Raise Your Voice

Find Your Voice and Raise It

May 15, 2020, will mark the 3rd annual International Hyperemesis Gravidarum Awareness Day. Events are being planned around the world to increase awareness and support, because while we know that this is not just morning sickness, the rest of the population needs to know too. This year’s theme is “Raise your Voice; Hear Us! Believe Us!” I, coincidentally, wrote the following blog before that theme was determined, so while events for the special day will be broadcast through the virtual world, here is my advice on ways you can raise your voice during your time with Hyperemesis Gravidarum (HG).

Hyperemesis Gravidarum takes away your life, or at least the life you knew prior to getting pregnant. Even though it drains the energy from your body, do not let it silence your voice. 

Literally utilize the authority you have to use your voice!

When it comes to HG, very few women instantly have support from their social network and medical team. To begin, make a list of the people who can actually help, keep the list accessible, and give yourself permission to accept their offer to help or to ask for help when needed. If you do not have family, your family cannot comprehend your situation or they do not live near you, think about who else you can count on. 

During my first HG pregnancy, my then-husband was deployed to Norway to do cold-weather training with the US Marine Corps. While I had a job, I had not lived in the area long so I did not have anyone with whom I could ask for help in my physically desperate situation. Once I became completely debilitated, it was actually my husband’s classmate and his wife who drove me to the hospital to get rehydrated, and then I stayed with them until my husband returned from his deployment. Additionally, it was my coworkers who both encouraged me to see a doctor and convinced me that I had more than standard morning sickness. My family, who lived on the other side of the country, assumed I was simply exaggerating my “morning sickness.” Even if they understood, I doubt they would have been able to stop their life to ensure I was staying hydrated. My story is not unique, and countless women have told me about their near identical experiences, fighting to stay hydrated and finding unique ways to avoid isolation.

Even more important than your social support is using your voice with your medical team. I say “team” because there is almost always more than one medical professional involved during your care during HG. At least there should be! Most women have their obstetrician and within that practice are the technicians and office staff. Do you spend hours in the front office or exam room waiting for your appointments? Are you one of the lucky ones with a home health benefit, where a nurse comes to check on you at home? When you’re in the hospital, either in the ER or admitted as an inpatient, do you know you can ask for a case manager to help you with communicating with your insurance company?  A social worker might be available to offer resources regarding paying bills and childcare if you have other children. Your medical team might include:

• Your primary care doctor
• Your obstetrician 
• Other obstetricians that work in the same practice
• A midwife
• A doula
• A registered dietician or nutritionist 
• The office staff who handle scheduling and insurance billing 
• A home health nurse 
• An urgent care or emergency room
• A telehealth doctor 
• Your pharmacist, either at your local pharmacy or through a mail order or delivery service

One reason we don’t question our doctors is that we just don’t know what questions to ask. Here is a list of questions to have available when it comes to talking to your medical providers about hyperemesis gravidarum:

• Does your doctor’s practice follow a treatment algorithm? If they do, then know where you are in the algorithm and what’s next in line to try if your current medications are not providing relief. If they do not follow a protocol, then share the HER Foundation’s algorithm with them: https://helpher.org/tools/Downloads/Treatment%20Planning/HER%20algorithm%20final%20refs.pdf.
• If your medications are providing relief to your nausea and vomiting, but the side effects are interfering with your quality of life, ask if there are alternative medications to try. For example, I was given phenergan during my first pregnancy, and while I was grateful to have short periods of time where I was not vomiting, I was spending that time asleep due to phenergan’s side effects; therefore, not having an improved lifestyle.
• What’s the easiest way to reach you if I have a question?
• Where do I go if I need medical help when the office is closed?

Years after being malnourished during my three experiences with hyperemesis gravidarum I became a pharmacist. I can still remember clearly my lecture that taught us about enteral nutrition and total parental nutrition (TPNs). I was amazed to find out that there were alternate ways to receive nutrition during pregnancy. These methods do come with risks and challenges, such as the discomfort of a nasogastric tube (NG tube) or an infection where the tubing enters the body, so they might not be right for everyone, but I should have at least been offered a discussion about it. Learn from my experience and be sure to ask about alternate nutrition and balancing electrolytes too.

Know what services your insurance covers. Questions to ask include:

• Can you change to another obstetrician or medical practice who has experience handling HG cases? If so, do you need a referral?
• Does your insurance cover home healthcare for infusions or check ups?
• Where should you go for rehydration? Are there infusion centers that would cover the treatment, while offering less exposure to infectious diseases? The last thing an HG patient wants to do is sit in an ER waiting room full of patients with potentially contagious diseases!
• Who handles your prescription coverage? If a doctor prescribes you medicine and your insurance states that it is not covered, clarify if the MD can complete a prior authorization to get it covered or if that’s an absolute no. If a prior authorization (p/a) will suffice, ask what the copay will be. If it’s an absolute no, then ask if there are any other medications in the same pharmaceutical class that are covered. 
• Understand your prescription formulary. This is usually divided into three tiers (lowest copy to highest) and should be available on the company’s website. For US military families, Tricare makes it very easy for active duty and dependents to figure out the cost with the tricare formulary tool.
• Does your insurance cover telehealth visits? This can be especially useful when needing refills of a medication.

As so many of us have experienced, HG often lasts through the entire pregnancy, and some survivors are even left with years of mental and physical challenges. If you are currently suffering from HG, use your voice to benefit yourself and your family. If you’re a survivor, tell the world on May 15, 2020! #2020HGvision  #HGAD2020  #HGaware2020!