My dream is to dance with Flynn at his wedding

4th September 2018

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A diagnosis of PPCM means Claire Sheppard, from South Wales, may never have the large family she always dreamed of, but being a mum to Flynn is a gift she treasures

Like many families this summer, Claire and Steve Sheppard will be setting off on their annual holiday with their son Flynn, who turns four on August 7.

But unlike most families, the chance to relax and spend time together is particularly precious to Claire, who juggles being a busy mum with the daily challenges of living with peripartum cardiomyopathy (PPCM).

Claire, 34, who works part-time as a complaint manager for Lloyds Bank, noticed her symptoms starting three weeks after Flynn was born.

“In the end, the only way I could sleep was when utterly exhausted, sat up with my head on a pillow against the bedroom wall,” she recalls. “Then during the day, I’d feel exhausted all the time. I felt dizzy and lost my appetite completely.”

Claire spent those first three weeks back and forth to her doctor’s surgery with newborn Flynn in his car seat. When she suggested PPCM, one GP dismissed her concerns - branding her an over-anxious new mum. But one night, as her symptoms started to get a lot worse, Steve took Claire to A&E and an echocardiogram confirmed her suspicions had been correct.

“When the echocardiographer said during the scan that I had the condition, I could have cried with joy as someone took me seriously and knew what was making me so ill,” she adds.

Despite “counting her lucky stars” she did not need to have a heart transplant or pacemaker, the hardest part of being diagnosed with PPCM for Claire is not the lifelong medication of beta blockers and ACE inhibitors, but being told “no” to having more children.

“I always dreamed of having a large family and adore children,” admits Claire. “I’ve had a second opinion with a pregnancy cardiologist and been told that even if I reach recovery, I still run a 25% chance of death in my next pregnancy. “Also, they don’t think my heart can function without a certain level of medication.

“To be honest, I cried myself to sleep almost every night for a few months afterwards. “I think I needed time to mourn the children I will not be able to have and the brothers/sisters I won’t be able to give Flynn,” she adds.

But during that time, Claire managed to see her life would take another path and has since thrown herself into an “amazing” community of friends with children, who ensure Flynn is never lonely or without someone to play with.

“My friends are fantastic and understand my limitations - although I’ve been told I do more than most ‘normal’ mums! “Meanwhile, Flynn has pictures of him and his friends on his bedroom wall to remind him and me of how many ‘brothers/sisters’ he has,” says Claire.

“He’s never once asked me for a brother or sister, as I hope he feels completely loved and content. “We like to take Flynn to a new country each year and take him on as many adventures as possible. Life’s an adventure and why not start them experiencing that adventure young?” she explains.

“Of course, adoption if always an option in the future and that might be a path we’ll go down when Flynn is a bit older. I need to focus at the moment on reaching recovery. “Although my heart may be ‘broken’ it is filled with a lot of love to give another little one.

“Having PPCM has changed my outlook on life completely. Flynn is a gift and so is my life – gifts I plan on enjoying to the full and will never take for granted. “My dream is to dance with Flynn at his wedding and I truly hope I will be there.”

Q&A with Claire 

Did you have a normal pregnancy?

Yes, completely normal until the last few weeks of my pregnancy when my blood pressure was rising and dropping dramatically and I had slight fluid retention around my ankles

It wasn’t until my waters broke that I noticed I must have been carrying a lot of extra water as they didn’t stop coming for a very long time.

There were also signs during my labour, as I failed to dilate past 2cm in 38 hours since my waters broke.

In the end, my heart rate started dropping, so they had to rush me in for an emergency C section.

How did you first hear about PPCM?

It was my neighbour’s daughter who lived in Dubai at the time, who after discussing my symptoms, told me that it could be PPCM.

On my eighth visit to my doctor’s,  I asked about PPCM and was told I’d be in a medical journal if I did have it.

The doctor seemed very amused when I suggested the condition and made me feel very silly.

Did your symptoms improve after diagnosis?

At diagnosis, on September 26, 2014, my heart function was at 20-25%. I was in hospital a week where they worked on getting the water around my lungs out of my body. They also carried out the angiogram and got me on the right level of medication.

Then after three months, I had another echocardiogram that showed improvement to 40%.

Then by May 2015, my heart function was at 50%. My heart has not improved further since then and I
continue at 50% heart function.

After seeing my cardiologist in February, they believe I still have a chance of reaching recovery 55-60%.

What medication do you take?

I’m currently on Ramipril 6.25mg, Bisoprolol 8.75mg, Spiralactolone 25mg and Ivabradine 10mg. My
Bisoprolol and Rampiril will be increased in August to 10mg, all being well.

Hopefully, I’ll be able to cope with the highest medications for a year, then a follow-up echo will determine if they can start lowering the dose. I’ll be on medication for the rest of my life, but hopefully, this will be with a recovered heart and a reduced dose.

How do you feel today - four years after diagnosis?

Daily life is a challenge. The fatigue and dizziness are the worst after a busy day and on a Thursday morning, after working two 10-hour days, I do feel like a train has hit me.

But four years after diagnosis, I’m hopeful and positive for the future, filled with a recovered heart and life taking me down paths/experiences I never even thought could be possible.  I now know how to manage my condition; knowing when to rest; what different symptoms mean and what to do when I have them.

I may have PCCM, but I won’t let it define who I am. It’s a condition I live with - not that controls my life.

Claire is part of online support groups, but there are not any heart failure support groups locally and she would love to connect with others in the Newport area, who have heart failure.

If you can help, please contact Cardiomyopathy UK and we’ll put you in touch.