These kinds of days are usually a VERY early start and a very long, exhausting day! 😴
Mum or my partner Ben usually comes with me, and my Dad used to come along a lot too. ❤️ But this time, it was just me and Mum.
My appointment was at 9am in London, so we caught the 2am coach from Ipswich to Stansted Airport, where we had to change coaches before continuing on to London.
We arrived at Victoria at around 6:15am and, because it was absolutely freezing 🥶, we decided to grab a taxi to the hospital.
Then came the waiting… nearly 2 hours until my appointment! So Mum and I grabbed ourselves a lovely hot chocolate from the hospital café ☕️ while we waited.
Finally, it was appointment time.
I was feeling excited but nervous, because I’m really hoping this appointment will help me get some answers as to why my breathing has been deteriorating.
I went in and met Dr Hull, who was really helpful. While I was explaining everything that has been happening, I could tell from his facial expressions that he was concerned too.
But what really stood out to me was that he seemed genuinely keen to investigate things properly and try to find some answers. ❤️
Dr Hull has confirmed that this isn’t asthma.
He explained that asthma affects the airways/tubes in the chest, whereas what I’m experiencing appears to be more of an issue with my lung expanding properly.
Because of this, he thinks the problem could potentially be related to either an increased amount of fluid around the lung or further thickening of the chest wall, which could be restricting how much the lung is able to expand.
This is why he wants to investigate things further.
He went through some of my previous test results and scans and decided that I need an up-to-date CT scan to take a much closer look at what’s happening, including the lining of my chest and whether there is any increased fluid or further thickening.
He’s particularly concerned because my breathing has been getting worse over time, so he wants to look at things in much more depth.
My lung capacity is currently around 50%, which really puts into perspective just how much my breathing is being affected. 🫁
The CT scan was done, and then it was back to the coach station to hopefully catch an earlier coach home! 🥳
And luckily… we managed it! 🙌
We caught the 10:30am coach from Victoria and arrived back at Stansted at around 1pm.
Now just the final journey home — another 1½ hours or so until we’re back in Ipswich! 🏠❤️
What a day!
Exhausted doesn’t even begin to describe it, but I’m really hoping that this appointment is the start of getting some answers and, most importantly, finding out what’s happening with my breathing.
