Ruth and the struggle of amputee patients: "They give you prostheses that they don't teach you how to use"

Santiago Saiz

Ángel Navarrete (Photos) Madrid

Madrid

Updated Thursday, February 8, 2024-15:24

A couple, Ruth and Dani. Two little daughters. Two jobs.

And suddenly, tragedy.

She contracts bilateral pneumonia. Septic shock. Induced coma. Heart attack. Darkness. Finally, consciousness. Lack of blood flow. Gangrene. All four limbs amputated. Public health saves her life. And she feels "very grateful." But she doesn't make it easy to rehabilitate her for a second life with

a 96% dependency.

Life appears in Rut's dark eyes, animating her new carbon fiber hands. This morning she feels "a little low" but tries to concentrate on each exercise. She does them slowly, she learns quickly, she feels that it has to be done as soon as possible. "Everyone says 'calm down, patience', as if I had unlimited time. I'm 43 years old, I've been hospitalized for six months and I'm going to spend months, years, learning to walk, eat, shower."

Following the instructions of occupational therapist María Navarro, for two hours Rut manipulates geometric figures of different densities, tries to peel a pear and a banana.

"We are working on activities of daily living: clothing, eating, self-care,"

explains her instructor. She has to hold the prostheses, almost a kilo each, with the portion of her forearm that she keeps. Electrodes transmit muscle movement from the stump and convert it into the finger clamp.

From time to time Ruth brushes her hair from her forehead with her new right hand. He wears a bracelet and his daughters have decorated the prosthesis with stickers; She fears that the little girl will not remember her with hands and feet. Just as it was until July. "We both have hope that this will change, that he will return to work, to socialize, and I, to be a little autonomous. I hope for a reasonable quality of life, but I don't know when." Dani smiles. She is on leave. She cannot take care of her partner, her daughters, and her work obligations at the same time.

Rut learns to handle a forkÁngel NavarreteEL MUNDO

"Everyone says 'calm down', as if I had unlimited time. I'm 43 years old, I've been hospitalized for six months and I'm going to spend months, years, learning to walk, eat, shower."

Ruth

And suddenly, helplessness.

Half a month ago, Rut started a campaign on the online platform

change.org

to demand that at least one public hospital in each province have occupational therapists and physiotherapists with training in amputations. The petition, already supported by 50,000 signatures, is based on his experience. They live in Valladolid and have seen how the physio assigned to them by the public health system of Castilla y León had never worked with their prostheses, although they are included in the catalog of the National Health System.

"Social Security covers these prostheses and does not teach you how to use them,"

summarizes Rut. They have also not received an appointment from an occupational therapist. The Board's Health Department claims to have no direct knowledge of your request.

Why is it important to learn to use prostheses?

Noemí Antolín is the president of the National Association of Amputees of Spain (Andade). She endorses what happens in Castilla y León and extends it to "almost all of Spain." She describes the collective's day-to-day life as "a struggle."

"You're going to save my life for what, to stay in a bed?"

, she explains over the phone.

"An amputee leaves the hospital in precarious conditions because they only care about being discharged. Everything clinical and medical is phenomenal. You get home, and what do you do with your life?"

Noemí Antolín, president of Andade

His association defends the creation of multidisciplinary units "like a chain, with its protocol" that integrates all the profiles necessary to treat these patients. Although there is no precise data, the Spanish Federation of Orthotists and Prosthetists (FEDOP) places the number of amputees throughout the national territory at around 40,000.

"I think my obligation is to report it because I am here thanks to the help of others," Rut adds. He states it as he tries to write. On the second day of practice the handwriting becomes legible. Small advances that instill hope. She and Dani agree that specialized knowledge about amputations exists - they have found it in the Alcalá Orthopedic Clinic in Madrid - and that is why they ask that public health professionals be trained.

Using family savings, the couple pays for the extra 600 euros per month that means three days in a row, made the most of, in the capital. "We can afford it, there are a lot of people who can't."

But it's not just about the money.

To the expenses that adaptation to the disability itself implies, these trips add numerous practical difficulties, the separation of daughters and the lack of continuity in learning.

Writing exerciseÁngel NavarreteTHE WORLD

And suddenly, resilience.

Rut, a Philosophy teacher at a high school, calmly tells how in her idle hours in bed the subject she taught has helped her. "I think of the Stoics, of assuming that in this case there is no turning back and, therefore, the only thing I can do is have the best possible attitude." Yes, she received psychological care in the hospital but right now, given the shortcomings of the public mental health system, she goes to a private psychiatrist in Valladolid.

"It is such a serious situation that, as it happens from one day to the next, I am having a hard time coming to terms with it. I still look at myself and the stumps, the scars, many wounds..., it is very difficult for me to accept myself," he says. Psychologist Aline de Mesquita cites depression, anxiety, post-traumatic stress disorder and altered body image as the most frequent problems of this type in amputee patients.

Mental health is precisely one of the new contents of the course prepared by the ANDADE delegation in Asturias.

Because it is the associations of affected people who make up for the shortcomings of the public system.

In the first course, organized with the collaboration of Fundación La Caixa, CaixaBank and the Oviedo Chamber of Commerce, physiotherapist María Atienza participated. She highlights the convenience of practicing strength work "to strengthen the muscles, especially pelvic and core muscles, which are very important in lower limb amputees"; cardio work "to improve aerobic capacity, which is diminished in any injury that leads to a reduction in physical activity"; and gait optimization work to “improve balance, tolerance to loading on the prosthetic limb, and handling dexterity.”

If in the morning Rut has exercised her new hands with occupational therapy, in the afternoon she faces, in physiotherapy, practicing with her lower prostheses. But first you have to adjust them better to the stumps.

Rafael Ortiz, orthoprosthetic technician, calibrates them to the millimeter

. One weighs just over six kilos and the other is close to four. After being amputated in July, Ruth stood up for the first time at the end of October and took the first steps of her second life. Her current struggle, keeping her legs together when walking. Each previously automated gesture represents a challenge. Before, without rushing, it took her 45 minutes to start the day. Small morning routines currently require two and a half hours of effort.

María and Rafael adjust RutÁngel Navarrete's lower prosthesesEL MUNDO

And suddenly, the other's gaze.

"When you go out on the street, people look at you a lot because you look very different, it's still hard for me not to make myself uncomfortable." There are also those who avoid looking at it. And she hurts him. She tried to get ahead and gain confidence by exposing her new life in her on Instagram. She has shown, bluntly, every difficulty. Also achievements that can inspire others.

"I have had to give a new meaning to my existence,"

explains Rut. Despite everything she has suffered, she feels useful giving visibility to amputees.

The search for his limits in this second life has led him to the limits of the Welfare State. "We must make society see that we are normal people, that we want to recover our lives with the highest quality possible to perform our functions," demands Noemí Antolín, president of ANDADE. "I have my job; if you evict me, I don't generate, I spend," she concludes.

Rut's quadruple amputation does not allow her to glimpse a future job today. Family life, at least, is being recomposed. The girls' amazement when they discover that their mother's doll rotates 360 degrees; her concern about her touch when caressing them. Her desire to go, hopefully alone, to look for them at school.

Concerns. Learnings. Uncertainties.

"I'm very worried about old age."

Hopes

. Ruth's expression lights up as she remembers what was, almost from the first day, her determination. "I have to be as autonomous as possible for them, so that they see that they have to fight. Of course, you have to cry and express your feelings, but you have to continue."

Rut finishes her intense day of exercises by walking for an hour. Preparing to overcome every hidden obstacle on the sidewalks that, suddenly, the rest of us are not even able to perceive.