Admit it, you’ve got that song in your head now haven’t you?
You can thank me later.
I hope a lot of you will already know what this post is about, but I have a bit of an ulterior motive in writing it. We all know I’m a compulsive researcher, and I’ve been looking for information on Perinatal Cardiomyopathy since I was diagnosed but found very little: A Wiki post here, a teeny tiny study there, and a Facebook group with a pocket sized membership. I hope that Google does a good job of indexing this piece because I’d like anyone searching for Perinatal Cardiomyopathy to have something to read.
How many times can I say those words before it gets boring do you think? Maybe I’ll start calling it Perennial Cardiomyopathy by mistake again to see if anyone is still paying attention.
So back to Esme being born and me sitting in a hospital bed in a haze of post birth hormones having cuddles and feeding and already wondering when I’ll be able to go home when a happy young nurse bimbles over to do my obs.
Pulse – Excellent
BP – Beautiful
Oxygen Saturation – Shot-to-shit.
Nurse “Hmm, do you feel OK?”
internal monologue says “I’ve been awake for 3 days and just had major surgery, what do you reckon champ?”
My actual reply “Umm, not too bad”
Nurse” You appear to be crackling”
Me ”Am I not supposed to be doing that?”
Nurse “Not s’much”
Herein starts one of the most confusing periods of my life.
I was given an ECG, carted off for an x-ray the sum total of which was something was very wrong with my chest. It was full of fluid and my heart, for reasons unknown at this point, needed help.
Emmie and I were packed up and moved straight over to Cardiology where a lovely midwife sat with us through the night and I was started on some diuretics. I was offered beta blockers as well but declined them on the basis that it would have prevented me from breast feeding.
This did not please the consultant who somehow felt a good way to motivate me was to ask whether I cared about my health.
I was so annoyed at the whole exchange I had to tell the world of Facebook of my disgust.
Which made me feel better and also had the unexpected bonus of getting me a new consultant who actually gave a good god damn about me and my needs.
The next few weeks were confusing because there was a lot of conflicting evidence as to whether I had suffered a heart attack or heart failure. The ECGs said one thing, the blood tests another and it was a very frustrating place to be when you don’t know what any of it means to your future prospects.
I was on strict bed rest and hooked up to remote telemetry monitored at the nurses desk. If anyone wonders if these things work, they do. I was blessed with a visit from family and friends a few days into my hospital stay and the excitement of it made my heart rate soar. They were at the door like a crack squad of Hare Krishna telling me I needed to calm down before I brought on a repeat performance.
They had a point, the place was a clown short of the Moscow State Circus.
So every day they took more blood and ran more ECGs. I sat in bed with my baby girl and watched crappy daytime TV. I took drugs, got weighed, measured, prodded and poked.
They took me for an angiogram and I’m not sure whether I was more repulsed or fascinated by watching real time images of my own heart beating.
By this point I was becoming something of a minor celebrity in the cardiology world because nobody could pinpoint what had happened or why. I was discussed at length, expert opinions sought and I got so very tired of hearing “In my years of practice, I have never seen this before”.
I was low by this point, trapped in hospital when I wanted to be out starting my new family life and getting nowhere fast and when the consultant came to see me saying they wanted me to stay in for another few days I lost the ever loving plot and bawled for 4 straight hours.
I bawled until the consultant came back and relented, saying as long as I promised not to move I could go home after all. I think perhaps the crack squad had been onto him about what he was doing to their telemetry.
So I move home I did, and behave myself I did, living on the sofa day and night and taking slow steady steps back to a normal life.
I left hospital still without a clear diagnosis of what had happened. All they knew was my ECG was returning to normal (although my heart was still in moderate failure) and there had been no further acute episodes so all they had left to try was to run yet more tests after a few months to see what kind of after effects they could see.
There were none, and so to quote my cardiologist, in the absence of any other indicators, we can only say that you suffered Perinatal Cardiomyopathy (literally meaning heart failure at or around the time of birth) from which you have now recovered.
The prognosis for me a good one: my heart being completely normal now and the only question that remains is whether we can or should have any more children.
I don’t have an answer for that yet, but I’m working on it.