Wendy Rowley, 52, continued working in retail after her diagnosis. But after moving to a different part of the UK, and struggling to find a role to suit her limitations, she has decided to stop working until she receives a transplant.

“When I was diagnosed with PAH in 2018 I lived in Wales and worked in a local home discounts store.

It was a rather physical job dealing with daily deliveries and putting stock out.  I had felt poorly for some time and looking back now I probably looked like I wasn’t pulling my weight and would have been classed as lazy.  Luckily, I only worked part time, around 20 hours a week.  However, I was so lethargic and drained at the time. 

After seeking help and getting my diagnosis I spent two weeks in hospital, followed by six months off sick from work.

I kept in contact with my employers at all times, keeping them updated on my condition, and when it was time to return to work, they were very supportive. 

We had several meetings to discuss a phased return, starting back on four hours a week and increasing gradually to 16, which would then become my new contract.  They gave me a new role as checkout operator, which meant I could sit down at the till for a shift and just serve customers. I was not expected to do anything physical at all.  The manager made sure all supervisors were aware of what I could and couldn’t do. 

During my time off sick, my partner and I had decided to move back to England to be nearer my specialist centre in Sheffield.  Also, where we lived was very rugged and rural and now with this diagnosis it was not practical to live there.

We decided on North Yorkshire as we have spent many holidays here, and it was one of our favourite places. I had planned to find a new little part time job after we had settled. 

I have always worked in retail, so decided to look at that and the hospitality trade.  Each time I found a job I wanted to apply for, as I read through the job description there was an increasing list of things I knew I wouldn’t be able to do – such as heavy lifting, daily deliveries or long hours.

I eventually found a nice job at a new cafe on a local caravan site.  It was only a small cafe, and my first thought was that at least there were not any stairs.

I was honest with the employer, telling her about my condition and trying to give her as much knowledge as I could.  She was very understanding, however it was obvious she didn’t realise how serious it was. 

On my first day I was asked to clip the wire on my Hickman line machine out of the way as it could be a hazard, and this resulted in a blockage causing the alarm to go off.

By the end of the first week I had to tell my boss I couldn’t carry on with the role.  I was so exhausted waiting on tables, walking backwards and forwards with heavy trays, and having to rush to keep up the pace.  She understood and thanked me for letting her know sooner rather than later, so she could sort out staff before the summer rush. 

I later saw the job readvertised, and the first line read: ‘Part time staff required, must be fit and well’.

Having this job, even for a short time, made me realise that I just could not do the things I used to. 

I have been on the active transplant list for three months and I have now decided to stop looking for work until the operation has taken place and I am on the road to recovery. 

I receive Personal Independence Payments (PIP) each month which just about keeps the wolf from the door.  And I am currently trying to find some light voluntary work to keep me active and to get to know people in the area. 

I hope my experiences help other people, especially at the beginning of their PH journey -which can be a very confusing time in terms of health and work and finances too.”