Firstly I would like to say there are so many Amazing stories to read on my heart sisters.com Thank you for all sharing them with us!
My story begins I think back in 2008 when we lost a baby at 14 weeks gestation (a missed misscarriage is what they called it). It wasn't discovered until my 19 week growth scan, when they notice baby hadn't grown and there was confirmed, no heart beat. To our suprise baby Isacc was too big by now and I had to be induced & give birth to him. We got to hold him and have pictures which is a lovely memory to have. We will never forget him!
Unfortunately as I had continued to carry Isacc for some 5 weeks, before his passing was discovered, I was starting to get quite sick and my immune was very low, I had an elevated heart rate (I dont know what it was) & some chest discomfort which the drs did and ECG for and found nothing! The day after I was discharged I found myself up at my GP which a nasty chest infection...(common in heart failure patients) I sought the help of a Fertility Naturopath to get myself healthy again.... Some 5 months later we were pregnant with our 4th baby!
During my pregnancy I was closely monitored (so I thought) due to 1. having small babies & 2. having had a missed misscarriag. I went in for weekly heart beat checks at Antenatel Day Stay and had a few bumps in the road with my health, everytime I got sick it would develop into a chest infection! But my GP at the time tought nothing of it. I also had a elevated heart rate of 115pbm this was investigated via thyroid function test (I have an underactive thyroid) and test came back within normal range! so nothing more was thought of it & it was put down to just being pregnant!
I kept going to ANDAS until I was 22 weeks gestation, to which they were happy, an felt I no longer needed to be monitored. At 28 weeks I went & had the normal Gestational Diabetes Glucose Test...I never got to finish it as I was diagnosed with Gestation Diabetes and placed on insulin as my sugars were always high in the morning and because baby was small they weren't able to give me the does I required. So back up to ANDAS I went and continued to be monitored.
Thursday 8th Jan 2009 at my 33 week growth scan, babies stomach had stopped growing! So the Dr decided it was time to induce me and have this baby! I remember on that day feeling like my core body temp was hot and could not cool myself down, no matter what I did.
Friday 9th January 2009 early in the morning, I receive a phone call from the Maternity Ward, inviting me in to have the baby. So up we all go (Myself, Hubby & my Mum). Upon arrival I am put in a birthing suite and hooked up to a fetal heart monitor (my other 2 labours I had been very active I was not use to lying down) at 11.30am a dr comes in and breaks my waters and then Im placed on oxytocen & fluid drip and within 20mintues im in labour getting lovely back pains (baby had turned back on back) so we work on turning him around (which baby did lol). We had a few hick ups with monitoring babies heart beat as they used the probe on his head but it wasnt working so my active labour was out the window and I had to lye again on the bed (which I really didn't like as the lying down made the labour pain worse).
With in and hour of labour starting "Joshua Nathan Berger" was born, weighting in at a whopping 2kgs (4lb) he was tiny & healthy! I remember feeling so exhausted I couldnt even turn around to see my baby I had nothing left to give! (this was not normal for me) Due to his low birth weight & being a little early and my gestation diabetes, he was placed into Special Care Nursery and monitored for first 24hrs for the diabetes side effects and I went to my room with out a baby :0( (this was also my experience with my first baby, minus the diabetes) so I was no stranger to it, but it was still hard!
Saturday 10th Jan, I tried to spend as much time with Joshua as possible, he was too little & tired to breast feed so I expressed and he was tube feed for the first 2days.
Sunday 11th Jan, i started feeling a little unwell (I just thought it was from the labour) I told the nurse looking after me what i was experiencing.
1. Midd back pain (like your backs out)
2. Shortness of Breath
3. Heavy in the chest (as if someone was sitting on me)
4. Profound sweating (while feeding baby, sleeping etc)
5. Very pasty pale in complection (mum kept comenting on it)
6. Blue tinge to my lips
7. Dizziness (like I was going to pass out)
8. Keep running to the toilet with loose bowel motion
9. Tingling sensation all over my body from top of my head to tips of my fingers & toes and tingling lips!
10. Heart Beat of 138bpm (This should have been an indication that perhaps something was seriously wrong with me....NO ONE TOOK ANY NOTICE!!!!!!
Not even the Dr, that the nurse organised to see me later on the evening! Her dignosised was 'I dont know whats wrong with you', 'lets put it down to you've just had a baby'! and that was it she left and I never saw her again!
Due to our oldest Son having special needs (ASD & II) he wasnt coping with my hosptial stay. Monday evening I asked if I could go home and explained why. A Dr I knew came around and didnt examine me just asked me 'so how are you feeling'? I said 'ok' and he signed my discharge papers and let me go home.
Tuesday morning I was up about 5:30am was having trouble breathing & sleeping but yet so tired at the same time. I went outside to get some fresh air to make myself feel better. At 6am my phone rings, its the hospital saying Joshua is awake and after some breakfast...so Myself, my Hubby & my oldest son all get ready to go up to the hospital. I remember trying to get myself dressed and thinking why is this so hard why am I so short of breath, however will I be able to do this back and forth to the hospital! then I put it out of my mind, as we had a baby to go feed.
Hubby parked the car and I got out and walked to the hospital (thinking once again what is wrong with me!!!) I got to the special care nursery and was breathing like I had just run a marathon!!! I went in and took care of Joshie & while chatting to the nurses they suggested with my symptoms I go see my GP as it would be hard to be re-admitted into hospital after just being discharged. So I agreed (even though my GP at the time was just hopeless, I wasnt going to go see him I thought to myslelf) I thought I would get better and just wait it out.
I remember going out to the toilet as I had passed a blood clot and was worried maybe placenta had been left behind, causing me to feel so unwell. So I asked the nurse would she mind checking it for me and she said 'yes'. I felt really unwell in the toilet and had another loose bowel montion and felt like I was going to pass out! For a momment there I almost didnt go back in to see the nurse, I felt like I was just being silly!
Upon return to the nurse, she looked at me and said 'You don't look so well, I think you should stay here' and took me to the birth suite waiting room where I lied down! Not long after I was taken to a birth suite and re-admitted. I had bloods taken, then we waited it seems like hours. The afternoon came and we were still in the birth suite. John evenutally took Jacob home and my mum came up to sit with me.
When Mum arrived I had been taken to a room. A dr & his residents came and introduced themselves and explained I could have blood clots in the lungs or it could be my heart they weren't sure. I was then given oxygen to help my breathing it was so good to finally be able to breathe a little better!
I was taken for a chest x-ray (to see for clots & enarged heart) I later realised. I was once again visited by the Dr & his residents where they explained my heart was enlarged and that Wednesday I was going to have an ECHO (Ultra sound) of my heart.
I was so glad mum was still with me, I got so bad I didnt have enough energy or breath (even with oxygen) to walk to the toilet by myself. (toilet room was 2 meters from my bed) Poor mum had to wheel me in a wheel chair. She would wheel me to feed Josh until I couldnt get out of bed anymore. We did have a few laughs mum wasnt with worlds best wheel chair operator! lol I remember wondering why my milk supply was so low (I had, had ample supply with my previous babies)
Before I knew it Wedneday 14th Jan 2009 was staring me in the face & morning had arrived. I was wheeled down to have my echo (The Prince Charles Hospital had just started a heart clinic at Caboolture Hospital) I was very fortunate to have one of the heart failure specialist review my ECHO and dignose me with ADVANCED HEART FAILURE!
I had fluid on my lungs, around my heart, my kidneys had shut down, my liver & other vital organs were also failing me. I had blood regurditation from my heart flowing back to my other organs! I was in a bit of a mess so it seemed...
I had no longer placed my bottom back into bed and 5 doctors came into the room. I remember looking at them thinking wonder who they've come to see (I had two other ladies in the room with me) I was thinking dont look at me, dont come over my way...no such luck!
I was soon introduced to the cardilogist which at the time sounded like Blah Blah Blah...my mind couldnt cope. Each dr looked like they had the weight of the world on their shoulders :0( The cardilogist started explaining about the heart function and what it should be...he then said that my heart function was at 9% I dont remember much of the conversation after that. I had people all around me thats what it felt like anyway. Things were being attached to me, Monitors beeping & people talking.
I had to move from one bed to the other and went to get off to walk over and got told 'NO' I would have to scoot over from one bed to the other with out getting off the bed. Even that was a struggle, however I thought I woud just simple get off and walk I don't know. (I later found out I was the first lady in 15yrs at Caboolture Hospital to be diagnosed with PPCM) One of the Drs at Caboolutre Hospital that treated me did her case study on my PPCM.
I was wheeled up to ICU, where I was given an catherda and waited for the ambluance. I had the chaplan visit (who I met when we lost Isacc) & the nurse that wouldnt let me go home (she had taken a photo of Joshie to give me, such a lovely thought) I had a nurse I'll never forget ride in ambluance with me (she was a cardiac nurse) Lights were flashing!!! but NO Sirens (nurse didnt want my heart rate to elevate anymore)
I was taken up to ICU Cardic unit and thats when the fun begain! I was hooked up to heart monitors, fusion drips filled with beta blockers, lasix, blood thinners, blood pressure meds etc it was truely a concoction of drugs! Due the blood thinner & bleeding from just having a baby the dr said there was a chance I would bleed & they wouldnt be able to stop it.
I vaguely remember the Advanced Heart Failure Cardiologist (Dr Brown) coming into see me and saying that they would get all this fluid off my lungs and from my heart get me feeling more comfortable.
Dr Brown later rang my hubby & mum, where he explained things were touch and go, he really didnt know if the meds would work due to the heart function being so low! He gave it a 50/50 chance of it going either way! He did say because I was young (34yrs) never smoked & my blood pressure was good, they had more room to play with the meds so that was in my favour.
That night was the longest scarest night of my life (so far) one I NEVER EVER wish to repeat!!! I couldnt...NO didnt want to sleep for fear I wouldnt wake up (How would I have ever known) lol I dont think there was a vein in me that hadnt been poked with a needle for bloods.
My Brother & his family (My Sister in law & my best friend since we were 13yrs old) drove from their holiday in Tamworth to see me. John (hubby), my Brother (Nathan) & my wonderful Mum all came to visit. I laughted so much, everytime I didnt my heart rate would rocket up and alarms would go off & nurses would come in. Their visit certianly took my mind of my own woes, it was so therapudic for me, no medicene can beat the power of laughter!
It has been just over 3yrs since my encounter with PERIPARTUM CARDIOMYOPATHY and I have been truely given by GOD a second chance at life. I know when I was in my most darkest place GOD was carring me in his arms!
I stayed in hospital for 2 weeks an was let out early on good behaviour, so I could bond with my new little baby, who I hadnt seen in over a week. Not a good start for us both. I wasnt able to continue breast feeding Joshua, because of all the heart meds, I was told NO MORE children (that was a bitter pill to swollow) I have only recently truely come to terms with that sentense and I know it would be very selfish of me to risk it.
My last echo was in Jan 2012 & My last MRI was in Feb 2012 showed my EJ at 41%. No improvement in 2 years, I can't complain at least its not were I started at 9%.
My last visit to Prince Charles Hospital was in early March 2012 (My first stay in hospital since 2009)I was kindly place in the exact same room as in 2009 lol Lots of memories re-visited!
I have recently been diagnosed as having a Left Ventricular Branch Bundle Block (mean theres a block with the electrical pulses in my heart on the left side) due to the structure of my heart changing from the PPCM.
I have recently under gone a Chemical Induced Stress Test (Not something I wish to do again in a hurry). The side effects weren't pleasent. I will get my results Tomorrow (Tuesday 5th June 2012) Hopefully there is NO artery Blockages. A stress test shows during an elevated heart rate, if there is blocks to the blood supply to the heart.
If you have a LVBBB a normal tread mill stress test will not show up any blockages so a Chemical Induced Stress Test is required! You learn something new every day lol
Thank you for taking the time to read.....
A Story Of The HEART!
Please remember to spread the word as there is very little to NO awarness of this Life Threating Chronic Illness.
Provention is better then a cure to which there is NONE!!!
Once you have PPCM its yours to own for LIFE!
My Details
- Date Diagnosed: 14/01/2009
- Child: 4
- Initial EF: 9%
- Current EF: 41%
Story By John Nadene Berger