I love Instagram and the prettiness of everyone’s galleries but I have to admit that sometimes photo uploads can disguise the reality of the struggles of daily life. I guess that’s why I like my blog as it’s not only a creative outlet for me but it’s also like my therapy and a place where I can talk, express, rant or rave about something.
June was a pretty tough month for my family and I, firstly with my nan passing away and then secondly, my big sister Laura was rushed to hospital struggling to breathe. It turns out that she has a form of heart failure and has been diagnosed with Peripartum Cardiomyopathy, it’s a rare heart condition that you obtain from pregnancy. In fact only 1 in around 10,000 pregnant women get it. So why does my sister have to be that one? It feels so unfair but we can only deal with what is real and happening right now and not the ‘what ifs’.
Right now her heart is functioning on less than 33% and the doctors and specialists keep reminding her that her heart is a ‘severe’ case. We don’t know yet whether her heart will recover, stay the same or deteriorate but we’re madly praying and focusing that she will fully recover. They’re pushing forward her MRI scan so they can assess if the medication she has been given is helping her condition and can then give her further prognosis. My sister is such a headstrong character but very sensitive on the inside… she’s one of those people who would love to prove you wrong if you said she couldn’t do something. With her strong sense of will and God on her side I believe that she will come through this with the most positive outcome.
I feel it’s only right to share a piece of scripture because it gives us all as a family some sense of peace knowing that someone bigger than any of this has got it in his hands:
Philippians 4:6-7 New International Version (NIV)
6. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
7. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
To know that other people are praying, sending love and well wishes really gives us all so much peace and positivity about the situation and that’s really why I decided to be open about this difficult situation in hope that you’ll stand with us a family and have my sister in your thoughts and prayers. I’m not one of those to ram my faith down other peoples’ throats because I know it’s a very personal thing but in situations like this I feel like I can only be open and honest with how my faith has helped to carry me through these difficult situations and, in particular, my sister’s health right now.
Laura has two daughters; Naomi aged 10 and Eve aged 8, and newborn baby Noah who’s only 4 months old, so as you can imagine it’s been crucial that we’ve all pulled together as a family whilst Laura was in hospital and continue to do so when she’s back there for further tests and check-ups. My mum in particular has been an angel looking after all her children whilst Laura’s partner continues to work to provide for the family. It breaks my heart so much when I see little Noah’s face and how much he must miss his mummy. He’s at that delicious age where he’s got THE cutest little baby giggles and biggest beaming smile if he catches your eye and you pay him a bit of attention. I literally can’t put him down when I go to see him.
Currently Laura has been discharged from hospital but has to take things VERY easy because they don’t want her causing any further damage to her heart. She has to go into hospital once or twice a week for scans and for medication checks but until she can have her MRI scan, it feels like she’s in limbo. The doctors aren’t being very positive about her condition and have said it’s unlikely her heart will recover because it is so severely damaged but women in similar situations HAVE recovered from this and so I know Laura will prove them wrong. She’s still having irregular heart beats which could trigger a cardiac arrest if they worsened, and her meds sometimes impact on her blood pressure causing it to drop which again is dangerous. It feels like one big balancing act but I’m so glad the doctors know what they’re doing. It seems to be a condition that is slightly unknown over here in the UK but more research and prognosis has been done in the US, we know that she’s in the best hands though and just have to be patient with everything.
I thought I would include Laura’s story here too, more to help raise awareness of this disease and to know what the symptoms are because early diagnosis is essential.
Here is Laura’s story:
Saturday the 18th of June is a day I will never forget… the moment I was sat there in A&E on my own as the consultant reveals a chest scan has shown a shadow over my heart and that my heart is dilated. Feeling my heart racing even more I asked “Will I be okay?” and the response back was one of sincere sadness of “I’m not sure.”
The consultant proceeded to sit down next to me and asked me to go back to a time I first felt unwell…
In January when I was 33 weeks pregnant I decided to go to my local GP, I had been unwell for a few weeks, I had noticed I was more out of breath, at night I could hear this crackling sound on my chest best way to describe it would be like popping candy when I breathed out and just generally feeling really run down. The GP believed it to be a chest infection and mentioned that he didn’t really want me taking antibiotics as I was so close to having my baby and if I could persevere I should, he then passed me a prescription should I be unable to cope.
Not wanting to risk anything with my baby I persevered, explained to the midwives my breathing was getting worse and the common response was you’re carrying a big baby don’t worry! The little tinker was very snug and came just under 41 weeks pregnant and at a whopping size of 11 lb 4 oz. Due to complications at birth my first two weeks of my son Noah’s arrival was based in hospital as he was placed in Neo Natal for treatment. Again I started to notice I was out of breath walking up two flights of stairs and again explaining my symptoms to the midwives I was reassured it was just my body going back to normal after having a baby. I kept thinking that’s okay but I’ve had two other children and never experienced anything like this before!
Roughly 2 ½ months after giving birth England was experiencing the only bit of Summer it gets and the warm weather again was making it very difficult to breathe. All the symptoms from January came back but stronger. It felt like two hands pressing on my chest, crackling and tightness around my back, I noticed when walking on an incline that I had to stop to try and catch my breath. I have always been into my fitness but had to stop as I knew my body couldn’t handle it for some unknown reason.
I returned to my GP again and explained all the symptoms again and again I was sent away with antibiotics for a chest infection. Literally two weeks later on Saturday 18th June I had enough, I was out shopping at the Trafford Centre in Manchester and couldn’t catch my breath when walking the short distance from the car to the front of the Trafford Centre. Looking at my partner Christian, I said I don’t know what’s wrong with me, I can’t breathe properly at all. I called 111 and explained my symptoms and an ambulance came out straight away, they rigged me up to an ECG machine and they explained my heart was racing at 126 bpm, normal is 60 to 80 bpm. Without any delay they took me to hospital.
Within two days of being in hospital I was told that I had heart failure called Peripartum Cardiomyopathy. It is a pregnancy related heart failure… a disease which affects the muscles of the heart and what is worrying is that it often goes undiagnosed because of pregnancy. I couldn’t believe it. I’m 31, young, fit and healthy and I’m being told I have heart failure, all I could think about is my kids and my family!
Still in hospital it has been an emotional roller coaster, they have been trying to stabilise my heart so it doesn’t beat as fast but also doesn’t drop my drop blood pressure too low. It’s going to be a long and slow process, I will be set to have an MRI in 4 months to look at the extent of damage done to the left hand side of my heart and also any scar tissue. It’s hard to reassure my children that I will be okay, they just keep saying they want me home and what has been more heart breaking is looking at Noah I just want him to be able to know me and call me Mum and know I literally have been through it all to bring him into this world!
I currently have 1/3 of my heart working and I have been living on this reduced function for 6 months. I believe God has been keeping me safe and to the point where I had enough, I’m praying like mad that I will come through this and be able to be home with my children soon. It’s very early days and it is great that so many women on the forums are able to live a somewhat normal life with medication.
I wanted to share my story so that more women, partners, family and friends will be aware of the signs and symptoms and don’t just disregard it as pregnancy, get yourself checked out properly and make sure your GP is aware of Peripartum Cardiomyopathy!
Thank you for reading and what feels like listening to me too. We appreciate all your support, love and prayers!
Lots of love