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Bennett
I wasn't planning to get pregnant; in fact, I didn't even think I could get pregnant. So when I arrived in Manila for an extended business trip and began to experience a lot of nausea, I assumed it was just an adjustment to the local cuisine. Eventually I got suspicious though and took a pregnancy test, just to rule it out. Wow -- what a shock that was. I was about 7 weeks along at the time. I decided not to tell anyone until I could see a doctor back in the US. Unfortunately, I began to hemorrhage a few weeks later (still in Manila). I went to the ER, and was admitted to the hospital there. A sonogram revealed some intrauterine bleeding; and I spent two days in the hospital -- culturally speaking, a very interesting experience -- and was then released to my hotel for a month of bed rest. I felt no pain whatsoever; in fact, this was by far the most comfortable period of my pregnancy. Room service made the bed rest easy, if a bit lonely. The bleeding was slowly reabsorbed by the uterus, and I was finally cleared to fly home at the end of the first trimester.At the time, I didn't realize that I had FVL. The doctor there theorized -- but couldn't be sure -- that the bleeding was due to a small rip in the placenta that was situated too low (placenta previa). This apparently is a common cause for miscarriage in early pregnancy, and I'm not sure if FVL elevates that risk. It's a bleeding issue, so maybe.
Anyway, I made it home and started to see an OB. The second trimester was very uncomfortable but, relatively speaking, uneventful. I injured my leg and had some trouble walking. I spent one night in the hospital for food poisoning. I ached everywhere. I started to get depressed. Pretty typical pregnancy stuff.
At the end of the second trimester -- 26 weeks -- I began to feel very short of breath. Walking to the kitchen completely winded me. I googled and discovered that shortness of breath is common in pregnancy; so it didn't seem like anything to worry about. Two days later, I woke up around 4 am in excruciating pain. My entire chest and shoulder area hurt like I can't even describe. I tried walking around, and then I tried a hot bath, but nothing helped. I then called a nurse, and discovered that my shortness of breath was worse too - my speech was punctuated by a gasping breath after every couple of words. The nurse, needless to say, said that I needed to get straight to the ER. She didn't tell me what she thought the problem was, only that it could be serious. She suggested that I call for an ambulance, but I opted to have my partner drive me to the ER instead.
At the ER, they sent me straight up to Labor & Delivery - even though I argued that the pain was too high up to be related to the baby. Apparently the ER wants nothing to do with pregnant women; because they insisted it was standard procedure.
By the time I arrived in L&D, the intensity of the chest pain had subsided (from a 9.5 to about a 6, on a scale of 10), but my shortness of breath did not. The nurse strapped me up to some monitors and proceeded to ask me about a million questions. My own OB was on call, and he came in to examine me. He said that the baby seemed fine, and my vital signs were all good; so there was no need to worry. He couldn't give a definite reason for the pain, but he said that many women experience "discomfort" (!!!) in the ribcage area due to the baby expanding, and that the rib cartilage might be inflamed. He said that the pain might last for the rest of the pregnancy, or it might not. He also mentioned that that there was a "very small" chance that it could be something more serious -- but that couldn't be diagnosed without a CT scan, and of course no one wants to give CT scans to a pregnant lady. So he decided to play the odds and assume it wasn't worth a CT scan. I was given a script for Vicodin and released.
The next week and a half was HELL. I borrowed an electric recliner from a friend, and pretty much lived in it. Pain was a constant; the only thing that varied was the intensity of it. I took a lot of Vicodin, even though it didn't help. My breathing remained poor. I also contracted what I thought was a bronchial or sinus infection -- complete with fever and a horrible cough. I didn't cough up a lot of fluid, but when I did it was sometimes clear and sometimes blood. I attributed that to sinuses (I get bloody sinus drainage in the winter sometimes). These are all classic symptoms of a pulmonary embolism, but I didn't even know what that was. Having never been pregnant before, I believed my doctor that this was "normal" pregnancy pain. I "worked" from home, and I cried a lot.
Over a period of 10 days, I sought help from a massage therapist, a chiropractor, and my primary doctor (for the supposed infection). I also called my OB's office, and after listening to me talk for a few seconds, they wanted me back in the ER. I was sure that would just be a repeat of the previous visit, so I didn't go. (Yes, I realize in retrospect how VERY stupid that was.)
My regular OB visit came about eventually; and I went in. My doctor was very alarmed to find my breathing still labored, and he didn't like what he heard when he listened to my lungs. He gave me a choice between seeing a lung specialist or going to the ER immediately, and he pushed for the latter; so I went. A CT scan and some other tests confirmed a pulmonary embolism -- a pretty big one, and several smaller ones -- in my left lung. Before I fully understood what this meant, I was very aware of how people in the ER -- and the friend who was with me -- started to look at me differently. I saw a lot of grave faces that afternoon. Only later did I start to appreciate how lucky I was to be alive. I spent the next week in the hospital on Heparin and Lovenox. I was told that there was some permanent damage to the lung tissue (infarction), which I suppose is the result of it going undiagnosed for so long. The baby was monitored the whole time and seemed to be doing fine. Oh, and I was finally diagnosed with FVL (homozygous -- lucky me!!).
My recovery from the PE took a lot longer than I expected. Even after I left the hospital, I was still in a lot of pain. Lying flat was impossible, so I slept sitting up in a recliner for at least two months. My partner gave me Lovenox shots twice a day (Coumadin is contraindicated in pregnancy). I worked from home, and hardly ever left the recliner for the first few weeks because it was either too painful or physically exhausting. The only thing I left the house for was doctor appointments. My OB wanted to see me weekly. My new high-risk OB, who was brought on board to manage the blood thinners, also wanted to see me weekly. My pulmonologist wanted to see me regularly. I had weekly blood workups. I spent an unbelievable amount of time in waiting rooms.
About the time that I could finally walk around again, and was going into work part-time, I developed Intrahepatic Cholestasis of Pregnancy (ICP) -- a very rare and miserable liver condition that causes constant, unrelievable itching over the entire body. The itching was so intense that I couldn't sleep more than 2-3 hours at a time. I took freezing cold baths and used icepacks to numb the worst areas. This lasted until after the birth. It was just another miserable stage of my pregnancy; but I haven't read anything that links it with FVL.
At the 37 week mark, on a Friday, I was in for my weekly OB visit. The protein in my urine had spiked to some crazy level, and my doctor -- who, after misdiagnosing my PE, was hyper-viligent about my case :-) -- believed that I was on the verge of developing preeclampsia. But because I was on Lovenox, an immediate c-section was impractical. We scheduled the c-section for Monday morning instead. I was supposed to take my last Lovenox shot on Saturday night, and then be off of it for at least 24 hours before the surgery. But the baby had other plans...
About 2 hours after that last shot on Saturday, I went into spontaneous labor. We went to the hospital, and they gave me something that slowed down the labor. Sunday evening, Bennett was born by c-section (he was transverse). He was 3 weeks early, but full-sized (7 lbs, 10 oz) and healthy. Both the surgery and recovery went surprisingly smoothly.
Now I'm sure that there are women out there who can beat my story for "Worst Pregnancy Ever" -- but I haven't met them yet! :-) I think it's important to realize that pregnancy isn't always a happy, magical experience; and in my case, it certainly wasn't. But it WAS worth it in the end. And I think my story should, overall, be taken as an encouragement for women with FVL who want to have children because FVL is actually very manageable during pregnancy -if you know that you have it:
- You should see a high-risk OB, and consider taking Lovenox from the very beginning to avoid blood clots (for you and the baby both).
- Oh - and definitely take "shortness of breath" or chest pain very seriously!
I think that the worst thing about having FVL is that every little ache and pain causes anxiety: is it a DVT? a hematoma? some other complication that I haven't experienced yet? My days of blowing off minor aches are over; and my medical expenses have significantly increased despite having very good health insurance. I also worry a lot about losing that insurance. I was an independent before, but I'm a committed Democrat now. :-)