without him, I would have been there two and a half hours in the morning and an hour and a half in the afternoon,” he calculated.Take advantage of this “freedom” to go out into the countryside and have some fun Small animals Something is wrong with it. Even so, he carries a portable machine so he can leave home more safely.

The autonomous operation time of these oxygen concentrators is only two and a half hours. “If I’m going to be away for a longer period of time, I pick up the connector and ask for the plug,” Maria explains. “It even has a car adapter.” He compares it to a cell phone, even though they obviously have the same weight: “The problem is it’s heavy and I get tired.”

None of the patients consulted by this newspaper were in danger on the street due to lack of oxygen. despite this, Your life depends on electricity. They are called electrically dependent. Although there are no official figures, patients associations estimate there are more than 3 million patients in Spain. This number includes not only people diagnosed with COPD, but also people with disabilities, amyotrophic lateral sclerosis (ALS) and some kidney diseases.

“I complained to all the social organizations about the electricity bill. The answer was always good. They tell you ‘We will study it, we will look at it,'” Maria denounced. True, plugging a machine into her house to continue living wasn’t a good enough reason for her and José Alfonso to receive subsidies. “I know some cases Patient cut off oxygen for hours because he couldn’t pay electricity bill”, laments the Madrid coordinator of the Association of People with COPD.

Maria could not explain why medical treatment (“I paid 4 euros for a drug that costs about 70 euros”) was not possible because of the electricity consumption caused by her disease. “Why don’t they subsidize my electricity bill?She asked herself, “What are they going to do with the few medications I have to take?” She answered herself, “Well, because they know the expense it’s going to cost.” There’s no exact price, but it’s estimated that the oxygen compressor is equivalent to four The cost of a 100-watt light bulb throughout the day. “The lights were too harsh,” Julia said.

950 euros per month

Jose Alfonso, who has been on an oxygen machine for less time than Maria, admits that so far he hasn’t noticed a significant increase in his bill. He felt this even more when he was negotiating power contracts with power companies: “I told them I couldn’t accept sliding rates. I can’t bring myself to happily say now I’m going to breathe, not now“.

For his part, he also has the support of his wife and son. Maria, on the other hand, lives alone. “I only have a pension, 950 euros per month. The apartment I live in is not mine, it belongs to my ex-husband and he left it to me.” The first time he applied for a social bonus he was rejected because “it was two euros over the limit.” “. He finally managed to receive it, which allowed him to lower his electricity bill somewhat.Although Sometimes he eats because of his brother. “At the rate we’re going, I’m not going to be a mileage person in my lifetime.”

His daughter also visits him every day, but she doesn’t want to mortgage his life. That’s why she looks to herself for motivation: “I force myself to go out into the street.” Even if it takes half an hour to go up and down the stairs“He said on the second floor where there is no elevator. However, sometimes he has to stay at home: “For example, today, I can’t go out because it is cloudy. Fog is a crime. “Pollution and high temperatures can also affect such patients. “I have air conditioning, but you can’t leave it on 24 hours a day. “

Smoking for 35 years

A diagnosis of COPD taught Maria about how your body responds to lack of oxygen: “When we are short of breath, we unconsciously breathe through our mouth. Because we think we get more air that way, but that’s not the case. “What the patient didn’t know was the cause of her illness.

On the one hand, he thinks his job may have influenced him. “Before I was granted total disability, I worked in a nursing home. Cleaning products were not administered properly and they didn’t give you masks,” he recalled. On the other hand, she believes her past smoking experience may also be a risk factor. “I smoked for 35 years. But I quit smoking with Euros since January 1, 2002! ” he joked.

Tobacco is the leading cause of COPD. That’s why José Alfonso knows better: “It’s because of tobacco. He smoked like there was no tomorrow.” Although he hadn’t smoked in 16 years when he was diagnosed with COPD, he He admitted that he started smoking when he was about 12 years old. “The damage is there,” he suspected. When asked if he regretted this young decision, the man from Extremadura faced the consequences of his actions: “It’s no longer worth regretting

. Additionally, they can tell you anything you can’t see when you smoke. “You have to pay for what you do.”

Julia admits she wasn’t surprised when she was admitted to hospital with pneumonia before being diagnosed with COPD: “Because I smoked a lot, three packs a day, actually it didn’t worry me too much.” After hip surgery , because of the medication that must be taken for this lung disease, Julia will need to wait for an answer if she is on the waiting list for a lung transplant.

That said, giving up is not an option for any patient. “At least I’m going to stand up to him. I’m not going to get any better. As long as I don’t go back, I’ll be fine“José Alfonso said enthusiastically. Both patients also valued the role played by their families: “My children did not put me in trouble. Although I will never be able to live a normal life,” Maria stressed.