Abigail Findley

My story started 5 years ago following the safe delivery of my daughter (my 2nd child) in 2011. 

I had a fairly uneventful pregnancy, I was surprised to note that I hadn't put on a lot of weight at all (a nice surprise, as I'd ballooned with my first pregnancy!), until towards the end when I remember feeling relieved that I was putting it on quite quickly (in retrospect this was probably fluid). 

The delivery was quick and uneventful and I was discharged the same day.  I remember feeling a bit breathless in the weeks leading up to the delivery, but I had put this down to being in the later stages of pregnancy.  My first delivery had been awkward, but nothing suggested any issue with my heart.

From around 2-3 days following delivery of my daughter, I very quickly became incredibly unwell.  I wasn't able to climb stairs and could hardly walk 3 metres to the next room.  I also had chest pains. 

My GP initially put it down to post-delivery anxiety, but I wasn’t sure as this was my second child and I wasn’t anxious about it, and he also sent me for blood tests for anaemia.  But I started to feel worse and began waking up gasping for breath.  I saw another GP who sent me to A&E (thank goodness!) and there I was found to have an enlarged heart.  I had no idea what that meant, but I was worried.  I went to see the cardiologist 2 days later (in retrospect I can't understand why they let me go home given the severity of my symptoms) and was immediately diagnosed with peripartum cardiomyopathy (PPCM). With an ejection fraction (EF) at that time of around 20%.

When pushed, the cardiologist at High Wycombe Hospital said that my chances were:  20% heart transplant (I dismissed this in my mind), 40% meds for life (this didn't sound too bad - my brother is diabetic so I understood chronic but manageable conditions) and 40% would recover completely (this is what I was aiming for).

I was admitted to High Wycombe Hospital, which was a tough time as I had an 18-month old as well as my daughter who was just a few days old.  I was told I could no longer breastfeed.  They started to unload the fluid and I immediately felt better and was discharged after around 5 days.  It took me a couple of months for the symptoms to improve enough for me to be satisfied.  At first, and for a few weeks after, I was unable to walk (even slowly) to my local town - a 1 mile flat walk - which was very frustrating. 

However, my symptoms did get better, and I started exercising regularly. I hadn't been offered cardiac rehab, simply told "do what you feel you can do" which in my view as a relatively young person (I was 31) was not sufficient.

My EF took longer to catch up, but 3 years post diagnosis, I had reached EF of 54%, at which time my cardiologist took me off the beta blockers (I was left on the ACE inhibitors).  I was then discharged from his care, with the view to have an out-of-clinic echocardiogram (ECHO) a year later.  I didn't receive this appointment, but felt fine. However, I thought if there was a chance I could come off all meds, it was worth chasing the appointment.  I chased the hospital and then went for the out of clinic appointment, at which point I was upset to learn my EF had dropped to low 40s.  Not awful, but considering I thought I would fall within the "recovered" category I was floored.  I was then put back on beta blockers, which I have always struggled with the symptoms of, and I changed cardiologists to a specialist in London.

I am now 5 years post diagnosis, and my EF is staying low 40s, and I am relatively lucky to not experience the symptoms of heart failure, but I struggle a little with the meds and fatigue.  Even though with the EF drop, came the development of left bundle branch block, my cardiologist said my symptoms were "too good" for a device, and I hope to stay this way for a long time. 

I managed a 10km (for Cardiomyopathy UK) last October in a fairly decent time - I think even though I wasn't the fastest I had the biggest smile crossing the finishing line!