Why?
Friday 15th May, is Hyperemesis Gravidarum (HG) Awareness day. Why? Because not everyone has access to quality health care or treatments to be able to combat this illness. Because sometimes even those who do have access are met with ignorance, misunderstanding and indifference from those supposed to be helping. Because parts of the world that do not have adequate health care render women who suffer from HG completely at the mercy of this awful illness, which can lead to not only the death of their unborn babies, but also loss of their own life. Why? Because without adequate treatment and support HG can lead to severe dehydration, organ failure, cardiac arrest, starvation, infection, stillbirth or premature birth. Because it is NOT morning sickness. Because it is more than vomiting and nausea. Because the effects and side effects of HG can last well beyond the time of the condition itself, including anxiety, depression, Post Traumatic Stress Disorder (PTSD), permanent digestive malfunction, serious dental problems, organ damage, relationship and family breakdown.There are limited informative resources currently available regarding all things HG. Much good work is being done to improve on this. Some incredible women that I have come across on the online support networks that I am a member of (for those suffering or survivors of HG) are working tirelessly to increase awareness, educational resources, and raise funds for those less fortunate.
So today, I focus my post entirely on my own experience of HG. For this I have put together my own version of the 'ABC' of the Hyperemesis Gravidarum (HG) experience, although I have resourced many of these from other published versions, particularly a well known one written by Karen Jensen (www.teenlibrariantoolbox.com). Although I consider myself one of the very fortunate ones who has in the recent couple of weeks (as I surpassed the 15 weeks pregnant mark), had a reduction in the most severe of symptoms, enabling me to return to eating some limited 'safe foods', take in some fluids that have kept me out of hospital and off the IV fluid treatments for now, I remain on the medication. I am under no illusions that it may return with full force at any given time throughout the remainder of the pregnancy. It is amazing how I consider myself 'better', despite my ongoing heavy reliance on the powerful ondanestron (also known as zofran), my continued daily vomiting, relentless nausea, and the continuation of many of the side effects of HG that are likely to remain for quite some time.
The ABCs of Hyperemesis Gravidarum (HG)
Some of these only presented themselves during my worst time (labelled the 'death zone' by many) between 8-13 weeks pregnancy, however many continue to endure despite a small & temporary respite from relentless vomiting and lack of food/liquid intake that I'm currently experiencing. Those who have lived HG can probably relate to some or many, probably even worse so than me.
Everything in my body aches. Everything. The joints ache because of how unwell I am, and probably due to the dehydration and lack of movement (plus I have rheumatoid arthritis that can flare up sporadically). The muscles ache from lack of use and conditioning, as it is an effort merely getting out of bed or the couch, so any form of exercise is out of the question. The stomach aches from constant retching and heaving. The head aches from dehydration and exhaustion. Groan..
B: Bathroom
It is ridiculous how much time gets spent in a bathroom. The one at home has easily become the only place in the house that I spend any lengthy amount of awake time in. I have heard stories of women dragging mattresses into their bathrooms to sleep on as they are unable to leave for long enough between vomits. Then, when you are actually able to leave the house, you spend an unhealthy amount of time being forced to source available bathrooms for the inevitable vomiting that will occur, and is inescapable no matter where you are. I have developed such an intense dislike of my bathroom, that I now actually need to employ relaxation techniques and deep breathing to avoid the now automatic reaction of nausea and heaving that occurs whenever I enter it.
C: Constipation
Not often readily spoken about in usual circles, constipation is however widely referred to and discussed on HG online support group forums. Mainly because it is such a massive issue that it is unavoidable to bring up at some stage. Majority of HG sufferers are not only prone to constipation due to the reduced food intake and nutrients, plus inadequate fluid hydration, but we are also required to live on a cocktail of medication that tends to have the unfortunate side effects of worsening constipation. Added to this combination is the tendency for normal pregnancy hormonal changes to also render pregnant women susceptible to constipation and/or hemorrhoids, and it is a recipe for disaster. It is only while sitting on the loo for 1-2 hours at a time, tears rolling down my face in frustration and pain, that I have fully understood the terrible experience of this condition. Mention the words 'zofran poo' to a HG sufferer and they will immediately understand the struggle.
D: Dehydration
At its worst, HG rendered me completely unable to keep down fluids. Not even water. This very quickly leads to dehydration and is one of the most dangerous and serious problems associated with this condition. Headaches, weakness, dizziness, heart palpatations, low (or in my case high) blood pressure, inability to pee, worsened constipation, ketones in your pee, extreme thirst, reduced functioning and risk of total shut down of kidneys and liver are all part of the fun and I had all of them. It is during one of my early obstetrician appointments that I was alerted to how serious this really is, when not only was I not allowed to leave at the end of the appointment until they had tested my urine (which I was having trouble even being able to supply for them), but they admitted me into the hospital, and I spent the next 8 hours hooked up to IV fluids. I was advised by the doctors that although the reduced food intake could be tolerated, its the dehydration that is the greatest concern. I have spent many hours in hospital dealing with it since then.
E: Electrolytes
You lose them, cannot get enough of them in, and quickly learn how an imbalance in electrolytes wreaks havoc on the body. Electrolyte imbalances can include decreased sodium, potassium, chloride and magnesium levels, which can obviously create some awful consequences. I will never forget the frustration I felt at being completely unable to ingest anything that could give me a skerrick of an electrolyte replacement. I deluded myself that I would get something out of the small window of time that I seemed to be able to stomach the occasional slurpee, however I knew that I was kidding myself. It was a joyous day a couple of weeks ago when I was able to stomach a powerade sports drink for the first time. These days I struggle to do so as I cannot tolerate anything with any decent level of sugar in it, but the oral replacement of elecrolytes has kept me out of hospital and being treated for severe dehydration.
F: Fainting
Once considered one of the telltale signs of pregnancy in the early 1900s, fainting has stood the test of time as an affliction of pregnancy. Dizziness, light-headedness, low blood pressure, low glucose levels in the blood can all have a part to play in causing a fainting spell. So it makes sense that when you cannot eat, drink or stand up without dizziness, that fainting will happen. HG can create a whole new level. I have fainted many times during this 'journey' so far; when I first attempt to get out of bed, standing up from the couch, from throwing up so forcefully that it makes you black out, and the latest is a time limit of about 20 minutes that I can stand in the one spot before I can guarantee that I will pass out. Im not keen to don a helmet in my day to day life to avoid injury from this, so I am forced to take everything VERY slowly.
G: Goals
These have changed significantly. I remember declaring confidently to my husband, at 4 weeks pregnant, that despite our history of miscarriage and high risk of loss, that I was going to enjoy every minute of this pregnancy. Ha ha ha.. Yep that was a good one. Original goals such as not putting on too much pregnancy weight, keeping active, eating healthily, and the usual pregnancy related mantras have all been thrown out the window. Now my goals include, getting through a shower without vomiting, standing up without passing out, eating a piece of food - anything, getting through a day at work without needing to spew in the staff toilet or put my head down on the desk during the shift. My how my goals have changed.
H: Hunger
I thought I knew what it was like to be hungry. Now I have truly felt hunger. When you are desperately hungry, dreaming about food and teetering on starvation, but know that you simply cannot eat anything, it is torturous. I reached a point where I would dream about food at night, and wake up shaking, nauseas and starving. I would sometimes just cry myself to sleep at night, my stomach in twisted knots of hunger and a feeling of weakness and desperation like nothing I had experienced before. It has made me think more often about the plight of eradicating world hunger and the lives of those who live with famine and starvation. We should not live in a world that allows this to persist. It is simply too cruel. At least my plight is temporary and can be treated, many in the world do not have this luxury.
I: IV fluids
The lifeline of a HG sufferer. At my worst, I was admitted to hospital 2-3 times per week for long stretches at a time to treat my dehydration with IV fluids. Each visit consisted of often multiple attempts by the nursing staff to find viable veins to insert a cannula for administering of IV and other medications, as severe dehydration often made my already thin veins difficult to find or use. Anywhere between 2-4 litre bags were then administered to rehydrate me (mainly 3-4) and I was not allowed to be discharged until the ketone levels in my pee had reduced to a satisfactory level for them to release me. Boredom, exhaustion, and long stretches of wasted time filled these visits, yet without them I would be simply too ill. I don't think I fully comprehended the seriousness of my dehydration until they began gathering repeat blood tests and talking about problems with my kidneys and liver. I am so grateful that I live somewhere where I have access to this treatment in our healthcare system.
J: Justify
As HG is so poorly understood, whenever you attempt to explain it to someone, there is often a strong feeling that you need to somehow justify why you are so unable to do things. As HG can so often be written off as ONLY 'bad morning sickness', it is sometimes implied in this ignorance that you are somehow weaker than other women who just 'put up with it' and that you should be sucking it up more effectively. Not only does this make you feel even worse, but it can create feelings of guilt, isolation, feeling misunderstood, and frustration and anxiety regarding the lack of understanding of what is actually going on.
K: Ketones
Its amazing how savvy you get about medical terms such as ketones. Simply, ketones are made when the body starts breaking down fat and body stores for energy when there is not enough glucose either from carbohydrates in the diet or within the body itself to convert into energy. Its a sign that the body is under stress and struggling to cope. I quickly learnt the colours on the dip sticks used to test the pee to see what levels of ketones were present. I also learnt that unless my level could get down to number 1 (a lighter colour) than I was not going home from hospital. Sigh.
L: Love
HG can strip you back to such a basic level that you feel incapable of experiencing the warm, fuzzy, loving bond between yourself and your growing baby. Come to think of it, it can also strip you of these bonds with your family, your partner/husband, and in some cases your own children. I am fortunate in that I find solace and comfort in thinking about my baby to be, which enables me to feel more positive and get through some of the tough days. I am also fortunate in that the tough times during this pregnancy and prior to it have only strengthened the love between my husband and I. Without his love and support, and also of those close to me, I don't think I would be able to have coped as well as I have (and I would argue that I have been borderline at coping on many occasions).
M: Motivation
This takes a beating. It is hard to be motivated to think about anything other than the next five minutes when you are bent over a toilet bowl for the 20th time in a day, and completely devoid of positivity and the ability to look to the future with any clarity. On the flip side, motivation is not so much absent but adjusted instead. Motivation to get out of bed for the day, to change into new pyjamas, or to get through an entire shower standing upright can be what pushes you through an HG day. Sometimes it is tough to hear "It will all be worth it at the end.." when you are only 10 weeks pregnant in dire straits completely unable to consider how you could possibly get through another 30 weeks in your current condition.
N: Nerves
Whether you relate your nerves to your anxiety levels or fear of the future and the continuing HG battle or a more physically specific nerve effect such as restless legs, or sciatica pain, somewhere, somehow HG manages to affect these. I find that when I have thrown up everything and there is nothing left, not even bile to bring up, my body tends to go into meltdown mode and my nervous system goes into hyperdrive. I shake and tremble and sometimes gasp for breath. My poor husband initially thought that I was potentially having a fit when he first came across it. Now we know that it is just a physical reaction to being so depleted.
O: Oesophagus
The poor oesophagus really cops a beating in HG. The relentless throwing up simply tears apart the lining of the oesophagus. Stomach acid and bile can cause extensive damage and it is common for the effects of these to wreak havoc on the poor system. I will consistently begin to throw up blood when the oesophagus is particularly cut up, always following a spate of empty stomach vomits involving bile and stomach acid. I also have a constant feeling like I have a hairball or something stuck at the back of my throat that I have been informed is probably a throat ulcer from all the vomiting. It is not pleasant and definitely a nasty side effect.
P: Psychological effects
There are many. HG takes away so much of your life and ability to engage in normal daily living that it can leave you listless, isolated, and utterly depressed. The psychological scars have been known to stay well and truly beyond the end of the actual HG condition, sometimes for life. Depression, anxiety, even post traumatic stress disorder (PTSD) are all common following this terrible illness. I felt the gnawing of depression clipping at my heels during those dark weeks, and I constantly battle with the anxiety and fear of a resurgence of my symptoms on a daily basis.
Q: Questions
So many questions. Questions from professionals and health practitioners about symptoms, about your pregnancy, even the repeated questions about your name, date of birth, patient ID number and allergies information. When you have been admitted over 10 times as I have and have multiple nursing staff administering various medications and IV fluids at any given time, these questions are a frequent occurrence. Then there are the questions and uncertainty that HG sufferers ask themselves.. Will it ever end? Will it stay for the whole pregnancy? Can I make it? Is my baby ok? Can I even attempt to eat that? Should I risk it? Where is the nearest toilet/bathroom/spew receptacle? Why does my stomach not realise there is nothing left in it while it continues to heave? There are never any clear answers
R: Relationships
HG has an enormous capacity to put a strain on a range of relationships. It can be tough on marriages and between partners, on the mother and her other children, between family members, friends, work colleagues, even on the friendly interactions you may have with your local chicken shop worker. HG can strip you back to a shell of the normal social person you were. When also in the depths of illness and often depression, it can be too painful to even talk, let alone engage with your wider circle. You are incapable of doing much other than curling in a ball on the couch, or bed, or bathroom floor, willing it all to be over. This does not fare well on your relationships. Neither does the inability to work, help with domestic duties, cook, clean, look after children, go to social events, or even leave the house. HG is awful in its isolation, but it also renders you needing to isolate yourself to survive, so it is a catch 22. Add in a combination of the condition being widely misunderstood or minimised as morning sickness and it can cause problems amongst the people you normally get along well with.
S: Shower
Who knew that having a simple thing like a shower could be such a massive ordeal? I used to take for granted the ability of a long, hot shower to make everything feel good and to be a great comfort. HG has morphed having a shower into a stressful event, filled with dry retching or actual throwing up, lightheadedness and dizziness, difficulty standing up or sometimes even lifting your arms above your head to wash your hair. That is before you throw in the sudden aversion to the smell of the soaps or shampoos that send you to vomit town. I have found this particularly cruel in my day to day life.
T: Triggers
HG sufferers often talk to each other about the various and changing triggers that send the stomach into meltdown and the head down the toilet. A trigger can be a food or drink itself, the minute it is consumed, you fall prey to the awful clutches of a spew attack. It can be the smell of a particular food, drink, or anything really. I still feel like passing out when I even think about the smell of popcorn and am unsure if I'll ever be able to go to the movies again unless this subsides. Triggers can also develop when associated with some of the times that you have felt at your most deathly ill. I have found walking into a particular room to become a trigger, or even a song, or something on TV. These things in itself are very debilitating and can stay long after the HG condition has passed.
U: Ultrasound
For me, ultrasounds have become a positive light in an otherwise dark tunnel many times. As a high risk pregnancy patient because of recurrent miscarriage, I have had many ultrasounds along the way even by only 17 weeks pregnant. Despite the anxiety and fear leading up to an ultrasound whether or not everything will be ok, once I can see the baby on that ultrasound screen, I am reminded exactly why I am going through this and why I need to keep going. Seeing our little one moving around and hearing the sweet sounds of the heartbeat have been very important for me.
V: Vomiting
Well yes this one is obvious. HG and vomiting go hand in hand. The word Hyperemesis itself actually means excessive vomiting. Approximately 80% of women suffer from some level of nausea and vomiting during pregnancy, lamely named morning sickness. That sucks on any level. HG brings that to a whole new level. At my worst I was vomiting every 15 minutes, over 30 times per day. It is impossible to function and keep your body healthy with that many vomits. I have heard cases of even worse, some poor women suffering 100+ vomits per day. Fortunately for me the cocktail of medications that I am on were able to eventually reduce the vomiting from 30+ to a more bearable 6-10 times, however until I could manage to keep down some liquid and food, I was still in dire straits. I still rely on the tablets to get through the day, and although the vomiting is reduced to 2-3 times per day right now, the nausea is still relentless. I expect to vomit for the entirety of my pregnancy, I just hope and pray that I manage to stay out of hospital and maintain some level of functionality.
W: Weightloss
So apparently my fears of putting on too much weight during the pregnancy were unfounded. Instead I found my weight spiralling downwards during the first trimester. 10kg down from my pre-pregnancy weight, it has been tough on the body to be quickly losing weight at a time that you are expected to be gaining some happy kilograms. Many sufferers of HG face an interesting reaction from others when they end up losing significant amounts of weight due to how ill they are. Comments from others claiming they are jealous of your pregnancy because you are losing weight (careful what you wish for), or being told how good you look throughout the pregnancy because of the weight reduction despite feeling like death can actually make the whole experience confusing or more difficult. I have managed to put on just over 1 kilo during the 2nd trimester so far, which brings me 9kgs below my starting weight, this is something that I am celebrating because it means that I am keeping down enough nutrients and there is less chance of retarding the growth of my baby as the pregnancy continues.
X: X marks the spot
This is a difficult letter to use, unless I've been recently playing a xylophone or needed an x-ray. X marking the spot can refer to parts of the body effected by HG, which in itself an extensive list, or it can refer to all the places that you have thrown up or been effected by HG, also too numerous to mention.
Y: Yucky
There is so much that is disgusting, gross and yucky about suffering from HG, it's really too numerous to mention. The human body is an amazing machine, yet it is also a pretty disgusting one when things are going wrong. Never before have I discussed bodily functions more than during this pregnancy, and I really thank god that my husband seems to be able to handle it ok.
Z: Zofran
An anti emetic (anti vomiting) medication also known as ondanestron. It is often prescribed to those going through chemotherapy to help stem the vomiting and nausea associated with its harsh treatment. It is also used in cases such as HG to attempt to get a handle on multiple vomiting episodes. It does not work for everyone, thank goodness it has been fairly successful for me. It does nothing to prevent my nausea, yet it was able to reduce my vomiting spells from 20+ per day to 5-10 times. Now that I have a small amount of respite, I am finding that it keeps my spews to a manageable 2-3 times daily and enables me to function a lot better, and eat and drink some things during the day. I am not sure if I will be able to stop taking it at any stage through the pregnancy, yet despite its side effects, it has been an absolute godsend and a life line for me.
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