Living a good life with PH

Story shared June 2024

“My symptoms started in November 2022, about six months before I was diagnosed. I was really out of breath, and I couldn’t walk properly; it was really getting to me.

I used to do lots of walking, and I lifted heavy things, but suddenly just getting out of the car and to my front door was an absolute mission. I had a cough, and I couldn’t even talk properly because I was so breathless. My GP simply suggested that I should lose a bit of weight.

Eventually I started having blackouts, and the coughing and the breathlessness was stopping me from sleeping.

A waiting game

One night, I passed out and was taken to hospital by ambulance. Scans showed my heart was enlarged, but they didn’t tell me why, and I was kept in for a week with beta blockers and blood thinners. An echocardiogram even showed the right valve of my heart was leaking.

I was referred for further tests but was sent home in the meantime, as there was a long wait for everything.

My situation was the same; the breathlessness was getting worse, and I had another blackout. I event paid to see a private cardiologist, and he just told me to take an inhaler.

Another coughing fit led to me passing out again, and I spent another week in hospital, but they still couldn’t work out what was going on. When I was discharged, I was back to square one again.

By this point I couldn’t even lift my legs, or physically put one foot in front of the other. I couldn’t breathe, I was still blacking out, and I was in A&E every other night.

It was very scary, and although my children are all adults, it wasn’t nice for them to watch me have the blackouts.

Losing hope

I remember having an outpatient appointment at my local hospital and I had to go in a wheelchair because I was finding it so difficult to walk by then. The lifts weren’t working that day, so I tried to take the stairs, and I remember it as one of the worst days of my life. I couldn’t breathe, and I just thought ‘this is it’. I couldn’t see how I was going to survive.

My friends and my sisters helped to keep pushing the hospital for answers, and if we didn’t push as much, I don’t think I’d be here today.

Finally, I was referred to a specialist centre, but I had to wait for two weeks as an inpatient at my local hospital first, until a bed there became available. I missed Eid [an annual Islamic celebration], the last ten days of Ramadan, and my daughter’s 21^st birthday whilst I was waiting. It was a horrible, horrible time.

Once I got to the centre, I had a right heart catheter which showed sky-high pulmonary artery pressures and the diagnosis of PAH was confirmed. That’s when everything changed.

Light at the end of the tunnel

I was started on oral medication, and it’s been a lifeline. It feels like a miracle, because it’s made such a difference.

My specialist centre team are just amazing. They explained everything so well to me, and it’s a special feeling every time I go there. They have made me feel so much better in every way.

My religion (I’m Muslim) is about hope and believing that God will pull you through. I had faith that God would take me to the specialist centre at the right time, and it all happened the way it was supposed to happen.

When I first got there, I couldn’t see any light. I was giving up, and I wasn’t the same person I am now. I definitely got to the right place at the right time.

The care I received gave me a boost and made me want to get better to see my children and grandchildren. Now, I live for that. I take my tablets on time, and I try not to overdo things as I want to be a part of their lives for as long as I can.

Balance and happiness

I can now do a lot of things that I used to, because treatment has helped me so much. But I do listen to my body, and I know when to stop. It is about trying to find that balance.

I’ve found eating better has made a huge difference to how I feel; and I believe good nutrition is helping me to live a good life with PH.

My religion is important to me, and I can’t fast anymore because of my medication, which does make me feel a bit down at times because it’s something I’ve done my whole life. But my religion excuses me from fasting because it doesn’t allow you to burden your body with more than it can handle, and illness removes my sins.

I am grateful to all the NHS staff I’ve come across for not ever judging me and for being very kind and understanding of my beliefs.

I love to travel, but the idea of flying with PH was scary at first. I’ve conquered that fear though, as now I simply cut long flights into two. For example, my son lives in Quatar, so I fly four hours to Istanbul, spend some time there, and then get another four-hour flight onwards. I think it’s amazing that I can still travel and enjoy life, and it’s important to celebrate every little thing.

Before the PH, I felt like I was invincible. I take things easier now, but I still do things I enjoy. It’s important to, as everything that’s happened has made me realise just how valuable life is.”