When Margaret Bennett’s symptoms were put down to her liver disease, she was told she wouldn’t see Christmas. It was a stroke of luck that led to her correct diagnosis of PH, and after starting on treatment, life is looking very different…

Story shared in 2024

“I was told I had the immune system disorder Common Variable Immune Deficiency (CVID) in 2003 – a diagnosis which itself took 30 years to get. In 2011, this caused Nodular Regenerative Hyperplasia of the liver, a rare autoimmune condition with no cure.

I was managing quite well until a couple of years ago, when I started becoming breathless and experiencing fluid retention. It got to the point where I could no longer walk up the stairs without having to stop halfway to catch my breath, and the swelling was out of control, so in October last year (2023) I was admitted to my local hospital.

They drained fluid from my abdomen and ran lots of tests, which included an echocardiogram – for the very first time. The results of this scan were referred to the cardiology team. A registrar came in to talk to me about them, and he’d obviously missed the training on how to deliver bad news sympathetically.

I was told quite bluntly that I was in extreme heart failure, and doctors didn’t think I would last more than a few weeks. I wouldn’t make it to Christmas, and I was being referred for palliative care.

The cardiology team’s advice was to ‘give her diuretics and keep her comfortable’. I felt like I’d been written off. It was absolutely horrific; there’s no other word for it really. This was 5pm on a Friday, and I spent the weekend trying to deal with all this news I’d been given.

On the Monday morning, it was a different liver consultant on-shift, and this changed everything. It was he who suspected it may be pulmonary hypertension, rather than my liver, that was causing the heart failure.

I was referred to a specialist centre, where I had a right heart catheter test which confirmed the diagnosis.

This represented a huge shift in my prognosis and my outlook. I was started on oral medication, and when I was discharged, the consultant said ‘I will see you here again in three months’. That’s when it hit me that I was now expected to live that long.

I was hoping that the treatment for my PH would simply stop the symptoms from getting worse, but I’m now able to walk five miles again and the right side of my heart has significantly reduced in size. It’s absolutely incredible.

I feel like I did a couple of years ago now, and I’m just so grateful. Simply being able to walk in the countryside feels like the greatest gift, and there aren’t enough words to describe how wonderful my PH team are.

They have helped to restore my trust in the NHS as if it hadn’t been for that consultant being on shift at my local hospital on that Monday morning, I’m not sure what would have happened to me.  

I think part of the problem was that I was such a complex case, seen by different hospitals for different disease areas. I know doctors can’t be experts in all areas, but there should be some sort of awareness of how conditions overlap.

I have since been told that one in 20 patients with portal vein hypertension – which I have had for years as a complication of liver disease – go on to have pulmonary hypertension. This shows the importance of all liver and heart specialists understanding it.

I survived the process of being misdiagnosed and got the right treatment in the end, but other people might not be so fortunate. This shouldn’t be left to luck.”