“Some people cut it off because they can’t pay for electricity”

“This is a disease that has no cure. It changes everything. You don’t know what’s going to happen in your life.” Faced with this uncertainty, María Martín faced a diagnosis of chronic obstructive pulmonary disease (COPD) in May 2015. despite being Third cause of death in the worldAnd fourthly, in Spain, almost no one has heard of this so-called bronchitis.

In fact, Maria confesses that the worst thing she could have done was to search “COPD life expectancy” on the Internet. The outcome is not at all promising: it ranges between 10 and 20 years from the moment of diagnosis, although it varies according to each case. It is not an incurable disease, but it limits the patient to a great extent. Be connected to an oxygen machine for life,

,The portal has autonomy in my house by 15 meter cable, “I throw it down the stairs and that way I can take the trash down,” says Maria, who, at a minimum, must receive oxygen 16 hours a day. However, when they get a relapse, they have to stay there all day: “That’s why you always have to have the equipment on hand”.

,Childhood respiratory infections increase adult mortality, according to a major study.,

José Alfonso Poveda, who suffered from COPD in 2016, is equally warned: “A crisis could come at any moment,” he says in his interview with EL Español, which begins with “I’m leaving.” . plug Oxygen, first thing, and now we talk.” The two also agree that any daily activity from getting out of bed to getting out of the shower means the world to them. “Life is finite for us. The day you are so short of breath that you can’t even take a step.“, Maria laments.

“At first, you start out tired. But then there comes a time when you get up, take a few steps and you’re already tired,” says Julia Rodriguez, who has grade 4 COPD, also known as the “very severe” stage. It is believed. Disease. He says that his development has been progressive. And although he was diagnosed about 15 years ago, he didn’t start using it until two years ago. Oxygen machine, to which he will have to remain connected 24 hours,

Unsubsidized electricity consumption

Unlike Maria, Jose Alfonso is connected approximately 22 hours a day, “Without her, I’m there two and a half hours in the morning and one and a half in the afternoon,” he calculates. Take advantage of this ‘freedom’ to go out into the countryside and entertain yourself with few people small animals what’s wrong with it. Nevertheless, he takes a portable machine that allows him to leave the house with greater safety.

The autonomy of these oxygen concentrators is only two and a half hours. “If I have to be away for a long time, I take my connectors and ask for a plug,” Maria explains. It even has an adapter for the car. He compares it to a cell phone, although they obviously weigh the same: “The problem is that it weighs too much and I get tired.”

None of the patients consulted by this newspaper have been in danger on the road due to lack of oxygen. still, your life depends on electricity, They are known as electrodependent. And although there are no official figures, patient associations estimate that there are more than three million in Spain. This figure includes not only people with COPD, but also people with disabilities, amyotrophic lateral sclerosis (ALS) and certain kidney diseases.

Maria deplores, “I have complained to all the social organizations about the price of electricity. The answers are always good. They tell you ‘We will study it, we will look into it.’ That’s right, having a machine plugged into his home to continue living is not a sufficient reason for neither him nor Jose Alfonso to receive a subsidy. “I am aware of such cases Patients who were deprived of oxygen for hours because they couldn’t pay for electricity“, laments the coordinator in Madrid of the Association of Patients with COPD.

Maria cannot explain how what is possible for medicine (“I pay four euros for a medicine that costs about 70”) is not possible for the electricity consumption caused by her illness.Why don’t they subsidize my electricity?She asks herself, “What will they do with some of the medications I have to take?” And she herself answers: “Okay, because they know how much it will cost.” There is no exact price, but it is estimated that the oxygen compressor is equivalent to the cost of four 100-watt light bulbs throughout the day. “The lighting is outrageous,” says Julia.

950 euros per month

Jose Alfonso has been using the oxygen machine for less time than Maria and admits that, so far, he hasn’t noticed a big increase in the bill. He becomes more aware of this when he negotiates a power contract with the power company: “I tell them I can’t accept a variable rate. I can’t give myself the pleasure of saying I’m going to breathe, not right now,

In his case he also has the support of his wife and son. Maria, on the other hand, lives alone. “I only have a pension, which gives me 950 euros a month. The apartment I live in is not mine, it belongs to my ex-husband, who left it for me to live in.” On the first occasion he applied for the social bonus and was rejected because “it was two euros over the limit.” Eventually he managed to achieve this and it helped him reduce his electricity costs to some extent. Although There have been many times when he has eaten food thanks to his brothers, “At the rate we’re going, I’m not going to be a Mileurista in my life.”

His daughter also comes to meet him daily, but she does not want to mortgage her life. That’s why she looks for inspiration in herself: “I force myself to go out into the street.” Even if it takes half an hour to go up and down the stairs“, he says from the second floor with no lift. However, there are times when he has to stay at home: “For example, today I can’t go out because it’s cloudy. The fog is criminal.” Pollution and high temperatures also affect these types of patients. “I have air conditioning, but you can’t keep it on 24 hours a day.”

smoking 35 years

Diagnosed with COPD, Maria learned how your body reacts to lack of oxygen: “When we have trouble breathing, we unconsciously breathe through the mouth. Because we think that this way we get more air, but it is not true.” This patient does not know what is the cause of his illness.

On the one hand, he believes that his work may have influenced him. He recalls, “I was working in a nursing home until I was given full disability. Cleaning products weren’t supplied properly and they didn’t give you masks.” On the other hand, she thinks her past as a smoker may also be a risk factor. ,i smoked for 35 years, But I stopped smoking with Euros on January 1, 2002!” he jokes.

The main cause of COPD is tobacco. That’s why José Alfonso is clear: “It was because of tobacco. He smoked like there was no tomorrow.” Although he had not smoked for 16 years when he was diagnosed with COPD, he admitted that he started smoking when he was about 12 years old. “There will be damage,” he doubts. Asked if he regrets that youthful decision, the man from Extremadura considers the consequences of his actions: “It’s not worth regretting now, Plus, when you smoke, they may tell you something you don’t see. “You get paid for the work you do.”

Julia admits that it came as no shock to her that she had been admitted for pneumonia before she was diagnosed with COPD: “Because I smoked a lot, three packs a day, the fact that it There wasn’t much worry.” After hip surgery, a result of the medication she takes for the lung disease, Julia waits to answer whether she is on the waiting list for a lung transplant.

That said, giving up is not an option for any patient. “I’m going to at least stand up to him. I’m not going to get any correction.” As long as I don’t go backwards I’ll be fine“, says José Alfonso enthusiastically. Both patients also value the role of their families: “My children did not let me go into a corner. “I will never be able to live a normal life though,” Maria insists.

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