My Life as a Research Subject: Part Four (Or, You Have an Incurable Disease. Oh, wait. No, You Don’t.)

I’ve been telling you about my participation in a clinical research study for a medication to prevent menstrual migraines.  At first, I thought it was going to be easy money. Then I met Dumb Nurse, and things went downhill.  In Part Three, I told you the events that led me to feeling done with this study.

And yet, I wasn’t done.

Oh, unfortunate me.

The third week of October, I got a couple of calls from the research center.  Since I didn’t have or want any further appointments with them, I did not answer and let the calls go to voicemail.  The messages stated that they had lab results back that they wanted to give me.  I thought they had given me all my lab results — I’d had high liver enzymes and then they re-tested and everything was normal again, and they’d given me those results already.  So twice I ignored the messages.

On the last Wednesday of October, I got yet another call from the research center.  Wanting to get them off my back for good, I finally answered.  The girl said that they had lab results in, and the doctor wanted me to come down and discuss it with him.

I said, “No, I’m not making any more appointments.”

She said, “Um… well, the doctor really wants to see you about these results.”

I told her to send them to my family doctor and I would review the results with her.  I had an appointment in two days anyway.

The girl said, “Um… well… can I just give you the results?”

Big sigh.  “Fine.”

“You tested positive for Hepatitis B.”

Shock and silence.  Then, “How in the world would I have contracted that?”

“Well,” she said, “it’s contracted through bodily fluids.”

Now, I work in a doctor’s office, but I have almost no contact with patients.  I haven’t had a blood transfusion.  I haven’t gotten any tattoos or had any acupuncture.  I don’t do drugs (so I don’t share needles), and my husband and I are monogamous.  So I basically have zero risk factors for contracting Hepatitis B.

The girl continued, “The doctor wants to see you back for treatment.  He’ll treat you for free.  And if it makes a difference, the employee you had a problem with previously no longer works here.”

My head is still spinning.  “I need to think about this.  Send the records to my family doctor and I’ll discuss it with her,” I said.  And have her re-test me, I added silently.

So, like all patients do these days, I Googled Hepatitis B and confirmed that I had no risk factors.  Then I started thinking… I had a vaccine for some kind of hepatitis about ten years ago.  Which hepatitis was that?

After doing a little more internet research, I determined that it was indeed Hepatitis B that I had been vaccinated against.  And I know that when you have a vaccine, sometimes those antibodies stay in your system and cause false positive results on blood tests.  Chef has experience with this because he had a TB vaccine as a child.  He was born in Germany, where that vaccine is common, although it is not given in the U.S.  So every time he gets a TB test, the results show he’s positive.  It’s a real pain in the neck.

But Hep B vaccines are relatively common these days, and I would certainly have thought that a doctor’s office would know how to interpret the results — or at the very least, ask the patient if she had ever been vaccinated.  They never asked me that question.

That is, not until the phone rang again.

It was the same girl from the research center who had called about 45 minutes earlier.  “Um… I was just looking at your results again, and, um… have you ever have a Hepatitis B vaccine?”

Why yes, yes I have, I assured her, in a much nicer tone than I was feeling.

“Well, these results may be because you had the vaccine.”

“Yeah, I finally figured that out on my own.”

She began to apologize.

I said, “Look.  I’m not necessarily upset with you, but this just goes back to the problems I’ve had with your facility all along.”  And while I didn’t use the word “incompetent” I’m pretty sure I gave her the idea that that’s the word I was thinking.

First she tried to shift the blame, then she tried to tell me how she “went the extra mile” to look into it more after she’d called me.

And I said, “Well it would have been really nice if someone had done that before you called me and I freaked out for an hour.”

She apologized again and made some excuse and said, “Well, that’s why I called you back,” as if that was going to make me ever-so-grateful.

I said, “But you don’t call someone and tell them they have an incurable disease before you have all the facts.  That is not okay.

After a stunned silence, she apologized again.

“Thanks,” I said, and I hung up.

I don’t know that I’ve ever been so angry.  I had become worried — for my own health and the health of my husband — because they didn’t do their jobs before calling me.

Two days later, I went to see my family doctor who reviewed the results with me in detail, taking a lot of time to look things up to make sure she had the information correct.  She showed me what she had found and went over the results carefully, making sure I understood.  She assured me that the reason the test (one of three tests, actually) came back “reactive” was because I’d had the vaccine.  I have new-found love for my doctor.

And I will never participate in a research study again.

Ironically, as I was writing this post, that stupid center called me again. It was the center director who said that the doctor was there and wanted to talk to me about my lab results.

Now, in case I haven’t made it clear, I HAVE HAD IT WITH THIS RESEARCH CENTER.

So I said, “No.”

“Well, he just wants to go over the information with you,” she said.

“No!” I repeated.  “I don’t want to talk to anyone from your center again.  I’ve already gone over the results with my family doctor who assured me that the reason the results came back the way they did is because I had a vaccine.”

“Well, that’s why we were calling.  He wanted to go over that with you.”

“NO,” I said again.  ” You don’t call people and tell them they have Hepatitis B without having your facts straight.  I don’t want you people to call me ever again.

Oh yeah.  I said “you people.”

And then I hung up on her.

Now, are we done?  I certainly hope so.  I really don’t want to write Part Five in this series.

So the question: Was the money worth it?

H- E-Double Hockey Sticks, no.

Sorry for my language.  I know my nieces and nephews sometimes read my blog.  But this time, it had to be said.

Okay.  I’ve got that out of my system.

And thankfully, I don’t have an incurable disease.


5 Comments (+add yours?)

  1. Tracy
    Nov 16, 2010 @ 12:08:45

    How ridiculous. I’m glad you finally had it out with them; they way they handled things was unacceptable. I’ve had my fair share of “experiences” with people in the medical profession, and it really amazes me what some of these places can get away with.

    I’m just glad you are okay, albeit a little worse for wear re: your stress level. 😉

  2. riTa
    Nov 16, 2010 @ 23:16:12

    And maybe they will conduct their practice more professionally now for having been confronted. Let’s hope so.

  3. Amy
    Nov 17, 2010 @ 13:43:24

    Good for you, calling them “you people”! I had to do the exact same thing to the pediatrician’s office yesterday and then went over and walked out with all the kids’ records. No doctor/research project/money is worth such abuse.

    • Karen, the Small Town Runner
      Nov 17, 2010 @ 14:02:23

      Thank you. Sorry about your pediatrician experience. Grrrrr.

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