In her first ever blog, written exclusively for this website, Salina Issory from London tells the tale of her PH – and explains how she has learned to adapt to life with IV meds and a rare lung condition.

I was diagnosed with PH in October 2017. I started to feel breathless at the beginning of that year, but I’ve always been overweight, so I just thought it was because I was unhealthy.  I started going to the gym but as the months went by, I was becoming more and more breathless.

I finally went to my GP in the September and had blood tests done. When I went for my check up and results, I was told to go to A&E straight away as my oxygen saturation was really low.

I was admitted to hospital for nine days and told I had PH. I was completely shocked and emotional – I’d never heard of this condition before.

I was put on oral medication and transferred to my specialist centre at the beginning of 2018. IV treatment was mentioned but I was adamant I wouldn’t need it. Unfortunately, my PH became more aggressive and life was getting harder, so I went onto IV treatment in the July.

I had to stop work soon afterwards as I couldn’t cope with the side effects and I do still suffer with them – but I do have good days too where I’m able to be active and feel that bit more ‘normal’. I’m super grateful for those days!

I’m thankful more than ever for the support I’ve got from my family and friends, namely my mum and my brother. They’ve been there with me every step of the way and I couldn’t have got through this without them.

They’ve seen my life change completely; however I have been determined to make memories for myself. I’ve had a great family holiday in Mauritius and I’ve been maid of honour at my best friend’s wedding in the Dominican Republic (below). I haven’t had as many nights out as I did before but when I do get the chance, I make the most of it – and cocktails are usually involved!

As for everyone, 2020 hasn’t been the year I expected. I’ve been shielding since March, and I get very anxious whenever I do go out. I’m very grateful that shielding for me has been really comfortable. I’ve had my mum and my neighbour’s cat to entertain me and I started baking and cooking, so it’s also been quite productive too.

I’ve got used to having this condition now, and with the amazing help and support from my brilliant PH team I feel more confident in myself and l like I’m ready to go back to work. I’m actively looking for a job and hoping something comes through soon.

I’ve also lost around 12kgs since being on IV, which I’m super happy about! Although my appetite is nothing like it used to be and there are days where I don’t feel like eating at all, I’m still a chocoholic and look forward to the takeaways on the weekends.

I’m now on the waiting list for a double lung transplant so it’s just a case of waiting for that call!