Straight after their honeymoon, newlyweds Julie Castin Cordeiro, 33, and Sandro Gabriel da Silva Cordeiro, 33, had their whole lives turned upside down.
Julie, a PhD student at the Evangelisch Theologische Faculty in the Netherlands, originally from Florida, noticed that Gabriel’s heartbeat would race uncontrollably at night.
When she’d asked him about it in the morning, Gabriel, 33, didn’t think much of it, but just shy of three months into their marriage, they went to get him checked out.
Gabriel was diagnosed with left ventricle cardiomyopathy – a heart muscle disease caused by a change in a person’s genetic make-up.
The condition meant Gabriel things like standing up quickly would make him pass out.
If he walks too much, lifts a box, or bends down too often, he ends up getting ill and has to spend days in bed.
Gabriel can sometimes spend weeks trying to recover from a small trip where he had to drive. He is unable to do any heavy activity and had to quit his job.
The diagnosis was completely life-changing and dealing with it has been difficult for both Gabriel and Julie.
Julie told Metro.co.uk: ‘The hardest part was it is rare! We didn’t know what to do.
‘I saw a vibrant young man (27 at that time) deteriorating in front of my eyes. He felt humiliated at work, he had no perspective of what to do next, I had zero income (I was new to the country), and the medication was horrible, plain horrible.
‘He couldn’t ride his bike to the corner without feeling ill. I remember on one occasion I told the doctor that my husband was a zombie and better dead than living like that.
‘Obviously, it took a toll on our marriage because I didn’t understand his condition. No money meant we had nothing to do, to buy, to go out.’
For Gabriel, it was the aftermath of losing his job and struggling financially that was the hardest thing for him.
As they live in the Netherlands, healthcare is not completely free adding to their money struggles.
Gabriel added: ‘In the beginning, it was very hard, I was always tired and I didn’t know what was happening. I would sleep for the whole day and never feel rested.
Julie and Gabriel's expenses
In the Netherlands, they have to pay basic insurance monthly which costs around €120 (£101.95) per person.
But if you need to go to a specialist, get medicine, have an ultrasound, for example, anything beyond a visit to the GP you need to pay your ‘own risk’ which amounts to €385 (£327) per year.
Julie and Gabriel pay twice for each one.
The financial burden falls on Julie as the breadwinner, on a salary of €1500 (£1274) monthly (without tax).
Then there is rent and other bills and Julie tells Metro.co.uk that last year they paid €600 (£509.63) for the city taxes.
Other healthcare needs such as vitamins and supplements are not covered in their insurance as well as transportation to appointments.
‘After the diagnosis, I was still quite in shock, but it was the aftermath that was harder. Losing my job, not being able to provide, not finding a job, all made me very depressed.
‘As a young man, I would go to the hospital and be the only young person in the cardiology section. Not knowing what is next makes me anxious about the future.’
In the end, to afford the medicines and round-the-clock care, the couple had to move in with Gabriel’s parents, something that they felt was humiliating in the first year of married life.
‘Financially you are never prepared for a serious illness,’ Julie explained.
‘When you get married and vow to be committed whether rich or poor, healthy or not; you don’t expect that to happen so soon.’
For the first couple of years of his treatment, Gabriel spent most of the time at home, sick and bed-bound. He now takes medication that is helping his heart work better, but the side effects mean that he often feels weak and dizzy.
Eventually, they moved to a place on a one-year contract as it was set to be demolished. When they were evicted, they spent a day being homeless, before they were luckily allocated alternative accommodation.
‘I confess I was not as supportive as I should have been,’ added Julie.
‘The vows you take when you get married seems more like a formality. I was not prepared to live “the sickness and in poverty,” already in the first year of my marriage.’
Now, five years into their marriage, their situation is more stable.
They live in a small old apartment together and in 2017, Gabriel decided to give up welfare benefits to return to work again at a warehouse, as he wanted to relieve Julie of some of the financial burden.
His employer is aware of his condition and tries to work with him but he has to often ask for help lifting things.
He added: ‘Even though they know my condition, I still do things I am not supposed to, but I feel the need to provide for my family.
‘It is not easy to keep asking for help to carry a box or lift something that will cause my heart to suffer. So I just do it and suffer later.
‘I believe nowadays I am in a much better place than before, but the lack of support and help for young heart patients is sad. I just wish they would help us have a sustainable life.’
Both are unsatisfied with the Dutch government at the lack of help available to them.
‘They give you tiny welfare and no opportunities to go to study in another field or even finance to buy a place,’ continued Julie.
‘It infuriates me how they would rather see us homeless (we cried out for help so many times!) than offer any incentive.
‘We are honest people who just had a very rough and unfortunate time.’
There is no cure for Gabriel’s condition but he is doing better now because of the treatment.
Julie added: ‘In our current situation, we are happy.’
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source https://metro.co.uk/2019/12/19/womans-husband-became-a-zombie-after-heart-condition-diagnosis-months-into-marriage-11926707/
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