When Alex Charlesworth married her husband Sean she celebrated the biggest day of her life five years after finding out she had pulmonary hypertension. These are her reflections.

Written in Spring 2024

When you are diagnosed with PAH at 29, you soon realise that you will have to navigate life events with a chronic condition. Sean and I had been together for ten years when he finally proposed, so it was hardly a surprise, but I knew there were some obstacles I would have to smash.

Finding ‘The Dress’ with an IV pump

After we had put a date in the diary and had booked a lot of the main suppliers, it was time to find the dress! I was so excited about this part, and I was not going to let the pump for my IV medication get in the way.

I wear shorts under dresses all the time, so this was not going to be any different. For those wondering, I get yoga shorts with pockets from Amazon, and they do loads of colours. I just got nude so that they wouldn’t be seen under the dress.

I knew that I didn’t want anything too fitted anyway because I wanted to be able to dance in the evening without being restricted. Therefore, finding something that would hide the pump wouldn’t be an issue.

Having had the line and the pump for five years, I have gone beyond the point of caring if people can see the line, but I wanted it to be invisible for this one day! This meant that the straps were important.

I had the line repaired in 2022 so it is longer than it used to be. Usually, I loop the line under the dressing. However, to hide it better, I changed the dressing the night before and made the line go straight down. This also meant that there were no tatty edges to the dressing either.

The dress I chose was the first one I tried on. When people say, ‘you just know’, they are definitely correct.

Logistics on the day

Luckily, I am stable and otherwise quite fit, so I knew that I would be ok on the day energy-wise. However, the date we chose meant that I had the week off before to prepare, and the week after to recover. I am a primary school teacher, and our date was in the middle of the Easter holidays.

I always take my tablets at 10am and have an alarm on my watch. I was not wearing my watch on the day, so I got my sister to set an alarm so that I would remember to take them in the chaos of getting ready.

Those of you on the pump know that it comes with certain logistical needs. I usually change the pump over between 7 and 7.30pm, but I didn’t want the day interrupted by pump-changing.  Also, the dress had many layers so it would have been tricky to do anyway.

I decided to change the pump over when I got into my dress at about 1pm. This worked out perfectly. However, it did mean that I had to leave the change-over to the last minute in the following days to get back to my normal time.

Hopes for our honeymoon

As everyone with PH knows, flying can be a problem. Due to all my usual test results, I didn’t need a fit to fly test to fly short haul. My team were happy to just write me a letter explaining why I had the meds, all the bits for the IV and why I couldn’t disconnect from the pump to go through security. I have flown to Madeira, Italy and Tenerife without needing a fit to fly test with no problems at all.

However, we wanted to see if we could go further away for our honeymoon so my specialist centre arranged a fit to fly test to see how I would cope with long haul. I went and had the test and was told I was fine to fly anywhere without any oxygen. Now we just need to decide where to go as the world is now our oyster!