Hello Again

Dear Readers,

It's been quite some time since I last wrote a blog post—the last one was back when I turned 33! Over a year has passed, and now it's 2025. It feels great to be writing for you again.

Honestly, I’ve stepped back from sharing much on social media. I realised that constantly putting my life online can take a toll, especially when it feels like everything you say needs to be justified, all because of the fear of trolls. While I know such people make up a tiny fraction, dealing with them is tough, and my heart goes out to those in the spotlight who face this kind of scrutiny every day.

Anyway, 2024 has been and gone and like everyone, it had its ups and downs. Health-wise, it hasn't been at it's best and I've been quite poorly. I've been in and out of hospital, more than I have mentioned, but I will delve into that later in the post. 

We scrubbed up for the Wedding!

Terry and I love getting involved with PHA UK events, so we were excited to be invited up to their offices with other PH patients and their carers, to be a part of a focus group session. It was great to meet up with some PH friends, as well as making new ones. The PHA UK support those who are affected by PH, so please do become a member, plus you get their gold award winning magazine, emPHAsis! 

PHA UK Focus Group
In April, Terry and I celebrated our 7th wedding anniversary, made even more meaningful by the fact that it also marked 10 years of being together! Then in September, one of my closest friends got married to the love of her life. It was a stunning wedding set in the Essex countryside, and we were thrilled to be part of their special day.

November brought another birthday for me, and with an exciting house move booked in for just a couple of days later, we had to cancel our original plans of hosting friends. Instead, Terry and I celebrated with a meal at a new Indian restaurant in the city called Mowgli.

Myself and the Bride

My birthday meal at Mowgli

My business, Signing Music Therapist, is going well, albeit only a couple of hours a day, but I work with such inspirational clients and I absolutely love my work. As the saying goes, where words fail, music speaks!

The biggest news of 2024 was that, after saving up and working hard in the spring to renovate our maisonette, we’re thrilled to have moved into a new home! It was crucial for us to find a property that met all our requirements. The most important being it had to be a bungalow since stairs are my nemesis due to PH. Amazingly, on the very day we sold our maisonette, the perfect bungalow appeared on Rightmove!

We were lucky to have sold to first-time buyers, and the bungalow we wanted was vacant, making the process relatively smooth. By the end of July, we had sold our old home, and just a few months later, we moved into our beautiful new bungalow—just in time to settle in for Christmas. We owe a huge thank you to three wonderful people who made what’s usually a stressful experience feel much easier; our estate agent, Mary, solicitor, Greg, and mortgage advisor, Darren. All highly recommend!

Spending our first Christmas in the new house was incredibly special. We even bought our first real Christmas tree, and the whole season felt magical. All our hard work had paid off, and we couldn’t be happier here. We have exciting renovation plans ahead and can’t wait to share some ‘before’ and ‘after’ photos soon!

As for New Year’s Eve, we had planned to attend our annual university friends’ get-together, but I had to go to the hospital, so we spent a quiet evening at home with Izzy instead.

Christmas at our new bungalow with my Mum

That’s a brief summary of 2024, and now here we are, already halfway through January 2025! On January 10th, I attended my regular PH clinic at the Brompton for a full day of tests. Given how unwell I’ve been over the past year, we weren’t expecting great results. However, the tests showed that things are relatively stable, with only minor changes. That said, there were some abnormalities in the "electrics" of my heart. As a result, I’m now waiting to have an Implantable Loop Recorder (ILR) fitted under the skin in my chest. This small device monitors your heart’s electrical activity and records any irregularities. Hopefully, it will help identify the cause of the daily palpitations and irregular heart rates, which have led to emergency hospital visits.

Back in September, I started a new medication to help with fluid retention, but it hasn’t been very effective. My team has now added an additional medication to try and tackle the issue. I currently have fluid build-up in my stomach and around my heart, which urgently needs addressing. This could be contributing to the progression of my PH, as it’s making exercise almost impossible. Even walking leaves me severely breathless.

As a PH patient with Eisenmenger’s Syndrome, my treatment options are more limited compared to other forms of PH. Intravenous (IV) medication has been mentioned as a possibility, but for now, we’re waiting to see if the new combination of treatments brings any improvement. I’ll return to the clinic in three months to assess whether there’s been any progress or if it’s time to explore new medications.

PH is a progressive condition, and as I get older, this could simply be the new reality—more symptoms and being more aware of their impact. Still, my medical team and I are committed to finding a way for me to maintain a good quality of life. I’m continuing to do the activities I enjoy, although I rely on my oxygen more now. Thankfully, I’m still fairly stable, which allows me to stay active and engaged in the things I love.

I remain hopeful that we’ll find the right path forward, even if it’s not clear yet. I know I’m in good hands. Always remember: PH is a part of us, but it doesn’t have to be who we are!

Getting my usual PH treatment

Despite all the health hurdles, we’re confident that 2025 will be a positive and exciting year. We have plenty to look forward to, including renovation plans for our new home, holidays and days out, growing my music therapy business and spending time with friends.

More exciting news and that is this blog website is getting a makeover!! Terry is building me a new website and I can't wait to show you the final product. You will still be able to access my blog posts in the meantime.

Thanks for reading!