My Hyperemesis story - CNN iReport

As many Hyperemesis Gravidarium survivors, I have been closely following Princess Kate's pregnancy, hoping it would raise awareness of this awful disease.To tell you a little bit about how little is known about HG: my first experience with HG went undiagnosed. It was my first time going through the suffering, the isolation, the misunderstanding and the feelings of failure that it creates. I spent my first pregnancy feeling like a total wimp, struggling with so called 'morning sickness' when others somehow just dealt with it and got on with their life. I was regularly sent to the ER for rehydration, where all doctors and nurses agreed that I should be happy, and tried to reassure me that this constant vomiting was a sign of a healthy pregnancy. I could write a long essay about well-intended people suggesting crackers, bananas or ginger... but today I choose to focus on my second and recent pregnancy, my pregnancy with diagnosed hyperemesis.So here we are in February 2011.This time, we know what is coming; we have spoken to doctors beforehand and are as prepared as we can be. But can one really be prepared for hyperemesis? We now have a 4 year old to care for, and no family around. My doctors seem informed and understanding enough. It fools me into thinking it will make a pregnancy manageable. I hope and pray I will not have Hyperemesis again.I cannot take a pregnancy test yet, because it has not even been a month, but my nightmare has begun. The dreaded nausea, the dizziness and the constant vomiting are back. I cannot drink, let alone eat anything. I am talking myself into being strong and positive. But deep inside I know this really is the start of a 6-month ordeal.My doctors say they have this great medicine, Zofran, which will get me rid of the nausea. Beginning of March, my pregnancy test is positive, I am starting the antiemetic medication. We are pregnant - I am sick and terrified. My trips to the ER for rehydration begin, as well as multiple prescriptions to ease my suffering and dehydration. I am now throwing up between 10 and 20 times a day. I drink. I throw up. I eat. I throw up. I go to the bathroom. I throw up. My throat hurts. My back is sore from the intensity of the vomiting.I keep calling my doctor's office, posting on different websites and researching online to get advice. It seems I never quite get the help I need. I cry a lot. Everyday. I feel helpless and I fear for my own life. It is now the end of March and I am unable to get out of bed. My blood pressure is severely low and I am scared.I am unable to leave my house, unable to pick my daughter up from school, unable to cook a meal.It is the end of March. After multiple phone calls and visits to my doctors' office, I finally get approved to receive home IV for rehydration and medicine. I am relieved. Hyperemesis has already taken everything I had out of me and I know that once the dehydration cycle starts, it is very hard to reverse it. The nurse comes over late at night. Having a professional care for me when I am so sick and vulnerable feels extremely reassuring. But little do I know, I am already severely dehydrated. She is unable to insert the IV. She cannot find a vein. She keeps poking my arms and later my hands in search of a vein. She does not know what to say. In despair she calls for a colleague to help. Her colleague finally gets the vein. I am in so much pain.But the vomiting still won't stop. I am starving. I am dehydrated. Every time they need to replace the IV, it is the same struggle to find a vein due to dehydration. I feel desperate. The increases in dosages and the new med-trials are scary. I know I am carrying a baby... but it feels completely surreal. I am carrying a baby I feel no excitement or love for. What am I doing?I try finding new doctors for second opinions, and hopefully real help. But I can't be on the phone or talk. It makes it harder. I can't get in a car to go to an appointment. I don't feel like they understand the severity of my symptoms. And then, I am finally hospitalized for the first time. I hear my doctors talk about severe malnutrition and dehydration. I start to think, maybe there is hope. Maybe someone will take this more seriously.I ask about disability but my doctor tells me he does not 'like putting people on disability so early in the pregnancy'. I am very confused. I am worried about our finances, about my family, about my health, about the baby.They install a PICC line in my arm. A PICC line (peripherally inserted central catheter) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition - TPN).I am finally getting some nutrition through the PICC line. I ask if this will help with the starvation, but the TPN does not travel through my stomach; the only option is to eat. But how?My daughter asks whether I am dying. She will not come close to me with all these tubes connected to my body.I am now on a combo of medicine: Zofran, Reglan, Pepcid IV and TPN to name a few. I choose http://www.empr.com/zofran/drug/1495/ - http://www.empr.com/zofran/drug/1495/ - not to read the prescriptions in too much detail. I am on medicine for cancer patients, feeling little to no relief. I fear for my life and I am terrified of all the possible impacts on our unborn child.I have a really hard time sleeping with the PICC line in, my heart beats irregularly when I am not lying on my back. I am quickly losing muscle from being in bed all the time and trips to the toilet are a task I dread.I am sent home after about ten days. The vomiting is a little under control. My sister and my husband are now experts at caring for me. They diligently flush my IV. They worry about air in the tubes while changing my bags of fluids and nutrition. It is an ordeal. One of the few contacts I have with the outside world is Josh, my caring nurse, who visits my home several times a week.The hours, days and weeks go by. I am unable to do anything other than sleep and stare at my white ceiling. Sounds, light, smells make the nausea so much worse. I am unable to read, watch TV, have a phone conversation or do anything to escape this nightmare. I can't stand the idea of my daughter coming home from school. She is like any 4-year old, active and noisy, and the thought of having her around is unbearable. I feel extreme guilt. What kind of mother does not want her daughter around?I am now in deep depression. And the nausea and vomiting have gotten worse again. I head back to the ER.This is my second hospitalization. I notice my hospital gown is different from everybody else's. I am under suicidal watch. I have no desire to hurt myself. I am tired, drained and I don't want to be pregnant. I hate every minute of this pregnancy. I feel angry and frustrated. I cannot go to the bathroom on my own and am constantly watched. Some nurses are very sweet. Others less. Most talk about God. I wish I did but I have no faith. And no, going to church will not help. I am sick and no one can help. I feel so misunderstood.I am now over 6 months pregnant and oral medicine is finally enough to keep the vomiting under control. I am starting to keep some food down but the nausea won't go away. I am exhausted and want this to end.But it has become more bearable. I now throw up only in the morning. I wonder if that's what 'morning sickness' feels like. Awful, but manageable. People keep saying the 3rd trimester is tough. For me, it's by far the best.November 9th 2011, my baby boy was born. It was love at first sight.The joy and excitement of pregnancy were http://zofranrecallcenter.com/zofran-lawsuit-and-settlement-for-using-zofran-for-morning-sickness/ - zofran birth defects webmd - stolen from me. But I do feel tremendously lucky. Our story has a happy ending and not all Hyperemesis sufferers have this chance.The sentence I heard thoughout my pregnancy "It will all be worth it." Yes, but that is not a fair thing to say. It should not be this way...This pregnancy was a traumatic experience. I want more research done.