An Unconditional Love Story brought to you by a rare disease w/ Hyperemesis Gravidarum Survivor Guide.
Introduction
Hi. Simply, I’m Sam.
In the last 30- something years, “eventful” is definitely the correct term to describe my life. Adulthood for this goofy tomboy started as nearly a 400 lbs woman.
Yup. That’s right, and I’m here to tell you how I went from a four-hundred pound obese individual into an eighty-eight pound lifeless soul nearly dying of…. pregnancy.
I’m a pretty decently educated tech strategist, scientist, and nurse. From 2017 until late 2019 I fought for my life, almost dying from Hyperemesis gravidarum and complications following. Seems nearly impossible with my education, current medical advances and technology. My HG case was so extreme, several individuals and organizations have asked me to share my experience. I’m finally speaking out and I’m here to be an advocate for others currently suffering, or still living the devastating effects left behind by a very rare and misunderstood disease.
It gets messy. But… Let’s do this.
If Projectile Vomiting was an Olympic Sport….
First, weakness, nausea, vomiting for a few days. Then weeks. A month, two months….
It was after 10 solid weeks, friends and family started noticing everything I ate or drank came back up...
I. Mean. EVERYTHING.
As a nurse we are told to tell our patients to get one of those little medicine bottle caps, fill it with 30 cc’s of water and take it every hour. With such a small portion, it’s virtually impossible to throw up. After minimum life sustaining amounts of water wouldn’t stay down, I knew I should reach out, but hesitated, convinced it was an autoimmune flare.
Ignoring concerned statements, “It’ll pass”, I told friends.
It passed. Wait… sorry. I passed out. That’s what I meant.
I was carried into ER after collapsing. The ER nurse helped me onto the scale. 22% of my body weight dropped. Nurse went through my chart. Checked my vitals.
After they put an IV in my neck, yes in my neck… we term it a“JV line”, they were able to draw lab, pump some fluids, administer anti nausea medication, and they’d ‘be back’ with results.
The doctor enters looking mildly annoyed. “It looks like you have yourself a case of Hyperemesis gravidarum, you said you weren’t pregnant. Patients with autoimmune complications like yours can’t TYPICALLY get pregnant.”
“Uhhh… I can’t get pregnant. What’s Hyper hmmm a hum a hummus gravity? I’m a nurse, stop making crap up. This isn’t funny, I’m really sick or I wouldn’t be here.”
I partnered with GraceMed and The March of Dimes to teach, collect data, and save lives with the ‘Becoming a Mom’ Program in previous years. I had never heard of Hyperemesis gravidarum or ‘HG’ for short, apparently it’s very rare.
Let’s Get “Medical”. What is Hyperemesis gravidarum?
Help Her is a nonprofit geared to help those with Hyperemesis gravidarum. They state “HG is a severe form of nausea and vomiting in pregnancy.
HG is generally described as unrelenting, excessive pregnancy-related nausea and/or vomiting that prevents adequate intake of food and fluids. If severe and/or inadequately treated, it is typically associated with:
- loss of greater than 5% of pre-pregnancy body weight (usually over 10%)
- dehydration and production of ketones
- nutritional deficiencies
- metabolic imbalances
- difficulty with daily activities
HG usually extends beyond the first trimester, which is unlike ‘morning sickness’. Some have resolved or ‘lessened’ symptoms by 21 weeks; however, it can last the entire pregnancy. Complications of vomiting (e.g. gastric ulcers, esophageal bleeding, malnutrition, etc.) may also contribute to and worsen ongoing disease.
Imagine a disease where “slightly off” smells and noise triggered hours of relentless projectile vomiting. That was my HG life.
Diagnosing Signs and Symptoms include;
- severe nausea and vomiting
- food and odor aversions
- documented weight loss of 5% or more of pre-pregnancy weight
- dehydration, headaches, confusion, fainting
- Jaundice, pale skin (pallor)
- Extreme fatigue (malaise)
- Loss of skin elasticity
- Secondary anxiety/depression
- ketones in urine, decrease in urine output
- electrolyte imbalances
- excessive salivation (ptyalism)
- a rapid heartbeat (tachycardia), low blood pressure (hypotension)
- In some cases, affected individuals may have a distinct odor to their breath (ketonic odor)
- Symptoms associated with the disorder may subside and recur (“wax and wane”) resulting in affected individuals being hospitalized more than once during their pregnancy.
NORD states on their RareDiseases.org site, “Quality of life is also affected. Individuals are often unable to work, complete daily household tasks and routines, care for young children and, in some cases, may elect to skip social activities and functions. Persistent and severe nausea and vomiting associated with hyperemesis gravidarum may put a strain on various family relationships as well.”
Treatment Methods
As a scientist, aka ‘nerd’ I enjoy gathering EVERYTHING I can about a topic and becoming as much as an expert as possible before making a decision. When it comes to educated treatment options for Hyperemesis gravidarum, THIS is an article I don’t think ANYONE should overlook. The contributors to the publication are gifted beyond my describing ability, as they’ve spent tireless hours compiling research and medical data. Within this document there lies nearly every option recommended by professionals.
Hyperemesis gravidarum Treatment Method Charts
*NOTE These current medications are NOT medical advice. See a specialized health care provider for appropriate treatment options.
I’m Always Happy but My Heart and Esophagus Hurt.
When asked what Hyperemesis gravidarum is, I tell people my experience was; vomiting to the point of near death, until receiving major medical intervention.
My pregnancy resulted in zero maternity outfits. No pregnancy photos, except those taken from the hospital, where my picc line is visible. I ended up on home health services, in my bed at my mother in laws house, praying just to get to the next hour when my anti nausea medication would kick in.
My husband says he was advised on three separate times, by different hospitalists to have an abortion or possibly face losing both his wife and his unborn child.
I had very little family and support. Too depressed, stubborn and desperate I refused to face ‘reality’ and lived nearly total isolation for what seemed like eons.
Even after being maxed out on medications, I still struggled a great deal with my disease. Then… just like THAT…
CURED. It’s OVER!
The ethereal understanding every Hyperemesis gravidarum sufferer holds onto more tenderly than the rarest of CryptoKitties, is the victory of resolved symptoms when pregnancy ends.
Most women enjoy their favorite foods almost instantly after expelling the bundle of joy your body was ‘allergic’ to. I know I did…
Just like THAT!
All the symptoms of Hyperemesis gravidarum vanish.
It’s hard to grasp.
Some women leave the hospital with only remains of the disease in forms of horrible nightmares. Other’s face treatment for malnutrition, GERD, Ulcers, and other complications. Some women I’ve known, have been buried by their families. There’s also a death toll for unborn children, we will never be able to imagine. But here I am… alive. My child is alive and well, too.
Hyperemesis Aftermath.
My son’s first birthday brought tears of joy and pain. The day before he turned a year, I was still struggling.
My Doctor of 25 years, “Your highest weight was….? Hmmmm. Records show 177.8 cm (That’s 5’10, Americans) & 168 kg (370 lbs).” She looked at the scale and back at me. She repeated.
“Currently, 43kg… I thought there was a mix up pounds to kilograms conversion. I was hoping you weren’t REALLY only 97 lbs. Your blood pressure is really low, you think this is just damage from Hyperemesis gravidarum? I’ll be honest, we need to check your kidney, liver, & heart functions. You’re dangerously thin.”
One year aftermath: Weak, pale, hair and nails falling out and breaking off. Diagnosis of ‘Starvation & Dehydration”, “Acid Reflux”, “GERD”, “GI Complications”, “Multi-Stomach Ulcers”, “Bleeding Intestinal Ulcers”, “Hyperemesis gravidarum, unresolved”, “Lupus & Rheumatoid Arthritis” “Anemia requiring iron and blood transfusions”, “Low Bone Density”, “High Risk for Infection and Injury”
Complete strangers feel compelled to encourage me to eat. My family and friends make comments about eating ‘bacon’ or ‘cheeseburgers’ not understanding. They can’t help it, HG last left me closely resembling a skeleton hanging in an underfunded public school.
Instead of celebrating victories publicly, I quickly “closed down” emotionally and started struggling in silence after being accused of having an eating disorder by those unnecessarily providing ignorant opinions on my physical appearance.
2 Years out, FINALLY a Real Survivor.
Happy Second Birthday, to my littlest best friend in the world. This is certainly a celebration.
It took 23 months after I gave birth to *mostly recover from Hyperemesis. I’m still getting iron transfusions and repair procedures for stomach and intestinal ulcers,but here I am- 120 lbs. Size 4; cheeks full, hair shiny, a smile and new appreciation for life.
Hyperemesis gravidarum tried to kill me, so full of strength, I fought back. I named my son, Zuri, which means ‘strength’ in Hebrew. Post HG complications, I physically was able to hold my strength in my arms, so I could continue to fight for my life.
Happy Birthday, my Beautiful Boy!
HG Hope & Cope Guide for You and Yours.
Obviously, being condemned to a bed, hooked up on continuous IV’s, and facing everyone’s false or personal opinion, there’s a major physical and psychological toll HG Warriors struggle with. So, how will you survive? What’s to come? What’s there to be afraid of?
“Starvation begins when an individual has lost about 30% of their normal body weight. Once the loss reaches 40% death is almost inevitable.” Source: Time magazine, November 11, 1974, cited in Pojman, Paul; Pojman, Louis (2011). Food Ethics. Cengage Learning. p. 128.
I read things like this, and look at myself in the mirror. 46% of my body mass total lost. Before this disaster, I spent my spare time rock climbing, traveling, played/coached multi sports, belly dancing, competed in 5k’s, ran businesses, volunteered nearly daily, was at endless social functions- Now, I’m grateful if I can walk around the grocery store with my infant that weighs more than a third of my total body weight. Despite my excellent sense of humor, this disease isn’t a joke.
Here are a few tips I have to help with your HG battle.
1. Say GOODBYE, FAREWELL to unnecessary stresses in your life. Cut out negativity!!!! NOW. Do not listen to that friend that is always complaining about how bad her hair is….
You’re going to puke your baby out and stress does nothing but consumes your time while worsening symptoms. (No, you can’t medically give birth this way. Please do write it in as your preferred birthing method.)
2. Do not listen to the negative criticisms of others unless they pay your bills, write your scripts or they’re holding your hair back as you vomit. I am not being dramatic when I tell you the opinions of others have literally cost precious time, family members, friends, a means to make money, AND worsened my health, while lengthening my recovery time.
DO NOT LISTEN TO UNNECESSARY CRITICISMS AT THIS TIME!
Do you know the exhaustion of carrying ⅓ of your weight around on your hip with a spinal injury is like? It’s hard, and I can’t do it without help. No one has walked in my shoes, and no one else is walking in yours!
There’s no shame in having struggles.
3. Join a Tribe. There’s support groups lead by strong women I’ve come to know, one titled “Hyperemesis gravidarum; The Aftermath”. I’ve personally met other women with Hyperemesis gravidarum, it helped save my life.
One friendship was formed because a fellow local with the disease gave me her doctors information and I was able to get a picc line and treatment, which saved me and my son’s life. (Thanks, Jenny!)
4. Get smart. Becoming an expert should always be your goal in all you attempt. Educating yourself will not only allow your needs to be better met, it will be helpful when you have to make difficult decisions with your health care team.
Fun hg fact!
Some women find relief mid pregnancy. Many have ‘fluffy’ days aka “less-sick” days. (These are the days we try to binge eat!)
5. Hire an EXPERIENCED TEAM of professionals. Untreated, or under treated HG patients face an extensive recovery in relation to the damage done. Upon seeking treatment for a rare and complicated disease, never attempt an individual not willing to collaborate with experts.
6. Document EVERYTHING. Keep a journal. Know your medications. Hyperemesis gravidarum is like a lot of things in life. It has a “song”. It’s a terrible country song about your pickup truck blowing up and your dog dying, but you’ll notice rhythmic patterns in your disease.
I could drink fresh juice made with alkaline water after my phenergan bolus at 11am. It was a ‘safe’ time. Most of the nutrition I retained was during this time period, if I had not written down each time I ate, took meds, used the restroom, or vomited; I wouldn’t have recognized a lot of issues that were treated by my specialists.
7. Take your medications when they’re ordered. Do not skip unless your medical provider agrees.
Trust me on this, I’m a nurse.
8. Do not hire and pay medical workers insane amounts of money to turn around and ignore their advice. WebMD is a tool. Honestly, as a nurse, I’ll admit, when a patient said they “did some research and WebMD says…” I cringed and knew I would have to spend the next two hours of my life explaining anatomy, physiology, pathophysiology, pharmacodynamics, pharmacokinetics, and why it’s wise to take the path the licensed medical professional team has chosen.
Side note: Do NOT drink your own pee for a cure because someone on Facebook told you it worked for them. Just because someone has a degree does not make them intelligent. Get an EXPERIENCED medical TEAM.
9. Practice self care. I prayed, studied and meditated. Your days will pass more quickly if you put your thoughts and focus into achieving a goal, rather than thinking “I won’t survive.”
10. Don’t punish the ones you love. YES, it’s frustrating to be ill for a long period of time. Pregnancy is 40 weeks on average, recovery is 8–12 weeks for NORMAL birth, a complicated pregnancy may result in a loss of a year or more of your life. Screaming, yelling, picking fights, blaming, bullying, arguing, shaming, giving guilt trips, or other forms of ‘punishment’ towards anyone taking care of you will not be in your best interests.
11. Treat depression. If you’re vomiting “your life away”, you’re going to be sad. It’s okay. Just ask for help. Don’t get it? Keep asking. You’re not alone. Find that person who has time for you. Sometimes, it just takes a little searching on your end. You’re a survivor and you made it this far… if you need someone to carry you to the finish line, that’s OKAY.
I luckily had a few good friends and a supportive partner. They were my depression medication, but you may need more. There’s also no shame in this.
I have an online following of 75k. I posted a ’10 year challenge’ photo and got a backlash of nasty comments on my ‘eating disorder’. My inbox FILLED with people making hateful, hurtful comments. My career suffered, I got extremely upset and I told my doctor I needed something short term to help with the sadness this disease causes.
LASTLY
12. Keep Calm and…… The only goal is to see the face of your healthy child. That, in itself is a worrisome process for a healthy mother, add Hyperemesis gravidarum and it’s a freaking ‘Freddy Krueger’-nightmare of epic portions.
I know this is cliche, and I HATE cliches… but keep calm and take a deep breath. It’s going to be okay.
You’ve already thought about losing that child, or you may have already lost one, two, three…
There’s a magnitude of failure with Hyperemesis gravidarum no words can express. Further, there is no tool in existence to measure the depth of agony the soul exerts when a parent loses a child. Please know, calmness of the heart and mind will ease pain just long enough to get to the next moment.
You may find breathing and remaining calm are the only things you can control. This is a good thing. Meditate and be appreciative of each nanosecond. Concentrate on blesses. Bask in the idea of not being in control of this. It’s not ALL bad, even if that’s difficult to see.
Remember; Figuring out how to secure the rest of your basic needs may be a challenge, but you always have control over “taking a step back” and breathing.
A Special Thanks to You.
If you took the time to read this this, it means you’re suffering, or you love someone that’s very ill. I wish you a pregnancy of epic amounts of food, no puking, healthy weight gains, great health and beautiful babies. Don’t do this alone.
Call to Action.
Are you an Hyperemesis gravidarum sufferer? Have a friend or family member that is? Your story needs to be told.
Are you fighting for health and family?
- I’d love to hear your story.
- Can you relate?
- Did your doctor tell you Hyperemesis gravidarum wasn’t “that bad?”
- How do you feel when other women post their ‘belly’ photos, or talk about ‘morning sickness’
We are traveling the world teaching children financial literacy and rewarding kids for altruism!
Want to join?
Let’s Connect
Sources:
8 Things You Can Say to a Hyperemesis Gravidarum Sufferer
Hyperemesis Gravidarum — NORD (National Organization for Rare Disorders)
