Jo’s story

Jo, 42, lives in Wrexham in North Wales. She has Chronic Thromboembolic Pulmonary Hypertension (CTEPH) and has been receiving ‘prehabilitation’ support in preparation for an upcoming pulmonary endarterectomy.

“I had been desperate for help with exercise and weight loss, but I didn’t know what was available. It was when I was discussing the operation with my consultant that we talked about ‘prehab’, and I was connected to Carol Keen, which has been really helpful.

Initially I was diagnosed with CTEPH back in 2016 when I was living in the US, but then there were lots of complications when I moved back to the UK, so it was in 2018 when I was diagnosed again at Sheffield.

I was very fit and active before I got ill. I played squash and tennis, went hiking, and I used to do intense home workouts. Physical activity was very much part of my ‘normal life’.

I went from doing things like that to having near-fatal pulmonary embolisms. So, I went from being really active to becoming out of breath simply from getting dressed.

At the time of my embolisms, CTEPH hadn’t been diagnosed so I wasn’t aware it was a chronic condition. And in my recovery [from the embolisms], I prioritised work, so I maxed out my energy with work or family commitments.

A few years on, I realised I had no space anywhere for activity, taking care of myself, recovering my physical capability, or eating well.

Learning to do the ‘right’ things

At this point, I started creating my own, far too rigorous exercise programmes. I got really frustrated with it because I was hating every minute of what I was trying to do, and I was even more tired than I needed to be.

That’s where I was at when I started talking to Carol. She listened to who I was before I got sick and what worked for me for exercise back then. She helped me come up with some ideas, such as apps that might work for my need for competition, but that wouldn’t be so strict that they wouldn’t allow for bad days.

I’ve been doing a lot of walking, as well as Pilates – which I’ve accessed via the NHS website during lockdown as they have programmes for people with specific conditions.

I have a tendency to be hard on myself, but Carol has helped me re-prioritise in terms of exercise and food balance, as weight loss is a goal too. She gave me healthy eating resources which have really helped.

From our initial conversations, she was able to understand what would help me and gave me ideas. It’s been really helpful to have her structuring the journey, for example how often I weigh myself, and when we should have progression check-ins [so I’m not being too hard on myself].

If you have people around you, like a spouse and / or children, they can help with that – but when you’re single, you don’t get that support, encouragement or ‘voice of reason’.

Carol has given me confidence. I’ve done a lot of my own research but that can be overwhelming; sometimes you just want someone who is a professional to tell you what to do. It gave me more confidence in what I was doing, that I had had a conversation with a healthcare professional as well.

She helped me understand what level of breathlessness is ok, and how tired I should be. It’s easy to panic with breathlessness when you have PH.

“Carol’s influence has helped those around me too”

For my relatives and friends, knowing I have talked to a [rehab] professional has helped give them confidence in my decision-making about my own body, and legitimised my choice to prioritise it as well.

Sometimes, they think I push myself too much. They want to protect me, so they panic at the slightest hint of me being breathless. They want to take my shopping off me or tell me to use the lift instead of the stairs.

Now, because they know I have had expert input, they feel more confident and reassured by my decisions.

It has legitimised my own decisions too. Sometimes I may say I can’t go for dinner, or similar, because I want to do some meal prepping, or a big food shop, or to go for a walk. And because I have had a conversation with a healthcare professional about the importance of exercise and nutrition – alongside blood tests, medications, and injections – family and friends are now more willing to back off a bit when I draw that boundary.

When you put something out there that’s from your healthcare team, it’s easier for them to accept that.

The link between physical activity and income

There is something else I think it’s important to consider when it comes to being able to access specialist physio.

My income took a massive hit when my health meant I couldn’t work 80-hour weeks anymore, with two jobs. That meant that gym memberships, and bus passes to be able to get there, were not an option anymore.

Previously, I would have been able to go to some classes at the gym or book some sessions with a personal trainer so I could get a personal programme [to suit me].

But that has just stopped being an option now. Having a chronic condition means I have more of a need for input [to help me exercise], but less ability to pay for it.

The frustration I was feeling [before working with Carol] was making me feel more ill. I had unrealistic goals, and the wrong focus.

The difference that ‘prehab’ is making

I’m managing my energy levels better now because I’m not doing that whole ‘crash and burn’ thing, so I have more consistent energy. And I’m incorporating movement more regularly because I’m not peaking and troughing from pushing myself too hard. It’s become a more consistent part of my week and my day.

I feel like I now have ‘permission’ to prioritise physical activity, which makes a difference because I don’t feel I’m trying to fit too much in.

I am gradually managing to lose some weight and the resources Carol has provided have helped me think differently about food.

Carol took the time to listen not only to where I’m at now, but who I was before – and that is important to me because I am more than this condition. Feeling understood made a big difference.

It has really helped that I feel there is somewhere I can ask questions about exercise, so it doesn’t feel overwhelming.

I feel I can now approach my health more holistically, which is something I would choose as a patient.

When I was diagnosed in the States, my hematologist was based at a cancer centre and when I walked in, I’d see offices for a dietician, a physio, a massage therapist and an occupational therapist – they have this whole team of holistic practitioners there.

The fact they have a base in that centre, immediately tells me as a patient that food, exercise, and your other life choices, are an important part of your care. Just having that visual, that optic, sends a really important message to patients.

I had brought that expectation with me [back to the UK] where I thought I could be doing those things for myself, where I’m not fully dependent on medication, and that I could maximise what my life looks like if I took care of those things.

Engaging in physical activity and looking after my nutrition has enabled me to have more control [over my health] and do things every day to work towards a fuller life. It doesn’t feel like that if the only thing you are doing is taking medication and going for blood tests.

Preparing for my operation

Obviously, the fitter you are going into a big surgery, the better your recovery is likely to go. I feel like if I can get some weight off and be a bit fitter before my pulmonary endarterectomy, I can expect a better outcome than if I just sit round watching Netflix and eating junk food.

I feel like recovery will be better too. For example, with the Pilates I’m working on core strength, and I know that after surgery I won’t be able to use my arms to push up out of a chair because of the incision.

So, I feel what I am doing now will empower me to do more after the surgery, and to be more independent. I also hope there will be less risks; for example, my balance should be better, and my core strength should be better, so I should be getting back to being more active more quickly.

At the very least I want to be able to do things like get myself out of bed and to the bathroom. It will help me be more independent more quickly.

A different perspective

I think my experience of living in countries with different healthcare systems has helped my perspective [on taking control of my physical wellbeing]. I’ve lived in developing nations where there is nothing, and in Canada and the US where there is insurance but no NHS.

In Canada, your ‘state healthcare’ will cover you for things like sports massage, or holistic care where you are participating more. In America, as a patient, you have to take responsibility for everything as there aren’t those conversations between healthcare providers and it’s all crazily expensive. It’s cheaper to look at nutrition and exercise than it is to look at pharmaceuticals.

It all changed my perspective, so when I moved back to the UK, I wasn’t just thinking about what the consultant was going to prescribe me, or what procedure they were going to do; I had the mindset of looking outside of that box and wanting something else. And that’s where the specialist physio support has made such a difference.”