Studying with PH

What I learned from studying with PH

Emma Ferguson has recently achieved a first-class honours degree in English Literature - and her time as a student taught her invaluable lessons about managing her PH too. Here, she reflects on the last three years as an undergraduate. >>>

What I learned from studying with PH

On my sixteenth birthday I received a diagnosis of idiopathic pulmonary arterial hypertension from a team at Great Ormond Street Hospital. I was already being treated for a congenital heart condition discovered when I was ten, but the two conditions were not viewed as related.

My PH has posed issues throughout my education due to symptoms like tiredness, my greater risk of infection and missed school for hospital appointments. When it came to applying to universities, I set criteria such as low air pollution levels and accommodation on campus to ensure I could manage my condition as best as possible. The University of Leeds came out on top and in October 2018 I began my studies there.

Adjusting to student life

The life of an English Literature undergraduate is a very unstructured thing. In my first year I had eight contact hours a week which was reduced to seven in my second year and became a whopping ten in my final year.

This structure suited managing my condition perfectly, as the rest of my time (when I was supposed to be completing independent study) was very flexible and allowed me to take rest when I needed it.

The necessity of eking out my student loan to cover my costs meant that I walked everywhere and by the end of my first year, I was probably the fittest I have ever been. The toughest weekly task for me was carrying my food shopping for the 25-minute walk back to my house, but this was still doable with rest breaks.

If I had my time again though, I would order my food online and have it delivered, which is what I did this year while shielding.

My first year enhanced a lot of skills for me such as good time management. I learnt very early on that the pulling all-nighters routine favoured by many students when writing essays wasn’t possible for me. My condition meant that good planning and daily work

Just before starting my first year of uni

was the best way to manage deadlines.

Societies such as the student newspaper also allowed me to write about my health and hidden disability while also helping me build a portfolio for my future career.

Shouldering the costs

My first year also taught me a lot about the additional costs shouldered by disabled people. Throughout my degree I had out-patients’ appointments with my specialist and this sometimes fell in the holidays and sometimes during term time. This necessitated flying back home to Belfast and catching up on missed work upon my return. The other costs associated with my PH were paying for prescriptions (something which doesn’t exist in Northern Ireland) and paying for other things like taxis to my GP’s office, or food delivery when I was too unwell to get those things on foot.

While services like Student Finance’s Disabled Students’ Allowance (DSA) do exist, in my experience, they funded study aids like laptops and printers rather than subsidising travel costs or other medical expenses.

Other services such as the disability services team at my university were usually helpful in advocating for me and they produced a report on reasonable adjustments for me every semester - which included accommodations such as leniency if I had to miss seminars and lectures. The challenges of my second year

My second year at university taught me a lot about how variable my PH can be. After a healthy first year, I didn’t sufficiently prepare for managing my condition in my second year.

Most students move into cheaper, private accommodation in their second and third years and I wanted to do likewise. It’s important to note that many universities like the University of Leeds do allow disabled students to retain their first-year accommodation for the duration of their degree if they apply to do so, and this is an option that in hindsight I should have taken.

Instead, I lived with friends in a flat a 25-minute walk away from campus. This walk, while not necessarily an issue on its own, when coupled with a series of unfortunate circumstances meant that I became quite ill.

The period of 2019-2020 in Leeds was extremely wet and the constant rain,

With friends before our First Year Ball

coupled with the longer walk to campus, meant that I regularly had colds which stuck with me. In January 2020 I went under with a bad virus which stuck with me for five months.

Three courses of antibiotics and a steroid nasal spray later, I did recover but it was a long slog. The personal responsibility of cooking, shopping and generally looking after myself - while still attending lectures and doing coursework - meant that I never had a proper opportunity to stop and focus on getting better, which probably prolonged my illness.

The lockdown measures in March 2020 came into place two weeks after my mum had demanded that I come home due to her fears about the virus preventing me from travelling home. I was very fortunate that I was able to come home and be looked after while finishing my second year.

Understanding my limits

My health issues have created in me a drive to do everything when I am well. This drive, however, can also prolong illness and create over-tiredness. After my healthy first year, where I had held down a part-time job alongside my studies and completed a sponsored run (at a walking pace) I had become overconfident about how much I could do.

For my second year I had signed up to do too much. These had been great opportunities and were doable when I was well but when I got sick, they became a burden that was very hard to shift. Heading into my third year, I shed a lot of responsibilities and limited the number of extracurricular activities I took on to prevent a repeat of my second year.

My final year was entirely online due to COVID-19. This presented new challenges but from a PH perspective the online working conditions were helpful. I had unfortunately signed for a flat for my final year before it was announced that teaching would take place online, but I mostly lived at home.

It has been interesting to see how the university plans to retain measures such as online teaching in the future and I’m pleased that this means more options for disabled students going forward. As I’ve begun to apply for jobs, I have also seen more remote positions being offered, and flexible working options, which I find encouraging.

Looking ahead

In July, I graduated from the University of Leeds with a first class (hons) degree in English Literature. It has been a long process, made tougher to navigate at times due to my PH, but also something that I have found very rewarding.

As I move onto the next step, I feel that navigating studying and getting through the pandemic have prepared me for the future and the issues that can and do arise from my condition.

The biggest takeaway that I have is that preparation and mindfulness of your limits are the most useful things you can do to manage PH in a full-time study environment.

< Attending an art exhibition in my first year of uni

Celebrating the completion of my final year dissertation

It all started in December 2019, when I was leading a walk in the Peak District and found myself really breathless and quite unable to climb up a hill. We had always done a lot of walking, including walking holidays abroad, and so this was quite a shock.

I saw a GP several times, but it wasn’t terribly conclusive - and in retrospect, I understand how difficult PH can be to identify.

In March 2020, I had a violent reaction to some medication I’d been put on and ended up in the emergency department of my local hospital, where I was seen by cardiologists who prescribed a different medication. After several months and various tests, it was obvious that I was getting worse and I was referred to the specialist centre at the Royal Hallamshire in Sheffield.

I went for what I thought would be a day visit, but after multiple tests I ended up staying there for nine days. I was given a diagnosis of CTEPH and told I might be a candidate for a pulmonary endarterectomy (PEA). I clearly remember the consultant making a sketch of the details of the operation - which I still have - and my initial reaction was ‘I don’t think I like the idea of that’. I was discharged to consider my options.

Royal Papworth [the only hospital that performs the PEA operation]

Walkingon

At 82, Malcolm Fordyce from Derbyshire had a lot to consider when he was offered a pulmonary endarterectomy following a diagnosis of Chronic rang me very quickly and an appointment was made to meet the

Thromboembolic Pulmonary Hypertension (CTEPH). Ten weeks after his surgery, he spoke to surgeon, Mr Jenkins, on New Year’s Eve. I was told that I wouldn’t need to make a decision at this meeting, but that I us about the journey. could go home and discuss it with my family. I was sent lots of information about all aspects of the operation and had a long telephone call with one of the PEA nurses which was extremely helpful. I was told that I should phone them at any time if I had any questions. I was very much in two minds at first. I felt I would be going into a completely unknown situation and a big concern was how I might feel when I came through it. I had only been in hospital once in my life, in 1957, and I had never had a general anaesthetic. Making a decision I discussed it at length with my wife, Sue and our two daughters. They had concerns and lots of questions, but they could see that I was struggling more and more with my breathing and definitely getting worse. Eventually, we decided that if Mr Jenkins told me I was a candidate for surgery, I would say yes there and then as I didn’t want to waste any more time. There was a sense of relief that the decision had been made. Malcolm one month after his operation, May 2021

Malcolm on his 80th birthday in 2018 Malcolm & Sue on the summit of Canigou in the Pyrenees

“...listen very carefully to everything you are told”

We left at 5am on a frozen morning to get down to Cambridge. Before meeting Mr Jenkins, my wife and I had an hour’s session with another PEA nurse which was very useful and encouraging. Then we had a long chat with Mr Jenkins. The risks of the operation were made very clear. But he said that treatment with medication was not an option and without the operation my future would be a slow degeneration. At some point, it would culminate in heart failure.

I said that I definitely wanted to go ahead with the operation, but because of the COVID-19 situation at the time it was not possible to schedule a date. It was a case of waiting.

The waiting seemed long but, eventually, in mid-March, I had a call inviting me for surgery the following month. I was really pleased that things were moving ahead. Looking to the future

The operation was a success and cleared the blood clots. I was sent a photograph of what was taken out and it looked very strange, a lot like scrambled egg.

Nobody knows why I had the clots, but I feel very fortunate to have reached 82 without health problems and I also feel very fortunate that I am able to recover from this.

It will be six months before I am fully recovered, and my aim then is to get back to walking reasonable distances. My days of going up mountains are just memories now, as I certainly understand that one must be very careful about not pushing the body too much - but I would like to get back to walks of at least five miles.

At the moment, I am feeling so much better and just to be able to get up and walk into the garden or do circuits around the village is a pleasure. My quality of life is considerably better now, even after only ten weeks.

My advice to someone else facing the same decision about surgery is to listen very carefully to everything you are told and take your time to weigh it up.

These last months have been an extraordinary journey and have given me a much greater appreciation of how fortunate we are to have the NHS. Amid the pressures and problems of COVID-19, the care that I was given by all the staff, in many different roles, was outstanding - and I am so grateful.

I would especially wish to thank Mr David Jenkins and his team at the Royal Papworth and Dr Robin Condliffe at the Royal Hallamshire. Malcolm’s wife Sue has supported him through diagnosis, surgery, and his ongoing recovery. The couple have been married for 57 years and she helped him come to a decision about the procedure.

“Neither of us were sure about the operation at first. But we could see things were getting worse for Malcolm. He doesn’t like hospitals, even visiting others there, so the thought of having a major operation was quite daunting. But by the time we went to see Mr Jenkins, Malcolm had definitely made up his mind. After a year of not being able to do very much, and knowing he was getting worse, there was really no choice. I had watched Mr Jenkins perform a PEA on a television documentary [‘Surgeons: At the Edge of Life’ shown on the BBC last October]. It helped me hugely to see him in action on the programme and I remember being terribly impressed by his calmness. I just felt that he was somebody we could trust completely. I tried really hard not to think about the risks and to be positive on the day of his surgery, but it was a huge relief that evening to hear a nurse from Papworth telling me it had been successful and he was fine. Nine days later he came home. The operation was a huge blessing as I can see Malcolm getting better day by day, and as his carer, I’m not having to do so much for him. He was never a cook though, so I don’t expect that will change! We are very much looking forward to being able to do lots of walking again as it’s something we have always done together.”

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