30 May – 1 June: Flying visit to London for news about Darth Vader…

Author: Mrs A

Location: Brighton and London UK

Thursday: There was no sleep all night as I awaited my 4.45am alarm to send me off to the airport for my flight to the UK. I farewelled Mr A and taxied to Firenze airport.

All went without a hitch and my sister Helen met me at Gatwick Airport with my niece and nephew, Elliot and Isabel.

We had a lovely morning taking the kids to a local park, the cloud clearing to a lovely bright sunny day.

It was so good to have some time with my sister before Friday’s appointment in London.

Friday: Regular readers will know I have a rare disease, idiopathic subglottic stenosis (iSGS). Sadly there is no known cause or definitive treatment for this disease, which basically results in your airway closing up, filling with scar tissue. The reference to Darth Vader relates to how it sounds when you’re breathing through a narrow airway!

Since December last year, I have been trialling a new procedure which involves injecting steroids into the scar tissue while awake (under a local anaesthetic). It has been working really well, and until about Easter I had no issues with breathing. Unfortunately, since late April I had been starting to struggle more and more, with this visit to see an Otalaryngologist in London the only way to really understand what’s going on. It was a day I was simultaneously looking forward to and dreading, wanting to know more, but fearing I knew the answer already.

I caught the train up to London, and then across to Kew Gardens. There I met with a fellow iSGS patient, Jacky, with whom I have become friends after meeting online via the support group I run on Facebook.

My hospital appointment wasn’t until 3pm so I had a chance to spend some time doing something for me. I have seen many friends visiting Kew Gardens and the Chihuly Glass Sculpture exhibition and was keen to go for myself.

Jacky was a great guide, and we explored the incredible sculptures in amazing settings. We spent a couple of hours in the gardens before parting ways.

I headed off to Charing Cross Hospital (nowhere near Charing Cross station, interestingly enough, but nearer Hammersmith) for my otolaryngologist (ENT) appointment.

I didn’t wait long before Mr Chadwan Al Yaghchi (Chad) called my name. Chad is a trusted colleague of Guri Sandhu, the expert consultant who I have been seeing in the UK since 2014 and one of only a few doctors who does the steroid injections under a local anaesthetic rather than a general.

I signed my approval forms and had a laryngothracheoscopy (a camera which passes up through your nose, down your throat, past your vocal cords and into your trachea).

The camera showed the scarring was returning to my airway, and in the area it had built up I was breathing through around 6-7 millimetres (closed by about 50-60% – think about the diameter of a pencil when I should be breathing through at least double that). As you can imagine, any extra mucus will narrow this even further, and constant coughing will cause inflammation which can cause yet further issues. This was very disappointing news, but not that surprising – I already knew it was getting harder to breathe on all these steep hills, I just now had confirmation of why.

Chad continued with the injections, all done through the camera, and within an hour it was all over. Now I begin the waiting game to see how they impact the scarring. I need to nebulise saline (breathe in clouds!) at least twice daily to keep my airway moist and help avoid issues, and am keeping my fingers crossed my peak expiratory flow (how much air I can blow out at speed) improves, and the scar retreats.

The story of my breathing over the past year or so….

The coming week to ten days will be important to determine whether it’s worth flying back in five or six weeks for another injection, or whether I will need to go to more drastic measures and have a dilation operation.

Exhausted after all the news and procedure, I headed back to Brighton for the evening.

Saturday: After a few stressful and full days it was nice just to relax with my sister and her family in Brighton.

As the day drew to a close, it was time to head back to Gatwick and fly to Florence. It has been a hectic couple of days, made all the more pleasant for being able to spend some precious time with family. 

I now know I will be back in London again in July…the question is, will yesterday’s procedure stem the decline in my airway so I can just head back for more injections, or will things continue their downward trajectory and mean I need surgery? Only time will tell…meanwhile I feel even more determined to make the most of our travels.