CMV – the Scariest Disease You’ve Never Heard of.

I haven’t posted much this week because I’ve been running around between doctors appointments.

About 2-3 weeks ago, I had a really bad sore throat.  I thought I was getting the flu and was grateful that I wasn’t in my first trimester when a temparature can be really bad for baby..

Strangely though, unlike the usual sore throat > sneezing > stuffy nose> congestion > cough progression that I have always had for any cold or flu, the soreness completely disappeared two days later. The only symptom I was left with was fatigue that hasn’t gone away.

Fast forward to a week ago when I feel that I have a slightly swollen gland on the left side of my neck.  I didn’t think much of it until it got so big and so sore that you can see it bulging if I just tilt my head a bit and so sore that it hurts when I turn my head.

Due to all of the moving around and switching of health plans we’ve done in the past couple of years I don’t really have a primary care doc. (I had one picked out who’s name was on my insurance card, but I’ve never seen him. )

Last Saturday, the gland became large enough that I realized I really need medical attention in case it is some sort of infection. I called the primary listed on my card – he’s not accepting new Aetna patients. I had an appointment scheduled to see my OB on Wednesday, but didn’t want to wait that long. Knowing that my OB appointments are like 2 minutes long, I thought maybe they could squeeze me in Monday instead of Wednesday…

I call the receptionist and she says “swollen gland? That’s not pregnancy related. Call your primary care doc or go to a clinic.”

Bitch.

So I call Aetna, the only urgent care clinic that accepts Aetna is in NJ.  Off to Jersey I go. A negative rapid strepp test later the doc tells me to start antibiotics (just in case even though he thinks its probably viral.) He says hell call with the results of a more thourough throat culture (which turned out to also be negative.)

Two days later on Wednesday, I have my OB appointment. The doc says “wow, that’s big” and that he’s not worried about the baby, but that I really needed follow up care because “that thing is the size of a golf ball.”  To his credit, he did offer to help me get an appointment with a primary if I couldn’t find one to see me soon.

I did end up being able to get an appointment at the office of a doctor I’d seen once about 10 years ago. Other than being a little wacky, he at least took the issue seriously and ordered a CBC, thyroid tests, mono and CMV titer. I went to quest this morning and had the blood drawn.

My dad calls me this afternoon and says he thinks I probably have CMV, its super common and I’ve had all the symptoms.  He said he was sure the baby was protected though because isn’t that what the “umbilical cord” is there for? (Dad, I think you mean placenta.)

I of course google CMV during pregnancy. Wow, I wish I hadn’t.

According to CDC, CMV infection occurs in about 1 in 150 babies born in the United States, some of whom develop hearing or vision loss, mental disability or other problems. It is the leading infectious cause of birth defects and developmental disabilities in the United States, according to the CDC.

1 in 150! And yet, I bet your OB never talked to you about CMV (according to MSNBC, 40% of OBs don’t). Even though its probably 10 times more likely than say Downs, which is something they routinely recommend screenings for.

Needless to say, I am terrified.

I called the doctor that ordered the bloodtest and asked the receptionist how long the results would take. She said usually about a week for bloodwork from quest. A week of sleepless nights.. so I called my OBs office, a little ticked off that the OB never told me (even though I had the symptoms) that there was a potential (however small) of having something that could be bad for my baby to see if maybe they would re order the test stat.

I start crying on the phone with the receptionist, so she puts the doctor on call on (who I’ve never seen.)

In a pretty bitchy way she tells me that it’s so rare that I shouldn’t worry about it because there is no treatment for it anyway and that I should just stay off the internet. Funny, because everything I’ve read says its NOT really that rare and that OBs are the ones that maybe should get ON the internet. Besides which, telling an expectant mom not to worry about her unborn child is really quite futile, and in my opinion, shows a complete lack of compassion and sense of reality. Thanks for nothing.

Defeated but willing to give it one more try to get the order changed to stat I call the primary care docs office again. This time, I ask to speak to the doctor who I saw yesterday. They take down my name and number and say the doctor on call will call me back.

Some other person calls who can’t even spell CMV (clearly not a doc, but I can hear the doc in the background).  I guess she mistakenly tells the doc its mono I want stat? Because the doc (I think it was the doc) gets on the phone and says don’t worry, I don’t think of mono when I think of mental disabilities and babies. No, NOT mono, CMV! Oh she says, I mean yes CMV. Ok, clearly she hasn’t done her homework either.  She does tell me that the results can’t be ordered stat because its a culture anyway, and that it should be around 3 days or so.  Again I get the “don’t worry about a disease you probably don’t have” lecture. Its too beautiful a weekend she says.

Clearly she’s never been a mom, or pregnant. Or if she has, she has amnesia.

If you are still with me, you may be wondering why I’m posting this.  It’s partly because

A) I am upset and hormonal and needed to get that off my chest

B) I am half hoping that if I write about it, the test won’t come back positive for primary exposure

C) Because if you interact with children on a regular basis (daycare worker, or mom!) and are pregnant, you really need to know about CMV and its dangers and take extra precautions. Because if your OB is anything like mine, you won’t hear it from them.

Links:

http://www.wearsthebaby.com/cmv.htm

http://www.americanpregnancy.org/pregnancycomplications/cytomegalovirusinfection.html

http://www.msnbc.msn.com/id/22827257/

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sairs says:

I have cmv…. i have to have an ultrasound on Tuesday to make sure my baby is ok but apparently if things don’t look good they are going to take amnotic fluid to test…. it’s really terrifying especially when you have to wait…. my midwife read about cmv off a fact sheet as she didn’t know anything about it so she was unable to answer any of my questions also they were all surprised that my doctor even ordered the tests in the first place…. they should test for these things regardless.

tryingin2007 says:

WOW! now that IS frightening! I’m seriously hoping this is just a scare. please update as soon as you can. I’m thinking of you and your little boy.

Anu says:

ohh it’s such a bad thing, I can imagine what are you going through. It may sound a little weird but keep calm and have faith in almighty.

Anu

Sarah says:

I’m sorry you are recieving such frustrating care. It can be a serious thing in pregnancy and definitely should be treated as such.

I was tested when we were doing testing for IVF. My results showed antibodies and an active infection. My doc couldn’t tell if it was primary or secondary but we were advised to wait a few months to TTC. I haven’t been tested again but we didn’t get pg for another year as luck would have it so I’m hoping that since I had it long before I got pg it won’t be an issue.

I hope your tests will shed some light on what is going on! Good luck!

ariana says:

Thanks Farah, I can use all the good vibes that I can get!

Michelle, wow, how scary that must have been for you in the first tri. Yes, you are right about the primary exposure which I should have put in the post (I was too much on a rampage!) To be clear, I’m worried about primary exposure only due to the acute symptoms I had so recently.. it could be that I had already been exposed earlier in life and it flared up thanks to the whole pregnancy depresses your immune system thing. Or it could just be mono…or it could be nothing! But its really hard to stop worrying anyway isn’t it?

Wow, I can’t believe we have almost the same due date!!

Michelle says:

Ok first off, it is a little crazy that we have alot of our tastes in common. I love both of your blogs. Every time I show my husband something new for the baby, you post it on your blog (gapbaby bedding, green toys from toys r us, etc) But also we are having a little boy due on Aug 7. Then, when I logged on today I saw that you are having a CMV scare too. In my first trimester, (when I was fatigued beyond belief) I found out that my sister had CMV. I had just visited her before she found out. So, I immediately called the dr to order a test (after I scared myself senseless on the Internet) For me, everything was ok… I am one of the rare ones that has never had it. Most people have (i think like 80%), and if you have had it then, the birth defects are minimal (if any) than if you contracted it for the 1st time during your pregnancy. But, you are right to be worried. I had an insensitive nurse as well. And, waiting for the results was murder. I hope everything turns out well for you. Keep us posted. Sorry about the really comment.

Farah says:

You poor thing!! WOW – yah love the “don’t worry” advice. LIKE that’s a possiblity! I am going to hope with you that it pans out to be nothing at all. I have nevr heard of that. Thank you for educating me as well. I am thinking of you and baby!

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