It is hard to know where to begin my story and how I ended up with heart failure in pregnancy. It certainly wasn't something I expected and I usually had great pregnancies, vigorous births (2-8 contractions 10 minutes apart), and dream babies. If I were to compare my pregnancies, this was the most stressful and there were so many things that potentially could have contributed to developing ppcm like finding and moving house, lack of sunshine and exercise in the months preceding my pregnancy, low protein diet, social isolation and uncertainty about the future. On the surface, people thought we led a dream life, running a website development business from a quaint country town. The rent was cheap, the business was busy and growing, we had access to fresh food from the farm and raw milk and life it seemed was perfect. Six months before my PPCM pregnancy, a woman walks into our house with our landlord, the local Catholic priest for a "friendly chat". She ended up reporting us to the police for buying milk from a local farmer and claiming our children were in danger. As it turned out the local farmer had been a local councillor/mayor and convicted paedophile. Unbelievably, we end up with a knock on the door from Child Protection and all our children had to be individually interviewed. The process was never really explained, but it took a terrible toll on us emotionally. Some people in town, had their own stories to tell, which they felt to now openly share with us. One mother told of us how her daughter was molested, another of how her daughter was raped at the local school at 13, the swinger parties between local families, the drug and alcohol abuse, and theft. Suddenly our rose coloured glasses were shattered and Child Protection left us feeling terribly guilty for bringing our children into this town but no options as to where things were any better. In their words, 'our boys had no marriage prospects' if we stayed here. The thought of my children marrying some dead beat drunk, wife basher plagued me but moving was a huge task and after I found out I was pregnant, we decided to stay until after the baby was born. Unfortunately, our realestate agent upon hearing that our landlord had entered our property illegally, quit and the local priest then thought it was best to get the Catholic Church to move us on with a notice to vacate. It was the worst situation to be pregnant in. The first few months of my pregnancy I had morning sickness. I really could not cope with the smell of baked bread and it was unusual for me to feel so nauseous. I had virtually no appetite or desire to eat anything because of the nausea and the stress of having to move house. At about 3 months, the morning sickness subsided but I just lacked energy and I put it down to being older and pregnant.
We were moving house and probably the first sign of trouble was some bleeding a few days before the removalist was to come. I put it down to stress and rested and the bleeding stopped. About midway through the move I had sharp stomach pains during the night but they were gone by morning, so I figured that it was just something I had eaten. Two days later, we had completely moved out, got our bond back and I was relieved and thought finally I could relax. We got home late and during the night I had the most incredible pains in my stomach like someone was stabbing me. I didn’t sleep and by the next day I was totally exhausted. While my husband and children were exploring the new surrounds, I was stretched out on the couch with pains that came and went. I started eating dry crackers, pineapple and foods that my stomach seemed to tolerate and I even developed a desire to eat ice (a sign of iron deficiency). The week went by and I was feeling weak and had a night where I broke out in hot sweats and the next day, I felt better and thought the worst was over but ended up giving birth prematurely. It was eighth homebirth, so it seemed normal to have a baby at home and although the baby had come early, he was a good feeder and lively.
Life returned to the sort normal pattern but then when my milk came in, I felt this heaviness in my chest. I remember asking my husband if that was normal. I had more milk than usual come in and so I thought, it must be the volume of milk putting pressure on my chest. I remember feeling my heart and timing my pulse. It was around 100. I figured that I must have misread it. I remember if I fell asleep after feeding, that I would hallucinate if I feel asleep and have these weird dreams, feeling like I was in danger. I remember after feeding, that I broke out into hot sweats but I figured I was older, it was possibly hormonal and it seemed to fix itself if I ate homemade bread which we ground from our own flour. Fairly soon after the milk came in, I felt a tickling in my throat; I thought I was getting an infection and so I started gargling with apple cider vinegar. The tickle moved from my throat, to my chest and I started hearing noise in my chest. It was a strange cough, because it was irritating but never fully developed into a full blown infection. I also noticed that suddenly, I was fat around my tummy. After I had given birth, I did not have the usual flab around the tummy area but a few days out, my tummy had all filled out again. It was a dry cough, and I found it hard to sleep because of the noise in my chest. I was so tired at times, I found it hard to concentrate, difficult to talk like I was dyslexic, hot flushes, and I kept thinking I will get better, this will pass. Some days I felt stronger than others. I spent most of the day feeding and caring for the baby or just sitting quietly around. About a week after delivery, I was wearing stockings and when I took them off; my ankles had blown up and were full of fluid. I read that it could happen in pregnancy. I remember my husband asking me about it and telling him that it’s probably hormonal and if it’s not, then I could be dying. It was a joke, well so I thought. Of course, it was hard to believe the latter, since I had always been healthy. The days went by like it was one long day. At times I felt a bit dizzy but I controlled that by sitting. I coughed up pink sputum and when I had diarrhoea that worried me but it made me feel better, probably because it took fluid out of my system.
Two weeks out, I felt I had turned the corner and I had spent most of those days between the bedroom and lounge room, and being a strong spirited woman, I hated people to see me sick and I summoned every ounce of strength to speak to visitors. Anyone looking at me would have thought that I was fine. I really struggled to talk and it was as though my mind and speech had some sort of connection problem and later I understood that it was lack of oxygen to my brain that was causing this brain fog. Ironically, a woman that I had known at the old house, who was now living near me, came to visit a week after I had given birth and as it turned out she had worked as a nurse in cardiology but she didn’t notice the signs that I was in heart failure.
The house we had moved into was on an elevated position, and so I couldn’t walk outside because that would mean I would have to walk back up steps but two weeks out, I felt sure that I would be able to go out. In the whole time, I believed it was gastro that had weakened me and that if I ate and rested, I would get my strength back and it seemed like my body was recovering.
Then, the unthinkable, we woke up one morning and the baby passed away in his sleep. He was 2 weeks old. I reached over to pick him up to feed, but he did not stir. I touched his face, he did not move. He had been so happy, in the hours before, and had drunk so much milk but now his body was lifeless. Blood ran from his nose and I thought for a moment, there was hope but he was dead. His spirit was gone. It was the most traumatic experience of our lives. I could not believe it. He had fed for four hours the night before and had been up and awake at 4am in the morning. The weirdest thing was that night, I had no chest congestion and slept for a solid 5 hours and so did everyone else and no one woke up till around 9am, which is so unusual. The night was so silent. I had somehow tapped the keyboard and the television went into mute. The show that was on was the black and white version of Tarzan where the monkeys came and stole the baby, killed the father and left the sick and dying mother. I reached over and somehow spilled a glass of water and at 3am I woke with a start because I had diarrhoea. Jasher was unusually happy and chatting to himself and I put him down next to me while I ate some leftover dinner and lay down thinking that I would only be asleep 15 minutes before he would cry to be held or fed but woke up 5 hours later. I remember that morning so clearly; I felt that I had turned the corner. I was finally feeling well. There was a peaceful quiet about the house and it felt like the house was really our new home but then this reality was suddenly shattered.
I would have sat with my baby, holding him and crying and grieving his loss until I could cry no more but in our modern world, this is not done. With a heavy heart, we told our ten other children, that their baby brother was dead and they all cried, from the oldest to the youngest and a solemn silence fell upon the house. I did not know who to call but I guessed, that a local medical practice could help. The woman answered the phone. It was a Sunday and she did not know what to do and asked me to call an ambulance and I told her that the baby was dead. She told me she would call me back and hung up. The phone rang. We knew who it was. This was not how I wanted to grieve, but the business end of notifying authorities had to be done. The doctor came into our house and then the police were called to file the report. We didn’t understand the procedure or why we were separated for questioning. Time seemed to stand still and yet we were asked to remember with accuracy the smallest details and provide an accurate time line of events. It felt like we were telling a story that happened to someone else, and yet this was our reality. We spent the entire day with a dozen police at our house, who asked questions and took photos. We were asked questions over and over again. Many of the police officers were sympathetic as we shared one of the most devastating and intimately difficult times of our lives with complete strangers. The day turned to night. Jasher was to be taken from us to Melbourne. We were given a booklet from the Coroner’s Court on the process but understood little of it. I did not know at the time, that it would be the last time I would look upon my baby or hold him. I always expected to hold him one last time, to lay him in his coffin and to kiss him goodbye but that was not to be. Jasher was taken to examined, cut open and dissected and we found out, that although legally we could object to the autopsy, it would mean going to court and the likely outcome would be that the court would order the autopsy irrespective of our wishes. Jasher was now the property of the State. He was gone and we were lost, part of us had died with him.
The cause of death was never ascertained despite the medical investigation, though failure to thrive was a factor and it was most likely because I was developing PPCM for most of my pregnancy. To this day, I cannot explain his passing and it was as though he decided it was time to leave and left. At that time, I had this feeling that he had died to save my life. I remember telling the children, that I felt that he had died to save my life and had come too early and that I was unable to carry him to term but I didn’t realize that I was in heart failure. Every part of me, wished it was me and not him. A mother is not meant to bury her baby.
When the police left , I could not sleep and suddenly my health just plummeted. I have no idea how I made burial arrangements. I remember holding my head and knowing it had to be done and I had to take care of it because no one else in the family could do it. I was holding it all together. The body had been taken to the Coroner’s Court and initial scans found nothing, so an autopsy was required. We were distraught and the thought of having our little baby cut open was horrific but after some phone calls, I realized I did not have the strength to legally oppose the autopsy and that we would be unlikely to win. I hoped the Coroner would see our grief and allow us to bury the baby but my objection noted but request denied. We reluctantly agreed to the autopsy. The pathologist doing the autopsy was a very compassionate man and when we spoke, I felt like we had known each other all our lives. It was so easy to speak to him, and we had a connection, which is hard to explain. He told me, “to treasure the 14 days, we had with Jasher” and he involved us in the process of finding answers for why Jasher had died. He comforted me as I cried out my heart, when I asked questions for which there were no answers.
The pathologist asked me questions about the birth. He was really kind and consoling and he said to me, “I don’t know why, but I just feel that you should go and see a doctor”. I told him, I didn’t want to see just anyone; I didn’t want to get the wrong diagnosis. He understood. He made phone calls and found a doctor at Werribee Hospital that he knew and gave me his number. I called him but he was reluctant for me to come down to the hospital because it was a long way from my house. I was prepared to travel if it was a good doctor. He told me to see a local doctor, and I got an appointment for Wednesday evening. We had gone out to choose the plot for the baby and I could hardly walk to the plot without collapsing and catching my breath. I walked into see the GP and imagined he would say, everything was fine and that it was the stress of grief but when I got there, he told me. “I have already got a phone call from the pathologist, and the doctor from Werribee. I’ve heard all about you.” He took my BP it was 135/111 and pulse was over 112. He wrote me a letter and sent me to local hospital. He told me to go straight away and I was admitted for hypertension and peripheral odema post partum. I was in shock, was I that sick? I was the ultimate reluctant patient but every doctor I saw, had received a call from the pathologist, who even called to speak to me. When we spoke, I felt like I was speaking to an old friend and it was comforting to have someone care so much. The hospital never explained what I had, they gave me a working diagnosis of postpartum cardiomyopathy, talked about EF, blood pressure, protein leakage and I remember believing that it was high blood pressure that had caused my heart to balloon out and my kidneys to fail. When they admitted me, the only person that sat by me was a nurse who suggested that I go home and try taking dandelion tea because the diuretics the hospital gave leached potassium. I had never really had good experiences with medicine and I didn’t want to take anything that was going to make me dependent and sicker. I was not in a good place emotionally or mentally. I just wanted to go home and be with my family and bury my baby. I remember speaking to the registrar and all they kept saying was that I might be on medication for the rest of my life and when I asked him, what if I have another baby, he said, “I would probably die with the baby” and he never ever said I was in heart failure or that I was dying or that if I took the meds I would get better. I remember the initial EF was 35%, and my heart was only pumping out half the blood it was supposed to, and that one of my valves was leaking but no one seemed in too much of a rush and I wasn’t hooked up to any monitoring device, so I decided that I needed to go and bury the baby and signed myself out of hospital.
That night, the GP who had admitted me came to see me. He basically walked into my house and said, you need to get back to hospital or else you will die. He particularly emphasized that I would die in 2011 not some distant future date and he told us, he would be back in a few days to make sure I went back. (Later he would tell us of the story of how he ended up discovering that I had discharged myself from hospital and what freak chance thing that was) That was the first time anyone had told me that I was dying. I still had it in my head that if I got my blood pressure down, my heart would return to normal and no one had said the medication would help to heal me. I was simply told that I would probably be on medication for the rest of my life and to me, living with a heart that half worked was not a life and after losing a baby, I didn’t really care whether I lived or died. I remember grilling the registrar and asking him why if the medication was good, why all these patients were in this ward, ‘They are taking the medication, why are they all here?” and he really had no answers that satisfied me. If he had only explained to me that the medication would give my heart a rest, stop the immune dysfunction and give my body a chance to heal, I would have taken the medication then and there but all the doctors were reluctant to use the words death, heart attack, stroke, and they didn’t want to give me false hope of recovery, so they thought the wait and see and you may be on medication for the rest of your life was a better option. For me all I could think about was my baby and put him to rest, and thinking that I would be on medication for the rest of my life with a heart that only half worked, was not a reality I wanted and I wanted to look into alternatives. Never once, did the hospitals’ doctors tell me of any successful patients who had used the medication to heal but they wanted me to put my trust in them without giving me any hope.
I needed to bury the baby. My husband and my eldest son stayed up with me all night making sure that I didn’t sleep because every time I feel asleep I stopped breathing. I was very close to dying that night but it was something I needed to do. I was willing to risk my life to bury my son. It was a very long night and to stay awake, I finished off my GST tax statement and made sure all the bills were paid and money was in the bank accounts for day to day expenses. I took the opportunity to set our affairs in order before going to hospital. It was a sense of normality; a distraction.
The next day, we brought forward the burial and the funeral director arrived with Jasher’s body. I could not open the casket, because I was afraid that I would be so consumed with emotion, and poured out my soul in grief, that I would die of a heart attack or stroke. We took Jasher to be buried in a small graveyard in Portarlington, and travelled down small, one lane country roads to arrive there. The journey was solemn and surreal. The grave site was dug and we had brought sea shells and flowers we had gathered for him. Each child that could read, read from a verse in Isaiah.The only person that legally had to be at the burial from the Cemetery, walked over to my husband and told him after the burial, he was married to a woman whose maiden name was the same as ours. It sent shivers down my spine because the odds of that happening, of having a person that was closely related to us attend the burial as one of the Cemetery staff, was astronomical.
Was this how things were meant to be? Was Jasher meant to die to save my life? I didn't know the answer but I just learnt to accept the situation and live in the moment.
My husband dropped me off to the hospital but had to leave to get sleep after the long night watching over me. I was surprised the hospital didn’t give me meds on the spot or put me on some sort of machine on me to know I was still alive. I waited hours and just before I was to take the meds, my vision went haywire for about 30 – 45 seconds. The moment I took the meds, 1.25mg of BB, 1.25mg Ace, 40mg of fusemide and 4 magnesium tablets.. I felt better straight away. I was even able to walk a few hundred metres to the café the next day. It was like a miracle. I had some vigorous discussion about the meds with the doctors because I could not tolerate more than this dose and I did not want to go home and lie in bed all day. My children had been through enough. I hardly saw the cardiologist. Everyone would say, “We’ve heard all about you” but not until I got my medical record did I realize that somewhere along the line, the arrogant registrar had written some nasty things in my report about me being a danger to my children and that I had let my baby die. It explained the behaviour of some nurses but at the time I was blissfully ignorant and thankfully so, as I would not have had the strength to defend myself against their judgements. It was bad enough having Child Protection interview us, on the third day I was in hospital and the police think that we were trying to evade them by making up a story about me being in hospital. There were some horrible judgements written in the record, I cried and cried and felt a terrible sense of betrayal.
The night nurse, Kylie came into my life and befriended me and looked after me. I was shown compassion by a number of nurses, and disdain by others but over the period of the week, my warmth to them, changed their hearts to me. When a child dies at home, DHS are called in to ensure the safety of the other children and to collect information for the police. I was not allowed the space to grief; while openly seen to be holding things together, privately I cried, while no one saw my tears. I knew that my every action was being watched and judged. Did I cry too much, that deemed me mentally unstable? Did I cry too little, that I did not care for the loss of my baby? Even I, started to judge myself. Perhaps I truly did deserve to lose Jasher.
The same registrar, would not let me go to bury my baby, who made a half-hearted apology to me when he snapped at me after I came back in and he had said something to the lines of how he couldn’t understand how a smart, articulate woman like myself couldn’t see reason and I snapped back at him, “have you ever lost a baby”. It didn’t stop him from mocking me during my stay and daring me to do laps around the hospital floor while he timed me. Twice I was given the wrong meds, I had a nurse tell me my room was a pig sty I had conflicting information from nurses and doctors and no one could agree on anything. I had a private room with a great window but it also had a faulty air duct, that pumped in freezing cold air, so I hung a blanket over my bed like a tent, so that I would be sheltered enough from the cold air to get sleep. I was so cold in the room, I ended up walking to the common room to sit and it was at this stage that the nurses decided that they needed to do something about me, not being able to stay in my room and later that day someone came to fix the duct by taping a towel to the duct. It was a not perfect solution but it worked and I still had a sheet over my bed. It must have looked really odd to the doctors and nurses coming in but I did what I had to do to survive the cold. Some nurses were kind and gave me hope that I would recover and be off the medication but others would pull me aside and tell me that I had to get used to a new way of living, a medicated life. At one point during my stay, it dawned on me that none of the medical staff had ever had cardiomyopathy and only had their text books to rely on to treat patients. None of them could see inside me or how I felt or know how the medication was affecting me and if they had never been chronically ill themselves, they would not understand all the emotions that come with it. For the week I was in hospital, I did as I was told. Kept count on my fluid levels, ate the very bland hospital food, rested and reflected. I decided it was best not to ask for too much information and that I would research it myself because it became too confusing to listen to so many different views. The pharmacist was the only person that made sense to me, telling me that the medication would slow my heart and give it a rest and allow it to heal and that it would get stronger over time. I was fortunate that my body responded to the medication and exercise and that I didn’t deteriorate rapidly and when I look back, it is easy to understand why so many women do not make it in time because the onset of serious symptoms often occurs when the EF has dropped to critical levels and once below a certain level, the heart functions spirals downwards very quickly.
I believe the pathologist trusted his instincts and knew that there was something wrong and because he was persistent in calling all of the doctors, no stone was left unturned and all tests were done to get my diagnosis. He certainly made an impression on every doctor I saw and my medical records were sent and added to the autopsy report. Unfortunately, many other women have not been so lucky and have died undiagnosed or diagnosed too late and the stories I have heard since, about the long struggles to get a diagnosis, heart attacks and strokes, made me realize just how fortunate I am to be alive. PPCM is a condition that is deadly because it is camouflaged by symptoms of pregnancy and is not well known or understood. I can still see in my medical record in the box where it asks, is this patient suffering from a life threatening illness, the box is ticked ‘no’. Medical staff need to understand PPCM is VERY life threatening and patients can die very quickly. The box should have been ticked, ‘yes’.
Everything that went on in those dark days, tested our marriage. I spent so many days walking the beach in tears. The pain was so difficult to bear and there was nothing I could do, to roll back the clock. Jasher was dead. Where did we go wrong? Every detail of my life had been dissected by the police and DHS, and their questions resonated in me, causing me to question and doubt every decision I had ever made. I had to be strong but inside me, my world was collapsing and I wondered if I would exist in this dream like state for the rest of my life. It was like being doubly cursed. My pregnancy had led to heart failure, and Jasher was dead. It seemed like my pregnancy had been for nothing but I refused to believe that Jasher was sent to injure or kill me. I did not really understand what was happening but I was told by God that he would heal me of all my sickness and disease. I held on to that promise, and sought Him with all my heart and all my soul. If we had not held on tight to the Spirit and living words of YHWH, our life would have ended the day Jasher died. Our marriage would have ended. We would have been lost. Death does not bring life; death brings suffering. Jasher was not meant to die.
I have been pretty much on my own in the recovery and I’ve done a lot of research. Almost all of what I have learnt about PPCM has been through the internet. When I woke up one night with blood in my stools, I found an article about a study done on 25,000 patients and how too much heart meds leads to increased risk of stroke, heart attack, etc. I decided that I was comfortable with my pulse at 60 and there was no way in the world, I was going to take more beta blocker just because the text book said to and I was also mindful that my kidneys were still not functioning normally and I did all I could to avoid stressing them more by keeping medication to a minimum. I was lucky because when I got sick with the flu, my BP dropped to very low and so did my pulse. I also knew that my cardio would not reduce my meds, so I started on a low dosage and have used other means; diet, exercise and supplements to get my baseline BP and heart rate lower and my body has made the adjustment to the lower blood pressure. Maybe I could have healed faster with a higher dosage or maybe not, but for my emotional and spiritual well being, staying true to what I believed would help heal me was important to my recovery. Too often, belief is brushed aside but belief is incredibly powerful as often documented by the idea of a placebo.
I’ve read some great cardio books and natural health books and used the information to get well. I found a wonderful, naturopathic GP who went over my medical record, prescribed supplements and treated me for an untreated urinary tract infection and is helping me with getting back my iron stores and find any autoimmune issues. I believe, if I don’t attack the root the illness, it is going to spring up in some other form. I’ve watched my father in law go through this with his health, and I just didn’t want to go on the medical merry go round. My personal belief is that pregnancy can bring out illness that is simmering in the body and if I had not got PPCM, I would have got some other chronic illness later, when it would have been harder to deal with. My baby’s life was a gift to me because he showed me a new way of living and gave me a new direction, compassion and some wonderful relationships. I miss my baby Jasher, but no matter how many scenarios I play out in my head, his death saved my life. Every other scenario ends in my death. If we had only moved earlier before I was pregnant, may be Jasher would still be alive but we will never know, how the events that transpired contributed to my heart failure and his death.
When I left hospital I could barely walk 200 metres and hills were a huge problem. I remember walking and looking over the beach behind my house and knowing that I could not go down to it because I would never be able to climb up again and my eighty year old mother in law could do it but I could not. In the first week, I ate a very simple diet, juiced a lot of celery, carrots, apples and oranges, and did not have any meat or milk because I wanted to focus all my energy on recovery. I was following one of the heart programs I found from the library. Each day I would push myself to walk further and by the end of the week, I was able to walk two kilometres and to the beach. One week out from hospital, I felt normal and went about day to day life.
Two weeks out, I had lost all my fluid and then I started adding good quality meat and organic milk to my diet of vegetables, fruit, legumes, wholegrain bread, nuts, rice and fish. By six weeks out of hospital, at my first renal appointment, my renal function had normalized but I was still low on iron but two months after, my iron was low normal, though iron stores were still low.
I ordered the book, "The Weiss Method" by Decker Weiss and started using the diet plan, supplements and cell salts that the book recommended. I did the first 30 days without the supplements because I missed reading the protocol but then redid the 30 days with the supplements, digestive enzymes and liver cleanse. I didn't complete the diet because I found the next 30 days were quite bland and it became too difficult to manage separate diets. I also felt so much better.
The GP that admitted me retired to do other things within the medical world and his replacement had no idea and no desire to even read my file or learn anything. He started talking about valve replacements. He was clueless and patronizing. It took me 4 months to see a homeopathic GP and she has been excellent. She treated me for an urinary tract infection, and rebuilt my immune system with the addition of vitamin D, cranberry pills and armaforce pills. I also took, vitamin C, zinc, magnesium, selenium, iron (natural), bilberry, high quality fish oils, calcium phosphate, spirulina, and b12. My mother also contributed to buying supplements for me and that was wonderful as they are expensive. Since eliminating the infection, my baseline BP has dropped to really good numbers.
Five months out, my first ECHO since DX, my EF is 48%. Normal is 50% but I was a bit disappointed but it gave me a reality check that i needed to be more disciplined and do more exercise during the day to build up my heart strength.
So I am almost there and although there are no clinical studies to prove it, I am convinced that it is possible to recover on low dosages of medication provided that exercise, diet and vitamin/mineral imbalances are addressed. My cardiologist says there are no clinical studies on the dosage I am on which is 1.25mg or BB and 1.25mg of Ace Inhibitor. He even once went on to say, the dosages were so low, I may as well not take them but when I discuss future weaning, he just says 'how do you think you are going to wean and I smile back and tell him that I will quarter the pills and he laughs. My cardio is actually a very nice man but I never really got to tell my story, and lived with the stigma of being labelled that holistic, crazy homebirthing woman whose baby died at home. Every time I saw him, I was too upset to speak about all that went on in my hospital stay and how ill prepared the hospital was to deal with the emotional turmoil of a woman in grief. Walking has been a very important part of my recovery and today I need to walk further and faster in order to exercise my heart and I have spent many hours in reflection and prayer. Faith and hope is so important to recovery, especially to a grieving mother.
I have joined a few facebook PPCM support groups, local home schooling families, made new friends and got in contact with old friends. Seven months out, my journey in my new life is just beginning. I see the whole experience as a second chance in life. It is an incredibly humbling position to face death and to need help. There are some wonderful people in this world that I have been truly blessed to meet and know and there are doctors and nurses who have a passion for medicine and helping people. It is unfortunate, that the ones who don’t can cause so much harm. As one GP told me, ‘don’t tar all doctors with the same brush’ and indeed he is right, there are some truly wonderful doctors who use the best of medical knowledge to help patients whether that be with conventional medication, homeopathy, nutrition, exercise therapy and/or supplements. Keep searching until you find those doctors and keep reading until you have your answers. Pray and be at peace.
So, its March now and my second appointment with my naturopathic GP and the blood tests have shown that my iron levels are normal but my iron ferritin reserves are still very low. She has asked me to take iron supplements - FerroGrad C. She also brought up the fact that I tested positive for autoimmune form of heart failure, not viral and I have done a 40 Food Sensitivity Panel, to identify any problem foods that I may be developing antibodies for. As I sat there, it dawned on me that keeping traditional diets was not about reading some book and adopting a new diet but returning to the traditional diet of one's ancestors. As people our genes and the microbes in our stomach determine what we should eat and many of strengths, talents and qualities. Learning to be true to your past, as well as your present and to forge a path forward that involves physical, emotional and spiritual balance and harmony is important to healing. As a child who came to Australia in 1976, and told to forget her native tongue and assimulate into white society, I had done as my parents had wanted and excelled at it but life has a way of bringing one full circle, and being ashamed of my heritage was to deny myself and the qualities that I inherited from my parentage. So many Chinese of the younger generation have become increasingly Westernized and lost. We look in the mirror and see the face of a stranger because we expect to see someone that looks Eurasian and we see a very Asian face starring back at us. Facing death and experiencing the death of a baby, brings life into a sharp focus. Life is a sum of experiences, relationships and knowledge and death causes one to reflect on the past; strengths and weaknesses, joys and sorrows, and beyond the medical side of EF, blood pressure, heart function is the deeply personal journey to move forward with compassion, love and strength, to live a better life and be a better person.
In Ancient Greek, the Kardia means, "the heart; mind, character, inner self, will, intention, centre". There is also a condition called Takosubo where extreme stress causes one's heart to fail (the broken heart syndrome). The heart is an amazing organ because it has the ability to regenerate cells but it is also the organ most affected by stress and although our modern thinking likes to associate blood pressure, diet and lifestyle with heart health, the connection between the heart, mind and soul cannot be ignored. Initially, it was the heart, rather than the brain, that was considered to be the seat of mental processes and emotions such as anger, ambition, courage, valour, grief and pride. Recovering from PPCM, choosing to live stress free, to avoid negative people, to make an effort to spend quality time with family friends, and to enjoy the simple things in life, dramatically improves ones blood pressure and heart health.
March 2012 Update
My recent ECHO showed normal heart function and size. EF 50%. It was great news and strangely, I thought I would be more excited by the news but I think it was tempered by test results that showed elevated immunoglobin E that was 4 times what it should have been and my food sensitivity test results that showed that I have an immunological response to dairy, eggs, nuts and legumes. Although, I had already decided to go back to an Asian diet, the results gave me no choice. When you eat foods that cause an immunological reaction, the body produces antibodies and inflammation and these antibodies need to find a pathway and often that may come through in some form of allergic reaction like mucus in the nose, lungs, or in more severe cases appendicitis. Although the cause of PPCM is debatable, one of the factors for me was this immunological reaction to dairy that caused me to have elevated antibodies, add it to lack of sunshine, and zinc and the antibodies attacked the weakest organ, which in pregnancy was the heart (The heart medication stops the immune dysfunction because the antibodies decide to attack the meds and not the heart, giving the heart a chance to heal). Had I not got pregnant and developed PPCM, age plus an out of control immune system would have manifested itself in some other chronic illness later on that would have been more difficult to deal with and I would not have had the help to find the answers that I needed or the fetal cells in circulation that helped in the healing process. No matter how many ways I look at it, Jasher's life and his death saved my life and showed me a better way of living. I wish there was a way that both of us could have lived.
April 2012 Update
Another interesting and busy month. Life has become busier and busier and another interesting appointment with Dr. Katrina Watson. Dust allergy and dairy intolerance could also contribute to a high immunoglobin E count, so that is pretty challenging to work through. Still walking or bike riding each day but am not as vigilant on taking my BP records and a little sporadic on the supplement taking. In three months I go back for an ECHO and blood test for immunoglobin E and iron levels. so that will keep me on my toes and accountable. I am told the blood test numbers should be better but not to expect a return to normal levels, as these things take time. When I was in hospital for heart failure, I went through so many what ifs, and as the journey goes on, I have come to realize that so many things I thought caused me to have heart failure in pregnancy were not avoidable. It was years in the making and many factors that were out of my control, like zinc deficiency in the soil, that I had no idea would affect me and my family so much, and dairy consumption. Often it takes a major crisis to properly evaluate your life and see things that you would not have seen. To be truly honest with yourself, is a difficult thing to be, as it involves not only changing the way you eat and established habits but also a change in attitude, beliefs and relationships. Heart failure in Pregnancy has certainly taught me a valuable lesson in discipline and the importance of discipline in life and it has given me a deep sense of compassion for the sick, the grieving and the lost.
My husband and I started building together www.myheartsisters.com to raise PPCM Awareness and it is a fulfilment of a dream to create a site that would work with Facebook and allow the PPCM community a means to raise PPCM Awareness and support each other through story telling, sharing and information.
June 2012 Update
Almost a year ago I was diagnosed with post partum cardiomyopathy. and we had lost our eleventh baby. I was a woman who was very sick, confused and consumed by grief. Returning to the hospital today to receive my latest ECHO results, I was hoping that my heart was at least low normal. because I had felt that over the last few months, a lot less disciplined than I had been and the conversion to an Asian diet, came with a few unexpected consequences like hidden high salt consumption, so I actually felt that maybe I had compromised my healing. I had also been a little more sporadic on the supplement taking. To compensate a couple of weeks before the ECHO, I juiced vegetables and fruit with my champion juicer. ITo my surprise the results came in at 57%. So this means my heart is now not just low normal but perfectly normal. I still struggle to believe the results because I had psychologically prepared myself for 50%-52% but never expected 57%.
It was a good meeting with the cardio. Our meetings are usually brief and this time was no different but we both said what we needed to say and there was a sense of closure. He always had his doubts about the low dose of meds that I was on, but he compromised with me because it seemed to be working and both of us today, could finally say that it did work. He wanted me to stay on meds indefinitely but the compromise we agreed to was that I would stay on meds until I felt they were pushing my blood pressure too low and/or that we would re-evaluate in one years time. He also asked about future pregnancy and that really came from left field. My answer was very logical at the time.
As I left, the maze of what is Geelong hospital, I can remember all the conflicting emotions I felt when I walked through the birthing wing of the hospital after losing Jasher and today I walked through it twice without those same emotions. Hospitals are places of life and death and in facing death, you learn to truly live and feel. The person that walked in to that hospital last year was a different person that walked out today. I have a new heart, a new purpose and passion for life and the ability to connect to those around me, with compassion and love. My heart healed in so many ways.
Glory to God for he truly fulfilled his promise to me, "I am the God who heals you of all your sickness and all your disease"
July 2012 Update
Reflecting on the past year was more difficult emotionally, than I anticipated. It didn't help that I was sick from a cough and chest infection that just would not clear. I finally worked out it was a side effect of the Ace Inhibitor, which can also cause anemia. My iron results came in, and my stores went backwards (The ferrograd C supplements did not work out because it caused me to have sharp stomach pains). I was devastated and stuck until I worked out what I needed to do. I found some old SMS messages my husband had sent me while I was in hospital which contained some of the plans about what food we were going to buy to eat to keep my blood pressure down and those plans changed along the way but having a plan is important, as is listening to one's body and finding out what works. I would have continued with the ACE but my body, said it was time and left me no choice but to discontinue and suddenly, not having that safety net, was a lot harder than I imagined. While on both meds, my BP was everywhere, very high at times or normal. It was very sensitive to what I ate, stress and my breathing. I needed to go back to the beginning and actually understand what I did that helped me, in order to move forward and I hope it helps others too.
Diet: Natural diet, rich in fresh fruits, vegetables, good quality low fat protein, tofu, fresh vegetable/fruit juices, homemade bread, mineral water, rice, herbs, young coconuts, coconut, olive, rice bran oil, garlic, onions, spices. Low salt. No or limited processed foods. No excitotoxins, no aspartame, no fluoride. Organic where ever possible. Eliminated dairy and eggs, nuts, legumes because they came up positive in the food sensitivity blood test.
Digestive enzymes to aid in digestion. Liver cleanse. Healthy bowels equals healthy cells and organs.
Walking: Walking several kilometres each day. (Oxygenates the body, produces essential nitrogen oxide and stimulates the body's circulation and digestive system) Progressed from a few hundred metres to several kilometres and also did bikeriding and some running. Tackled hills and did several bush walks.
Yoga: Breathing, postures and meditation always brought my BP to great numbers.
Air: Lots of fresh, ocean breezes and deep breathing.
Sunshine and vitamin D supplements (vitamin D is essential to health)
High dose magnesium: eliminated palpitations. When the chemist gave me a low dose variety by mistake, I ended up in hospital with tachycardia.
Zinc: rebuilds the immune system. Zinc deficiency in the soil is widespread and the heart meds actually deplete zinc in the body, so it is important to replace but a little tricky because zinc competes with iron in the body.
CoQ10: Betablocker depletes CoQ10 and supplementation balances this out
Medication: Betablocker and Ace Inhibitor taken at the exact time each day. One in the morning and one in the evening. The occasional half water pill, if I had eaten too much salt.
Vitamin C, selenium, iron (natural), bilberry (eyes), high quality fish oils, spirulina, and b12
Stress: Minimizing stress and taking a more laid back approach to life, avoiding stressful people and situations. Quitting ebay auctions, which caused my heart to race incredibly.
Celebrating life and giving thanks.
Belief: is very powerful and on the cellular level, what you think attaches to each cell in your body.
Red blood cells live for about four months, while white blood cells live on average more than a year. The entire body is thought to replace itself over the course of 7-10 years. Scientists have found fetal cells that have healed damaged organs. Giving the body, the right conditions to heal itself, and the right ingredients and it will. Unfortunately, often our body compensates for imbalances until, it can no longer compensate and then we become chronically ill and it is then harder to get the body back into balance and often people do not get the right ingredients for their body to heal.
So, as I reflect on all these small things that together have helped me to heal, I am struck with awe and at how incredible the human body is. So many things we can take for granted. The food we eat, gets transformed in our bowels to living cells and we are able to think, move, speak, breathe, and so many of our body's organs work without us thinking. We breathe air and it gives us life. We drink water and it gets absorbed and used by our bodies and excreted. Life has a power of its own, and too often we do not stop to appreciate it and breathe in life. As I face the coming year, I know there are still challenges to overcome, lessons to be learned, sorrows and joys. Death is final but life is continuous and cyclic. There is no final chapter, or place where we can say, we have arrived. We can only look back and know that certain events and people were important and pivotal to who we are today. Shalom.
It's been a busy few months. I almost don't know where to begin. In November, my blood tests came back for low iron, low calcium and low vitamin D. It was frustrating because I had felt that I had been eating well. I met a woman who had thyroid issues and we exchanged notes about what we had learnt. She told me about how dairy and wheat could clog up the small villi in the intestines and prevent food from being absorbed properly. I looked into it further and found that the wheat grown in the last 60 years has four times the gluten in it. Here we were eating stoneground organic wheat made into sourdough bread and damaging our intestines with healthy food. The milk we were drinking, was compounding the issue and causing inflammation in our bodies because of the a1 protein. An inflamed bowel allowed viruses, undigested food to pass through and led to mineral deficiencies. I believed that we were eating the best organic produce money could buy and that would protect me from illness and yet it was the wheat and dairy in particular that was so damaging. Add into the mix, lack of sunshine and stress and it was a perfect recipe for chronic illness.
Going off meds, was not an easy decision and one I had to make alone because it was unfair to put the responsibility on my doctors. Though the ECHO had come back that my heart function, size and EF was normal and that I had recovered, I felt that something wasn’t right. My BP kept rising with the meds, I was dizzy, had palpitations, a cough and chest infection that would not go away. I felt like it was now or never and emotionally could not deal with continuing on medication after recovering. From there, I battled my BP with everything from eating foods rich in potassium and juicing, to doing daily bikram yoga (90 minutes of yoga in a hot room) for several weeks. I was religious with supplements and nothing really worked. My BP would go as high as 180/120 with no symptoms. I felt fantastic off meds, but my BP just would not behave itself. I was determined to find the answers and relieved that 6 months going off meds, my EF increased from 57% to 61%
I was actually half way through a water fast when I saw my cardio for the results. I had come across an article about fasting and high blood pressure and how water fasting and supervised re-feeding could lower BP to normal levels. ( http://www.vegsource.com/articles/goldhamer_high_pressure.htm ) I was hoping that a few days of fasting would have been enough that when I went to the cardio, my BP would behave itself but she read it, as 160/100. My heart though was strong and she said that the reason why my BP was low after I was diagnosed was that was my heart was weak but as I improved, my BP rose. Typically, I would have been given meds to control my BP. For me, losing Jasher and being on meds for BP was not something I could reconcile. I was now strong enough to water fast. I had read the Essene Gospel of Peace, in the first few weeks of being diagnosed and the wisdom contained in it about fasting and praying for healing had always played in my mind. I suddenly felt that everything I had done, with diet, yoga, and changing our lives as a family had lead me to the decision to water fast. I was aiming for 10 days but in the end, because of a family crisis, ended up completing 7 days of the water fast.
The theory behind water fasting, is that it gives the digestive system a rest and diverts energy to healing. The body reaches a point of ketosis where it uses fat for energy but also cleans out and burns up all the bad stuff. It was the most amazing experience. Two days into the fast, hunger ceases. My mouth had a foul taste in it with whitish paste. I had to shower often because of the smell. I could literally feel the toxins leaving me. I was exhausted and realized just how much energy goes into thinking. To help eliminate waste, I drank a litre of water with a level tablespoon of dissolved MgCl and that cleared out my bowels completely. I also had one fresh coconut water on day 2 and 3 for potassium. Each day I took my pulse, BP, and weight and by the fifth day, my BP had dropped to 137/91 and pulse 58 and when I completed the fast, my BP was 126/87 and pulse 71. Five days post water fast, and reintroducing with fresh vegetable juices, coconut water, sprouted legumes, salads and cooked vegetables, my BP is still as good as during the last day of the fast. My concentration improved and so too my clarity of mind and I needed every bit of it because I had to break the fast to travel to Melbourne for a family member who was in hospital for an obstructed and inflamed bowel. It was the first time, I had driven so far and I had an amazing amount of energy and concentration. The water fast allowed me to make the journey.
I truly believe that the digestive system is the key to healing. Fasting is a very powerful way of healing but it can be overwhelming in very sick people because detoxification is too rapid. Supplements and juicing can be a way of introducing nutrient rich food into the body but long term, the body needs to be cleared of the waste in order to function efficiently. Health is a daily thing and requires discipline. It is something that one has to seek out and own because you end up racking up debts that one day have to be paid. Fasting is one way of clearing that debt but the alternative can be operations, drugs and suffering. Alternative medicine can offer some relief but can also disguise the symptoms of underlying issues.
I hope that whoever reads my story will be blessed by it. We suffered incredible loss as a family but my life was spared. I have learnt to love more deeply and to appreciate life. I should not even be here but for the grace of God. Each day, I awake, I know the price that was paid to save my life and with all my heart, mind and soul, I will love, feel, breathe in and embrace the life that is around me with compassion and forgiveness.
So, it has been almost two years since being diagnosed with PPCM. Today is the second anniversary of Jasher's death. It sometimes feels like we are living a parallel life. So much good has come from so much tragedy. How can we reconcile the life that we are living now, without acknowledging the pain and suffering that we have gone through? Could we rewind the clock, and know and be all that we are now, without having lost all that we did.
In these last six months, I have totally eliminated all processed foods from my diet, the majority of foods that I eat are raw and the enzymes for digestion are complete and not destroyed by heat. I have adopted a plant based diet, completed a series of 3 colonics and follow up colonic while on a 7 day water fast and watched as impacted black waste left my body. I have learnt to drink more water. I completed a 30 day bikram yoga challenge, and by the end of it was able to do back to back classes totalling 3 hours in 40 degree heat easily. I have discontinued supplements and instead juice celery, spinach, beetroot, apple, oranges and carrots, and kombucha. I found some wonderful goat's milk and make goat's milk yogurt and cheese. I have learnt the value of sprouts as living foods and I have planted a vegetable garden full of greens. I continue to walk and bikeride and have high energy levels. I add fresh lemon juice and cold pressed olive oil to my salads. I recognized that undigested food causes great harm to the body and without proper enzymes, and poor intestinal health caused by wheat, excitotoxins, a1 protein in dairy, processed food, gluten, the body becomes clogged up. Toxins build up, poor digestion leads to mineral deficiencies and imbalances, the liver and kidneys become sluggish and inflammation causes disease in the body. Pregnancy accelerates the process of disease, because pregnancy is a time of great change and with stress, things can go terribly wrong very quickly.
In June, I was officially discharged from my cardiologist after an ECHO that showed my heart was unchanged snd normal. I have been off medication for a year and I am feeling great. I have have lost 12 kilograms, in a year and am now 57kg. I can walk in excess of 20 kilometres along a sandy beach without effort, bike ride 40 kilometres, and lead a very busy and full life. I have yet to test the limits of my fitness. I have learnt that fitness is more than having a normal EF.
Sometimes, it can seem that my updates are all about nutrition and this is because it has been a very core part of my recovery, both physical and emotional. The food that you digest, transforms into your living cells to become part of you. It is not burnt up but transformed. I don't often reflect on the very raw grief of losing a baby but more than anything his death has propelled me to seek life, not only in the food that we eat (by not consuming death) but in all the choices that we make. Life is a gift, to be treasured and embraced. In the words of a very wise and kind soul, who told me to continue to love my children, as I have always loved them, I have found unconditional love to live in this world, is to know the meaning of
“Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me”
and to forgive unconditionally, to have compassion and understanding, to seek for the truth and test everything that I believe or was taught was true for worth. I have learnt to eat living foods and to keep death away from me. To value all life as precious and to use my life as a gift to others; to worry less and to pray more. I have learnt to love those who hate me, bless those who curse me, and to pray for those who spitefully use or persecute me. I have learnt that though there is much sorrow in this world, we have salvation and deliverance through the living words of YHWH, that transform and give life. I have learnt that life does not come from death. Life comes from the Creator.
YHWH promised to give me a new heart and the heart he gave, was as He promised. "I will give you a new heart, and I will put a new spirit within you. I will remove the heart of stone from your body and give you a heart of flesh."
While it is impossible to separate Jasher’s death from the circumstances that led to my diagnosis and recovery. His death did not save my life. Listening and following the words of the living God, who created us, gave us life because if we had not listened and clung close to the Father, we would have lost everything. Satan comes to kill and to destroy. He uses death as a weapon against man but Our Father in Heaven, comes to give us life through his word, through the words of His Son, to give light to our eyes and joy to our hearts, that in our weakness, we are given strength, in our sorrows, we are given joy, in the shadow of death, we are given life. Through the power of prayer, we see deliverance.
I share the joys of my life, but very rarely do I speak of the suffering. Today, I remember Jasher. Allow me to cry, allow me the space without judgement to be and to feel. There is still a part of me that is missing because of Jasher’s death and one day, that part will return to me, and I will be whole.
This story and website are dedicated to our son, Jasher, who departed this realm on 10th July 2011. PPCM is a disease that brings immense suffering and is so treatable if detected early and can be so devastating if symptoms are ignored. I know that PPCM led to Jasher’s death and it would have taken my life too. The website is free for anyone to join and support. We hope that more people will know about this disease. It has been a way, we have been able to grieve, for the loss of our precious little baby boy, who we carry always in our hearts.