As I’ve explained on previous pages, I have had a chylothorax in my right lung. This is where a fatty fluid called chyle enters the chest cavity, in my case through small perforations in my thoracic duct. How those perforations appeared, who knows?

It took my local hospital a long time to work out what was going on, which eventually resulted in me having surgery at the Royal Brompton Hospital in London in 2009.

I still have some pleural thickening, which has always been monitored, but thankfully it has never caused any further problems.

My breathing starts to decline

Over the last few years, however, my breathing has gradually become worse.

I can suddenly become breathless even when I’m doing nothing. When I’m doing any kind of activity, such as walking, I can become extremely breathless.

I’ve raised my concerns before, but because of my complicated medical history, it has never really been investigated.

That was until a routine ACHD telephone appointment at the beginning of 2026.

During the appointment, my CHD team asked me a few questions and I explained how concerned I was about my breathing and the breathlessness I was experiencing.

She then asked me who my respiratory team was.

When I replied, “I don’t have one,” she was understandably rather shocked.

From that conversation, I was referred to respiratory teams at both Ipswich and the Royal Brompton.

My Ipswich appointment – Just because I look fine, doesn’t mean I am

In June 2026, I had my appointment with the respiratory team at Ipswich.

Now, I’ve always struggled with the specialists at Ipswich because, quite simply, they don’t know me or understand my health history.

Noonan syndrome is classified as a rare genetic disorder, although it is actually one of the more common genetic syndromes affecting development and heart structure, affecting around 1 in 1,000 to 2,500 people.

Unfortunately, many of the healthcare professionals I speak to, both at my GP surgery and at my local hospital, have never heard of it or have very little understanding of it.

In London, however, almost every medical professional I’ve come across has either heard of Noonan syndrome or has a good understanding of it.

Sadly, at Ipswich, they also seem to have a habit of adding TOF — Tetralogy of Fallot — to my medical notes.

I have never been told that I have Tetralogy of Fallot.

Because I have some similar heart defects, and because of the lack of understanding around my condition, this seems to be where some of the confusion comes from.

So, as you can probably imagine, my appointment with the respiratory doctor at Ipswich didn’t go particularly well.

“Why are you here?”

I walked into his room, sat down, and he was slouched back in his chair.

He looked at me and said:

“So, how can I help? Why are you here?”

I started explaining about my London consultation, but he stopped me.

“No. I want to know why you are here from you, not what others have to say. Because from here, there looks like there’s nothing wrong with you. You’re young, you’re fit, so why are you here?”

Instantly, I was irritated.

Who are you to sit there and tell me that there looks like there’s nothing wrong with me?

Who are you to question why my specialists have referred me?

From the moment I sat down, I found his attitude incredibly frustrating. He came across to me as extremely dismissive and, quite honestly, obnoxious.

Throughout the appointment, he insisted that I was fine. I wasn’t out of breath. I was fit. I looked fine.

Of course, when I mentioned that I had climbed Snowdon in September, that seemed to add even more fuel to the fire.

But I wasn’t telling him that to prove I was super-fit.

I was trying to explain the difference between walking on flat ground and walking uphill.

On the flat, I can walk reasonably well.

Give me an incline, however, and it becomes a completely different story.

I might manage 100 or 200 yards before I have to stop because I’m so breathless. I have to wait until my breathing settles, then continue. Then I repeat the same process again — walk, stop, recover, walk, stop, recover — until I eventually reach the top.

Was climbing Snowdon easy?

Absolutely not.

Was it one of the hardest things I’ve ever done?

Without a doubt.

But I did it.

Because no matter how tired I am or how out of breath I become, if I set myself a task, I will keep going until I complete it.

That doesn’t mean I’m not struggling.

It means I refuse to give up.

“Let’s see for ourselves”

At this point, the doctor decided he wanted me to walk up the stairs so he could, in his words, “see for himself” how bad my breathing really was.

So, off I went.

Five flights of stairs later, I was absolutely gasping for breath.

We returned to the examination room and he checked my pulse.

To his surprise, it was still relatively low despite the fact that we had just done some exercise.

I explained that I’m on beta blockers.

His face dropped.

I would have thought that was something he might have checked in my medical notes before the appointment.

But increasingly, this seems to be the way things are done now.

Instead of looking at someone’s medical history and understanding who they are before they walk into the room, you end up having to explain your own history to them.

And when you have a complicated medical history, that becomes exhausting.

More waiting…

As I write this, I’m waiting to see the Ipswich respiratory team again in December.

Hopefully, I’ll be able to change the doctor who is looking after me in this department because, honestly, I don’t want to waste any more time seeing the same doctor who gave me the impression that he simply didn’t care and wasn’t willing to understand me.

As for my referral to the Royal Brompton, I had some tests done there this week.

The tests have shown some clear issues, which is obviously concerning but also, in a strange way, reassuring.

At least something is finally being investigated.

I’ll see the London specialist again in November to go through everything in more detail.

So for now…

It’s more waiting. 👍