So I dont know really know where to start. I had bad swelling from the end of the 2nd trimester, but my midwife sent me to the womens hospital a few times with swelling and a bit of protein and they checked me over and sent me home. It wasnt until i woke up just over 2 weeks before i was due with what i thought was a horrendous chest infection i also have athsma, that it all began. I had an appt with my midwife that day and she sent me to delivery. I was assessed there and they sent me to Liverpool Royal for some tests for a pulmonary embolism, i had radiation scans and a vq scan... which to this day i don't understand how they pumped dye through my veins to look at my lungs, which would of pumped through my enlarged heart... but no one noticed. So I stayed in hospital and finally on friday they agreed to induce me. So the inducing began..... i couldnt breathe at this point. The midwife gave me some oxygen mixed with water and put me on a drip.... which would turn out to make the fluid in my lungs a lot worse.... as i was literally drowning in fluid. So i was monitored for a bit, then advised babys heart was crazy.... but so was mine...but this was never mentioned... so i was advised they needed to do a c section and it was to be under general...i asked to stay awake but was told because of my 'chest infection' it was to be done under general. I was then asked if i was going to breast feed which i said yes,the midewife then said well you wont be able too..still dont know why?, maybe they were aware i had PPCM at this point.
So I went to the theatre climbed over onto the operating table ...i remember crying i was so scared....i couldnt get any air.......... then i was out...
the next thing i remember I was waking up in Wytheshawe in Manchester.....
but inbetween it turns out i was kept at the womens hospital 6 hours after my section, my other half had met our baby...and then he was left for 3 hours... not knowing if i was ok..finally they came to him and told him i was very ill... and next thing they had transferred me to Royal Liverpool hospital and I was in intensive care.....my heart had failed. So the royal coudnt deal with me, my fiance and family were told i was going to Wythenshawe as I may need a heart transplant or an assister but they didnt know if id survive the trip in the ambulance. to this day i dont know if my heart kept beating in that theatre....
So i was kept intubated for 5 days in Wythenshawe with them waking me up for an hour if that each day with my fiance and family, i had a ventilator breathing for me, my kidneys were hooked up to a dyalsis machine, they were basically trying to dry my lungs, from the fluid and watery oxygen i had been given.... I had a aortic balloon pump in my heart... helping it..taking away things to give it the best chance it had..... no one told me anything because it would make me panic and make my heart speed up, im told my heart was beating close to 200 bpm...even when my partner touched my hand when they attempted waking me it would speed up....... i dont remeber the first time they tried to wake me, but i remember the next tme i was convinced i had no nose....and everything appeared so black, i was told i had a little boy and he was amazing.... but i wanted to see him. I remember crying...and i was so congested coz of the fluid i wondered why people kept touching my hands and feet, but they were like balloons....i had tons on needles in me....drips....tubes the lot it was horrible :(. My partner was told they would watch my progress but a transplant/Lvad was a possibility at this time.
the womens hospital never offered to transfer the baby with me :( i never met him for 7 days i never saw him at birth :( it broke my heart. He was poor at birth, had meconium in his throat and needed oxygen and antibiotics... he was blue at birth my delivery report says. he was in ncu for 7 days and then his daddy took him home.The minute he got the baby he drove hi to me, it was 11pm but he knew i needed to see my Dylan. he was tiny was 5pound 8 but hes thriving now...
i stayed in hospital for 2 weeks...the drs were amazed by my turnaround, i guesse i knew i had to fight for my baby.
Ive been told my heart is too severley impaired to have any more children....but ive got my miracle
i have many questions for the hospitals in Liverpool, they dont know enough about PPCM, and they missed opportunities to diagnose it many times
but Wythenshawe hospital was amazing id be gone without there help
sarah x
My Details
- Date Diagnosed: 05/11/2012
- Child: 1
- Initial EF: 20
- Current EF: 42
Story By Sarah-Jayne Renshall