Being a Bad Patient Saved My Life, Part 2

Part 2: Intrahepatic Cholestasis of Pregnancy

Click here if you missed Part 1.

Before I went through all of this I had the very innocent idea that doctors knew what they were doing and were, therefore, authoritative and trustworthy. It was okay if they said it was okay. That idea had now been thrown completely out of the window. They obviously did not know what was going on with my health and if anyone was going to figure it out it would have to be me.

The first thing I did as a bad patient was to call my doctor’s office and demand a copy of every single paper in my file.

The patronizing voice on the phone responded that if I filled out the appropriate paperwork to request it, they would be available to me within three to six months. I was racing the clock knowing that I was already pregnant and the countdown to stillbirth had begun. I did not have that kind of time.

Forget asking. I now DEMANDED a copy of my medical file immediately. After an hour of talking to anyone I could get to listen to me make this demand on the phone and emphasizing my rights to my own medical files, I received a copy the next day.

Those files and google became what my life revolved around. Like the most dedicated medical student imaginable, I scoured every word and had notes and definitions written all over them. I called the doctor’s office repeatedly and asked the nurses what certain things meant when I couldn’t figure it out on my own. I wanted to know exactly what was in those files as well as any doctor that would look at it.

Once I had my head wrapped around the medical terminology I started looking at some of the symptoms just like a doctor would, to try and deduce what disease they might match. I spent countless hours on google looking through credible sources of medical papers with any string of symptoms I could think to put together. It was all a dead end as far as I could tell.

Finally, I stepped back. I realized that searching through the files wasn’t leading me where I needed. What was I missing? I decided to forget what the doctors had written and think about what I had been saying. Where were the unusual symptoms I had been mentioning? I couldn’t find a complaint about itching anywhere.

Not in one place in that encyclopedia-sized file did I find the word itch.

A quick google search for itching in pregnancy, about four pages into the result, and I found my first lead. There was a minuscule forum of mom’s discussing it and one name I found in it stuck out.

Intrahepatic Cholestasis of Pregnancy.

Apparently, this disease is caused by and only occurs during pregnancy. The flood of additional hormones in your body basically clogs up your liver function causing bile acid to back up into your bloodstream. The bile acid causes you to itch. The itching is worse at night and in areas that have poor circulation such as your hands and feet.

I knew in my gut I was onto something. My babies didn’t die because “these things just happen;” something was wrong. I printed out research and information only from credible sources such as major hospitals, medical journals or studies and equipped myself to go into battle. Bad patient versus doctor.

Armed with my newly discovered information, I went to my first doctor’s appointment with my new high-risk pregnancy doctor.

As a bad patient, I took my chart off of the door on the outside and into the room with me. A few moments later the nurse walked in annoyed and asked me why I had my chart. As the doctor and interns walked in behind her I explained that I would like to see the doctor take the appropriate time to read it instead of grabbing it and scanning over it during the four steps it took to walk in the room.

I deserved to know that he fully understood my history before he treated me.

I filled in a few gaps and answered a few questions and then handed over my research and said, “I’m pretty sure that I have this disease. You need to test me for it.”

The doctor and interns in the room looked at each other in amusement.

Doctor acting as if he knows better.
The doctor and interns in the room looked at each other in amusement. Source:

“There is no way you can have this; it is primarily found in people of Chilean descent, and from the look of your blue eyes and blonde hair I am going to assume you are not Chilean. You can’t go by everything you read on the internet”, the doctor said.

Thankfully I had done tons of research to educate myself before presenting this and had come prepared.

In an overly sweet voice, I mentioned a medical journal as I handed him a copy I had printed out. “It says here that it can also be found in people of Scandinavian descent. You may assume my blue eyes and blonde hair make me Scandinavian.”

Then I went in for the really bad patient throw down: “If you test me for this and I don’t have it, then you can all just laugh at the silly girl who believed stupid things on the internet. But, if you don’t test me for this, and I DO have it, won’t it mean another dead baby? It might be better for you just to prove I’m a silly girl.”

The atmosphere change in the room was palpable. The amusement had clearly left. The doctor stammered that it was an expensive test and a few other useless deterrents but in the end, agreed to do it.

Several days later, I was at work and my doctor called. He apologized for calling me at work and said that he simply had to speak with me immediately. In an incredulous voice, he announced, “You were right! Your test came back positive. I can hardly believe it. You need to come in as soon as possible. We have taken your case to the lead doctors in the hospital. Only one percent of pregnancies ever tests positive for this, it’s so rare that I thought there was no way you could have it. We have a lot of research and work to do.”

Click here for Part 3

Read more about Nikole here and check out her blog.

Check out Nikole’s Part 1: A Terrible Itch—And Unspeakable Loss

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