Hope for the Hybrid Heart

A research team in the Netherlands aims to create a soft robotic heart that could improve quality of life for people with PH - and save lives from heart failure.

The project is led by Dr Jolanda Kluin, a cardiothoracic surgeon based in Amsterdam, and the team are hoping the innovation will provide a much-needed solution for heart failure.

The ‘Hybrid Heart’ will consist of a soft robotic shell, artificial muscles and sensors to enable natural motion. Tissue-engineered lining will make sure all surfaces in contact with blood are safe and energy transfer (electricity) will be transferred wirelessly from a close power source worn in the patient’s clothing.

Dr Kluin had already carried out extensive work around tissue engineering, researching whether cells from the patient could be used to create artificial heart valves. And the inspiration for the Hybrid Heart came from, of all things, a newspaper article about a soft robotic octopus.

After finding out more and making contact with its creator, Dr Kluin saw potential that, with some adjustments, the same engineering could be used to create a heart.

She said: “We don’t know exactly what it will look like, but the most important thing is that the pumping power comes from the soft robot technology. By using soft materials, we hope that patients will

Dr Yolanda Kluin

take no or only light blood thinners. This is completely new, but I am convinced that the implantation will work.”

Heart transplant remains the best treatment for people with heart failure, but there is a shortage of donor hearts - especially for children. And PH patients require new lungs at the same time because in an average donor heart, the right ventricle is too weak to pump against the pressures caused by PH.

Unlike a human heart, the right side of the Hybrid Heart could be tailored to deal with these pressures, negating the need for a simultaneous lung transplant.

As well as saving lives, it is hoped the Hybrid Heart will improve quality of life too.

Currently, some people with heart failure are treated with a Left Ventricular Assist Device (LVAD), which is like an artificial heart pump.

This can cause complications such as bleeding and embolism and requires constant connection to an electrical wire. The Hybrid Heart, on the other hand, uses a wireless connection - with the power source hidden in a patient’s clothing.

“The LVAD has saved many lives, but the quality of life is still relatively low”, said Dr Kluin. “You can’t just take a shower, for example. We are hoping that with the Hybrid Heart, patients will be able to do without the power source for a while, so they can have a shower, or go for a swim.

“In people with PH, the Hybrid Heart will help more blood flow through the lungs because of the stronger right ventricle. So, although it won’t stop the disease, it will certainly improve quality of life.”

The Hybrid Heart has been shortlisted with three others for up to £30m of funding from the British Heart Foundation, as part of the charity’s Big Beat Challenge – a global competition for scientists to compete for research awards. The winner will be announced later this year and if the project is successful, Dr Kluin believes the first soft robotic heart could be implanted in a patient by 2029. .

Your thoughts on the Hybrid Heart

To help them with their Big Beat Challenge funding bid, the team behind the Hybrid Heart enlisted the help of the PHA UK to find out what the British pulmonary hypertension community think of the innovation. A survey conducted in May attracted 199 responses and showed 100% of people think its potential development is important or very important. 99% said they were interested or very interested in the project.

Comments included:

“This sounds like the most important development in terms of benefit to PH sufferers that I’ve heard of to date.”

“The future has always talked about artificial hearts being a real thing. This could make the fiction become reality. If you never push forward, you will only fall back.”

“As a PH patient who also has uncorrected congenital heart defects, this sounds as if it could be life changing.”

“It’s so scary to think that my heart could fail. I’d take this hybrid heart tomorrow if I could.”

You can find the full results of the survey at www.phauk.org

Find out more about the Hybrid Heart at www.hybridheart.eu and look out for an update in the next issue of Emphasis. Find out more about the Big Beat Challenge at www.bhf.org.uk/bigbeatchallenge

My marathon myway

Despite 24/7 oxygen and two serious diseases, PHA UK member Juliet Coffer is determined to live each day to the full.

After discovering the benefits of moving more at home, Juliet decided to revisit her dream of taking on a marathon by completing her own version instead - covering 3km across the 30 days of April, all without leaving her living room. Juliet spoke to us halfway through her challenge; reflecting on her motivations, her achievements, and why she refuses to ever give up.

My pulmonary hypertension is a result of sarcoidosis – which occurs when inflammatory cells clump together to form ‘granulomas’. In my case they are around my lungs, which led to the PH diagnosis about ten years ago.

Both diseases are progressive and I’m continually deteriorating, but I want to continue to live life, not wait to die. There’s a big difference.

I’m on oxygen therapy 24 hours a day and am housebound; partly because being tied to the machine makes it hard to go out (a few hours requires six or seven canisters) and partly because I’m still shielding due to the pandemic.

It’s been a long time now. I actually decided in October 2019 that I wouldn’t go out for the winter, because I’d had such bad chest infections the year before. And then the COVID-19 lockdown began.

I work as an IT coach and website manager, and both jobs are easy to do from home, so aside from a couple of medical appointments, I haven’t been out for 18 months.

Moving more

During a recent consultation with my PH team, we discussed the possibility that some of my problems were down to my muscles being so weak due to not moving much, so I was referred to the physiotherapist, Katie, attached to my specialist centre.

I spoke to Katie on the phone, and that’s how my big walking challenge began.

At this point, I was barely moving as being on the oxygen and having limited lung capacity makes things very difficult. Simply bending over takes the oxygen out of my lungs. Everything I do has to be planned and the process of having a shower takes me two hours from start to finish.

It can take me a couple of hours of sitting on the bed when I wake before my body has the strength to move. And if I make a meal, I have a controlled plan that enables me to move methodically along the kitchen without having to go back and forth.

I spend most of the day sitting at the computer, and do a few hours of work before a nap, and then a few more. So, we were pretty much starting from nothing.

Katie suggested to start slowly and work within my limits. She sent me through a document about breathing and the breathlessness scale so I could keep a check on that, and suggested I do small amounts a few times a day – things like standing up out of a chair and sitting back down again or walking on the spot to get my ankles moving.

It was a case of building things up slowly and I was surprised at how much I could do, once I started.

“I was surprised at how much I could do, once I started”

Taking it to the next level

Shortly after my chat with Katie, I found out that April was Sarcoidosis Awareness Month, and supporters were being encouraged to take on a ‘warrior walk’ – covering 100 miles in a month.

It sparked something in me, and I started to think how I might be able to take on my own challenge. I decided to scale it right back to suit my limitations and chose to do 3000 metres (3km) over the 30 days of April instead. It was absolutely Katie’s intervention that gave me the confidence to decide to do this.

I have wanted to run a marathon since the 80’s, and used to get up early every year on a Sunday morning in April to watch the wonderful, enthusiastic runners in the London Marathon.

Getting diagnosed with sarcoidosis and then PH put paid to my marathon dream, but after I started doing some exercise at home, I decided that dreams still can come true.

To most people, 3km in a month probably doesn’t seem very far, even verging on the ridiculous – but not for me.

To help me decide on the distance, I did some trials. I walked 100 metres on one day, and doubled it to 200 the next. I got over-excited and tried 300 the following day but it made me really ill, and I was ordered by the doctor to go to bed and rest for a few days.

It was too much, too soon, so we decided 100 metres a day would be manageable.

My oxygen machine lives in the lounge, which is five metres in length, so I’ve been walking from one end to the other and counting the laps. I have rests in-between and keep an eye on my oxygen levels and pulse; I don’t worry about how long it takes me.

Enjoying the benefits and looking to the future

Moving more has made me feel much more positive. Not leaving the house means it’s easy for me not to push myself and I could have carried on like that forever. But I feel so much better for actually doing something.

I have a stance that I wake up and every day is a new day to get on with. I don’t want to be someone who sits in a chair staring at a TV forever. I don’t want to become that person.

Physically, the walking has helped me feel more movement in my limbs and without tempting fate, my lungs and breathing feel better. Plus, I’m hungry for the first time in a year which is great. Because I’m moving, everything seems to work a bit better. If nothing else, doing a little bit of exercise each day just makes everything feel a bit more positive.

I’m well aware that you need to help yourself to keep going and for me, the exercise is part of that.

I will continue to walk after the challenge, and to keep motivated I plan to log each lap I complete. I like to use old-fashioned gate charts on a piece of paper.

I will also set an alarm so that I get up from my computer every hour, and set myself targets each day. It’s important to have a plan of what you are going to do.

My motivation for the walking challenge was to raise money and to help people, and I want to continue that help in whatever way I can. For example, I’ve joined the patient group for our local GP surgery because I want to make things better for those using it with long-term chronic conditions.

You’ve got to have a purpose for living. I was told my conditions can’t be treated anymore, but I don’t want to be a victim.

My life is different from everybody else’s but I make the most of it. I don’t see myself as brave, courageous and inspiring, I just see myself as living life in my own way. And if I can leave the world in a better place, then I have achieved something good.

“Because I’m moving, everything seems to work a bit better”

We’re delighted to report that Juliet completed her challenge and at the time of going to print, she has raised £15,765 for Sarcoidosis UK, including match funding from the British Lung Foundation. You can visit her Just Giving page at justgiving.com/ fundraising/julietcoffer