More than medical care

For Chermaine Kwant, who holds a PhD on quality of life in pulmonary arterial hypertension (PAH), good care is about more than medical outcomes. According to her, nutrition, lifestyle, and personal control contribute to recovery and daily functioning. "I think there are still major gains to be made in that area in the consulting room."

It has been fifteen years now. That was when Chermaine was told she had at most a year left to live, due to pulmonary arterial hypertension: PAH. 'A fatal disease with high blood pressure in the lungs, which would cause my heart to fail. I was twenty-five back then.'

Taking charge

It was the beginning of a long and painful journey. Chermaine was treated at Amsterdam UMC by Professor Anton Vonk Noordegraaf. "I am a dietitian and asked him what was known about nutrition and lifestyle in PAH. 'Research on that has never been done, so we have no data on it,' he said to my surprise."

"As a patient, I wanted to take control. Nutrition and lifestyle are factors you can influence yourself. But during my treatment, the focus was mostly functional, looking at heart values and walking tests. There was less attention given to my daily functioning and how I felt." Because of the severity of her condition, she was facing a double lung transplant. "To me, that felt like giving up. So I went into complete denial and did everything in my power to postpone that transplant by living extremely healthily."

Enemas and parsley diet

Isn't it a bit cliché, that healthy eating and lots of exercise, in short, that whole lifestyle story? We already know that, don't we? Chermaine: 'Practitioners generally still do little with lifestyle and nutrition. I think there are still major gains to be made in the consulting room in that area. I was my own biggest experiment. At first I did strange things too, from colon enemas to a parsley diet. But in the end it was simply: back to basics: good fats, lots of protein and vegetables, and above all fewer processed products, packets and pre-made mixes.'

Her practitioner saw the positive effect. ‘He didn’t understand it at all and said: “In your situation, you should be lying in bed all day. But you are energetic, and you just work and travel. That’s simply impossible.”’ But it was possible. ‘With healthy food, you influence the microbiome, the bacteria and viruses in your gut. They are connected to your immune system and your brain. It largely determines your health and how you feel. Good nutrition makes you stronger.’ Practitioner Vonk Noordegraaf saw it and was impressed. After many conversations with Chermaine, he asked if she wanted to do PhD research on the subject. She did.

Guiding women

According to Chermaine, anyone can get better. 'But that is something different than being cured.' The three elements of nutrition, lifestyle, and self-management together form the key to getting 'better', she believes. Today, as Dr. Rebel—who has since earned her PhD—she helps women with chronic and complex conditions in the Netherlands and Belgium with this. 'I focus on women because care and research regarding them are vastly underrepresented.'

According to Chermaine, the credo 'everyone can improve' brings about a fundamental shift in mindset. To be clear: she does not mean by this that every disease can be cured. 'But you can make an improvement in how you relate to your situation. You start looking at your illness differently.' Combined with lifestyle, that forms the basis of her coaching for women with chronic conditions.

Two days blind

She also brings her own experience. Such as her insight to be 'selfish' and put herself first. Especially after the lung transplant. 'When it turned out I could no longer avoid the transplant, I was grateful that I received donor lungs so quickly. But that was followed by six excruciating weeks on a ventilator in the ICU.' The low point of her illness, according to Chermaine. 'During that time I went into cardiac arrest, sometimes fumbled with the bedpan 20 times an hour because my bowels were upset. I suddenly went blind for two days. It didn't stop. There were super sweet nurses, but I also felt a lot of frustration. For instance, I indicated that my body was not reacting well to the tube feeding. A doctor responded to that: "Well, the packaging really doesn't say anything that you can't tolerate." Then I angrily typed on my phone - the only way I could communicate - that we should stick to our own professions, and that I wanted to speak to the supervisor. The tube feeding was stopped and I recovered.'

To become more resilient

That self-direction is also what she focuses on in her patient guidance. For example, it is rewarding when patients start working on themselves even before transplantation, she believes. Taking control also involves becoming more resilient, Chermaine thinks. "If doctors don't ask how you are feeling and what you want, you have to dare to say that yourself. And ask if there are alternatives to the treatment, for instance. That generates appreciation."

Talking to your donor

All in all, according to Chermaine, when it comes to chronic illnesses, it’s about setting boundaries, guarding your energy, and choosing yourself without apologizing for it. ‘I no longer do anything against my will. I now know that because of this, despite my illness, I can be a better sister and friend. I also view taking good care of yourself as a tribute to your donor. My lungs belong to someone else, but they are part of me now. It might sound strange, but I talk “to” my donor almost every day. I certainly do that every year when I celebrate my donor anniversary. That is how I donate my gratitude.’

This article is from Transparant magazine (no. 98).
Curious for more stories and background? Read the full magazine here.