Wednesday 21 April 2010

My Horrible Monday

I am going to share with with you a little nightmare that we experienced Monday ALL DAY LONG. It involves the current level of government involvement/ineptitude in health care, a freaked out pregnant woman, a supportive husband, and a somewhat confused Dr. Office's staff. I will also state for a necessary spoiler, I was the victim of lab results being read incorrectly. A screening test that was mishandled. The end of the story is happy-ish.

My Monday started off on Friday, little did I know. Friday around 5:15 PM I missed a call. Left on my voicemail was a chipper message for me to please call the Polk County Health Department. Curious, I did, but it was after hours so I left a message.

Monday the chipper woman calls me again, stating she is returning my call. Well, I was returning hers actually. She started questioning me about a blood draw I had done April 8th at Mercy. I didn't. I had it done that day at my Dr.'s office. I was totally confused. I asked her why she was asking me all these questions since I live in a different county. She ignored me and went over where I had tests done, asked me where, asked me if I intended to continue treatment in Polk County. I responded that pregnancy is not a disease and treatment is not what I call prenatal visits. There was silence. Then she said, "You have Syphilis." Um. NO I DON"T. I said it must be a false test result and then I questioned her as to why she had my confidential and private medical results and why my doctor or midwife wasn't the one informing me. She told me I was a public health risk and I needed to go through them for any further tests. I said that I would go to my midwife since this was an obvious mistake or lab error. She told me to deal with reality. I told her the reality was that I had been in a 15 year long monogamous relationship and only sexually active the last 11 years (how long we've been married) and there was no way for me to have any sort of STD. She berated my husband and questioned mine or his fidelity. I was floored. She then instructed me to listen to her and deal with the facts. I hung up.

Sobbing I called my husband. Sobbing is an understatement. I was crying so hard he could barely understand me and I was shaking and seeing little sparklies whenever I opened my eyes. I tried to focus, center myself, stop crying. He left work and drove the hour home right away.

I prayed. What my little talk with God assured me of was that I did not, do not have Syphilis. I don't. I never have.

I got myself calm and I called my midwife who was not available but her nurse said they had the results, they were still deciding how to tell me since it was so out of place. I asked questions she said she'd call me back after she talked with the doctor and found some answers for me. 3 hours later I called her back. I demanded a new round of labs. I informed her of my research that morning that false positives were common in women and even more common in pregnant women and based on that a positive result should be confirmed before scaring the daylights out of a pregnant woman. She then told me, when I insisted again that it was a false positive or a lab mix up, that all of that was in my head and I needed to deal with the data and the reality of this lab result. She said the County CASEWORKER hadn't called her back to instruct her how to handle further testing. !!!! A caseworker, a government employee, had my private medical files and wouldn't give them to my doctor, just yet.

Blood pressure spikes, crying resumes, pretty little sparklies. Sobbing. Calming myself with prayer once again, God reassured me that I DO NOT HAVE SYPHILIS, that I trust my husband with all that I am, and neither one of us has ever put us at risk for anything even remotely related. I've been tested with both other pregnancies, by the Navy, by Planned Parenthood and he's been tested with every blood donation. Calm for the storm. My foundation is secure. Prayer lifted me out of the blood pressure spike.

Chad called the doctor 5 minutes later. The doctor said lots of things about state law, government policy, and the disease and dormancy and contraction and that the office did not actually have the results, had not seen them at all, since they went to the County or State instead of back to them based on the result. !!!!

20 minutes later the midwife called me and apologized. She finally had the lab results in hand and looking at them could confirmed that I DO NOT HAVE SYPHILIS. Just as I was telling everyone all freaking day long. Based on the lab results that were done, the original results that the same medically untrained government caseworker had looked at, my doctor and midwife determined that I DO NOT HAVE SYPHILIS.

"I know that. That's what I've been telling everyone all day long." I said.

So that's the good news.

BUT...the midwife said the biological marker that confused the untrained caseworker and/or the lab tech was indicative of an autoimmune disease and in fact a serious thing and that I needed to come in for more blood work to rule out or identify the cause. Could be any number of serious things including Type 1 Diabetes, thyroid disfuction, Lupus, or NOTHING at all.

She stayed late at the office (with a different nurse) so I could drive in and give the blood for the next round of testing right away. That at least allowed me to sleep Monday night. She hugged me. She said she gave the Department of Public Health a good talking to. She explained to me again what these additional tests were looking for, how the markers were read, and what would happen next in my care plan if any of them, or depending on which one, come back positive. I would be transferred to the care of specialists. No need to speculate about the health of the baby until we know exactly what is going on.

So I am left waiting for the next round of results.

And trying to figure out how to get the county to remove my name in their register of STD's since it was a test result interpreted by an someone who didn't know what they were looking at.

So my blood pressure is not good but better now that I am not freaked out crying. Chad has been wonderful.

And I am left with the question...why exactly is a medically untrained government employee being handed my confidential medical records? And then why was she then given the power to withhold them from my own chosen medical provider, for any length of time?

Why was I put through this nightmare? For a moment, remember that this same system, possibly the same medically untrained caseworker is also notifying people who are really infected, possibly rape victims, as well as others with false results. Her tact and people skills were zero. She caused real physical harm to me and possibly my unborn baby. Stress like that is not good. Blood pressure spikes like that can be deadly.

So, I am healthy and the baby is fine, but I am still a little scared and angry. You know?

8 comments:

  1. How horrible, Danelle! The law gives them the right to manage certain diseases at a government level, but it certainly could/should have been handled better. How stressful!!

    And it can't be easy waiting for the further test results. I have two autoimmune diseases (and having one makes you more likely to have more). One is no longer a big deal, one is. Hang in there.

    (and not every autoimmune disease, even with pregnancy, requires specialist care. obviously, you'd want to have someone knowledgeable about whatever it is as an ADDITIONAL care provider, but there's no reason a midwife can't do prenatal care. although the hospital midwife group might be prevented from doing so by their own internal rules, I guess.)

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  2. Thanks Sarah, for your additional details. I am worried about it but handing the worry over, as much as I can, to God right now so I can function and eat and sleep.

    I'm not using the hospital midwives, I'm using our FP and his wife (midwife). The same rules might apply though or she just may feel that I need to be seen by someone else. I am considering checking out the specialists and midwives in Iowa City.

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  3. Man - we are going to get some crazy google hits on this post.

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  4. hey MP. this is alot like what happened to me, expect it was a post it note that got attatched me my file. a note telling the nurse to call about schedule hysterectomy. i had just had an emercency c-section, so needless to say my reaction was close to what urs was. "why am i getting this information from you!!!???? where is doctor ruby and why didn't he tell me when i was there yesterday??!!!" as always you are a strong woman and will overcome this.

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  5. Ugh, that is AWFUL! Some people just aren't compassionate enough to do any job dealing with people. Make sure you write them, government workers are hard to fire, just maybe you can help them out :) I bet you get p.o.'d every time you think about it too.

    Also, your midwife sounds wonderful.

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  6. Wow!! I am soooo sorry.....hang in there...so glad you and God have a good thing goin.

    Pamela

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  7. I would be fit raving mad if I were you.

    This is unacceptable and I am pretty sure you have serious cause for complaint.

    Glad you are better about it now.

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