In early April I made an appointment with my primary care physician because at the time of that appointment I had been having 23 consecutive nights of flu like symptoms (aches, chills, fever, headache, and extreme fatigue). For a while I attributed all of this to my recent surgery for endometriosis. You know, "Oh Kristen, you just had surgery, of course you are going to be tired...this is all part of recovery..." Wrong.
My doctor listened intently as I explained all of these seemingly bizarro symptoms- onset each night between 5-6pm; pain in hands, feet, hips, and spine; fever ranging from 99.0 to 101.7; chills that would send me to bed in multiple layers of clothes; waking up around 2-3am sweated through said layers of clothes; and waking up just fine. That's the kicker- I'm fine during the day....this all starts at night.
The doctor is just as stumped as I am and decided to order some preliminary blood work to see what that showed. My inflammatory markers came back extremely high (28x what the high end of the normal range was) and my liver enzymes were extremely elevated. She recommended we go see a rheumatologist and get her input.
Luckily I was able to get in with a rheumatologist a short 2 days after my doctor made the referral. Again, she sat and listened while I explained these weird symptoms. The only thing she knew at the time was that there was some reason my body was attacking itself and we were going to have to do more blood work to find out what exactly is going on.
The next morning I showed up to the lab in the hospital to get my blood drawn. Little did I know they were going to be taking about half my blood from me. They drew 19 vials. 19. Like, one more than 18. The man that took my blood even told me, "I've been doing this for 15+ years and I've never drawn 19 vials from one person- let alone in one sitting." They made me stay for 45 minutes after he drew the vials to make sure I wasn't going to pass out. I didn't pass out and headed off to work.
The results of that blood work starting coming in the next morning and it raised more questions than answers. My inflammatory markers continue to be extremely elevated, my liver enzymes were actually higher than they were at the other doctor's office, my EBV (better known as Mono) was positive and showed active infection, my CMV (cytomegalovirus) was also positive and showed active infection. I also had some Lupus markers come back elevated as well.
The rheumatologist called me on a Saturday morning and told me about the CMV testing and advised me to stop our current fertility cycle. It can be dangerous to get pregnant with an active CMV infection as it can cause birth defects or even miscarriage. We were devastated. She also advised me to get in with a Gastroenterologist doctor to evaluate some other symptoms I had mentioned to her (I won't go into that here....). She called for me and got me an appointment the following week.
Off I go to another specialist. The GI decided that with the symptoms I was describing it was best to get a CT of my chest, abdomen, and pelvis as well as get a colonoscopy. Yep. At the ripe old age of 29 I had my first colonoscopy. My GI appointment was on a Tuesday morning and the colonoscopy was scheduled for that Thursday...as in 2 days later. My CT was the very next morning (Wednesday) which also happened to be the day of my colonoscopy prep (if you've had one, you know the absolute thrill all of that is...). I had to drink 32 oz of contrast within an hour of getting there. Ugh. I'm always up for a challenge....but sheesh. That's asking a lot of a person. We were expecting to see my spleen enlarged because of the Mono but everything was normal- except the blood clot they found in one of the main veins of my liver.
So, this could explain why my liver enzymes were that of an alcoholic with liver cirrhosis.
I then had to have an ultrasound of my liver to see what the blood flow is through the clot in order to see how to treat it. The soonest they could see me for that ultrasound was a week after the CT. Talk about living on pins and needles for a week.
During that week of waiting I had another appointment with an Infectious Disease doctor to talk about how severe the mono and CMV infections are. I know, at this point I feel like I've seen every doctor within my zip code...and I live in the medical district part of town. I work with this particular doctor in the hospital and know that he is an amazing physician. I had no problem becoming his patient. He gave me some interesting news....he thinks my mono and CMV are false positives. Really? Jackpot! All of my research that I had done in regards to getting pregnant after a CMV infection said that it's safest to wait between 6 months to a year after a repeat negative blood test. In the words of our fertility doctor, "I don't think you've got that much time without having to have another surgery".
Once again, he ordered more blood work and I'm still waiting on that to come back. One of the tests had to be sent out of state to be read. One of them will tell us definitively whether I've got mono and CMV or not. We're praying for not.
My ultrasound finally rolls around and I had to travel about an hour north to Temple to get it done. It took about an hour to finish and by the end of it I was literally bruised. Who would have thought getting an ultrasound would leave you with battle wounds. My ultrasound was on a Friday morning and the GI doctor called on Monday morning to share the results: the clot was gone. Completely gone. He said he didn't have an explanation for it because clots that size don't just "go away". I told him I did- I serve a God who is bigger than any clot and I had an army of people praying for me.
So, here's what I'm asking from you- keep praying. We still don't have answers as to what the original issues are stemming from. I did go a very refreshing 14 days fever and pain free until last night when everything came back and it came back intense. We want definitive answers about what is going on. The Infectious Disease doctor thinks this is a rheumatology issue and the Rheumatologist thinks this is an infectious disease issue. Pray for wisdom for the doctors and for us. We are looking into getting a second opinion at some point in time. The doctor I work with at the hospital has offered to get me in with another rheumatologist that he is very good friends with so that we won't have to wait until July to get in.
If you made it through all of that, kudos to you my friend. :)
so sorry to hear about all of this kristen! prayers for all of you for quick answers and an "easy fix" to the problem!
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