Joachim (34) was only 30 years old

– I never had bright die, but I’ve never been afraid of that either. I’ve worked all my life to get rid of that fear, so I don’t want to let it take over, explains Joachim Vigtel Wallentin.

When Dagbladet makes contact, the 34-year-old is admitted to the Rikshospitalet for exams. The form has been unusually poor recently.

– Right now I’m always tired. They are in very bad physical condition, worse than ever. And when my health changes, I have to notify the hospital, she says.

The day also started with the arrhythmia. Cardiac fibrillation. Since May, her heart has had to receive a small shock, an EKG, 15 times to maintain a normal heartbeat.

Half hearted

Joachim suffers from a rare congenital heart disease called hypoplastic right heart syndrome.

Put simply, the 34-year-old was born with half a heart, as the right side is underdeveloped.

Was Oslo newspaper who was the first to refer to the story of Joachim.

The condition means that the blood is not getting enough oxygen, as it is the right half of the heart that is responsible for pumping blood to the lungs.

During his first year of life he therefore had to undergo two risky operations to keep him alive: the first already when he was a newborn.

Until Joachim was nine, there was no solution. Neither operation would give him a full life, and parents had to live with the knowledge that their child could die at any moment.

– They had to endure the pain to have a child who won’t live. It must have been absolutely fantastic, says Joachim.

Limited childhood years

He himself did not allow himself to be significantly influenced by the numerous hospital visits that the disease involved.

– My family lived in Oslo, so they have always been close to me. There were no trips related to my trip to the Rikshospitalet. It contributed to normalization, she explains.

However, he is aware that his illness set limits on him during his childhood. He class trips, gymnastics lessons, outdoor games – everything related to physical activity had to be adapted so that the heart did not fail.

– I have never proposed the same conditions and, for example, I was terrified of having to run to the tram at some point.

It has always been open

Lest there be any doubts as to why Joachim should not physically exhaust himself, he and his family have been open about the condition from the start.

– Mom and Dad spent a lot of time informing teachers, parents and others when I was a kid. Everyone knew it. And if any child noticed my blue lips and asked me if I ate blueberries for lunch, I immediately replied, “No, I have a heart defect,” says the 34-year-old, chuckling.

The blue lips came from low blood oxygen levels. Joachim explains that gallows humor at first became part of the mechanism for dealing with the difficult.

During Joachim’s childhood, important advances in medical science took place and a new and revolutionary operation became available.

– It’s called operation fountain. At the time, it was an experimental treatment and many children died, but we had no other options, says Joachim.

A temporary life

It is this operation that ensured that Joachim is alive today. Unfortunately, there are many who find that the effect of such an operation has a limited duration, and Joachim is among them.

Last year he learned that he needs a new heart to live on.

Since Joachim has always lived with death at close range, he did not dare to make lasting choices for his life.

Until the end of his 20s, he somehow lived temporarily. Although Joachim always knew he was gay, he saw no reason to be open to anyone.

– I set a magical limit for how long I would live, and it was 30 years. I only made short-term choices. I didn’t want a roommate and didn’t even see the point of coming out. I would be dead soon anyway, explains Joachim.

Course changed

When his body still felt good even though it was approaching this limit, Joachim realized he was on the wrong path.

– I had to do something drastic, he observes.

He undertook a bachelor’s and master’s degree which he recently completed, told his parents that he is gay and has a partner.

Together with his girlfriend Petter Normann Dille (38), Joachim is now waiting for a life-changing phone call from the Rikshospitalet: that they have a compatible heart that can have.

The waiting time is unfortunately long.

– Doctors don’t say much about when it can happen, but in the brochures you are given it says it can take anywhere from a week, to a couple of months, to a full year. I never could have imagined that I would become one of the latter, says Joachim.

Now he has been waiting for more than a year.

He cannot travel abroad

Since the call can come at any time, the 34-year-old has received several travel restrictions. He has been banned from traveling abroad and he must report to the national hospital whenever he is more than two hours away.

The reason is that he has to be in the hospital within five hours.

– It’s a bit tiring, but it also becomes routine. If I’m going to visit Petter’s family in Namsos, which is an eleven hour drive, I have to make arrangements with AMK (Akutmedisinsk kommunikationssentral, diary) up there so that they are ready with an ambulance helicopter. There’s a bit of a hustle and bustle, one might say, Joachim says and giggles.

Joachim is happy to have Petter as a close supporter.

– Addresses my own frustrations, but addresses them in an incredibly refined way. Petter is a priest and is no stranger to talking about difficult things. Nor death, he says.

Many on the waiting list

According to The Organ Donation Foundation at any given time, about 500 people are on the waiting list for a new organ, and the number of donations and transplants has dropped significantly since 2020. Last year, the number of donations was the lowest in a decade.

One donor can save up to seven lives, and Joachim wants more people to choose to become organ donors. That’s why he chose to do it share their story through the foundation.

– I’m not addressing this just for my own good, but because there are so many people out there who are waiting for a life-saving organ. He hears of kidney patients waiting up to five years, he says thoughtfully.

He adds that it’s important to tell your closest relatives that you are, as they may still object to organ donation in the event of death.

– It will be easier for them to make that choice if they know you wanted it, he says.

– More at stake

– What is it like to wait for such an important organ as the heart?

– I think it’s good. Get me wrong correctly. Yes, the person giving it has to die, but it’s usually due to an accident – sudden death – it happens anyway and it can happen at any time. Nobody is waiting for them to give away a heart, she says.

He began to imagine what he will do with a healthy heart.

– Think of all the opportunities I’ve missed! I think I’m going on a mushroom trip. I know it’s random, but I want to try and have fun walking in the woods. Yes, just train to get back in shape! I have never been able to do this. My best shape has always been a donkey. I think it will be strange to see improvement, she says gently.

Although she has chosen to live a more meaningful and long-term life, she is still not afraid of dying. However, the thinking has changed slightly.

– I was more indifferent before. Now there is more at stake, says Joachim.