Epstein-Barr Virus. It sounds mysterious doesn't it? You would think it was rare based on how few people have heard that term, but the truth is, it is incredibly common. Most people have the virus - it just lies dormant in the body and many people can go their whole lives without noticing it. Maybe it never activates or maybe they get a mild case and think they have the flu or a cold. When this virus really kicks into gear, it usually takes the form of
the more commonly known "Infectious Mononucleosis" or "Mono". There are over 3 million cases in the US every year. In very rare cases, however, it's activation can cause acute liver failure, and that is how I came to be intimately acquainted with the Epstein-Barr virus.
It was a gorgeous Saturday in July 2008 - beautiful blue skies and sunshine. John and I had been dating for 3 months at this time and we decided to go up to Mt. Rainier for the day.
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Gaga over this guy and blissfully unaware of the siege that was about to take place in my body |
We had a great time looking at the waterfalls, wildflowers and, of course, the Mountain.
It was late afternoon when we decided to head home. I started feeling achy on the way back to the car. I spent the ride home burrowed in a sweatshirt and covered in a blanket on an 80 degree day shivering the whole time. I normally don't get high fevers but my temperature spiked to over 102 degrees. I had never felt sicker, but I didn't have the normal symptoms of the flu - I wasn't nauseous and I didn't have a cough or a sore throat. After a couple of days at home, I knew something really wasn't right, and I went to see my doctor. I could see the concern in his eyes as soon as he entered the room. He told me that he thought I may have Hepatitis, and that I was really too sick to drive myself home. On Friday of that week, I got a phone call that the Hepatitis test came back negative but they wanted to do an ultrasound the following Monday. The nurse told me 3 times that if I felt worse
at all over the weekend, I needed to go to the emergency room.
I felt worse.
I was so bloated and in pain that I could not lay in any comfortable position. I called my friend Norma and she took me to the Emergency Room. I was so concerned about what to tell them because I felt stupid saying "my stomach is bloated". I had failed to realize that I was completely jaundiced-my skin and eyes were yellow. I have never been seen so quickly in an ER. They called the ultrasound tech in at 2 am to check my Gall Bladder but it seemed to be o.k. They did blood tests. They ran my platelet count twice because it was so low, they didn't think the test had come back correctly. However the 2nd time, the number came back the same. The nurse said "Your platelet count is extremely low, so we are going to admit you and give you a transfusion". I was in such a fog that I was just glad someone was going to take care of me. I found out later that a low platelet count is anything below 150,000 - my count was 10,000. Low platelet counts affect the ability of your blood to clot, which means that if I bled at all, my body wouldn't have been able to stop it. They gave me 6 bags of platelets.
My family came to see me right away. When my sister first saw me, she started crying, hugged me and said "Please don't die". Die? I thought, don't be silly. I had no idea how sick I was. The doctors told my family that they were "cautiously optimistic" that I would recover. It actually took years for me to realize how serious my illness was, and that it really was a matter of life or death. Although Acute Liver Failure is very rarely caused by the Epstein-Barr Virus, when it does happen, it has a high fatality rate. In a recent study on Acute Liver Failure from the National Institute of Health, they discovered that out of the 1887 patients with Acute Liver Failure in the study, 4 were caused by the Epstein-Barr Virus. Of those four patients, two died, one had a liver transplant, and one fully recovered. Wow, not good odds at all....
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Jesus loves the little children...red and YELLOW...
Too sick to care that my sister was taking my picture. |
I was incredibly weak - I didn't even know that it was possible to feel that weak. I remember wanting to brush my teeth so badly but being unable to gather the energy and strength to do so. I had horrible, horrible headaches, but they couldn't give me Tylenol because that is hard on the liver, and they wouldn't give me Ibuprofen because that is hard on the kidneys.
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Trying to get my 102.9 fever down with ice packs |
I could hardly eat. I lost 10 lbs over a three-week period.
I ended up being in the hospital for 4 days. They did a CT scan, tested for Hepatitis two more times, and took lots of blood. Eventually they determined that my liver failure was caused by the Epstein-Barr Virus. When I started improving slightly, I was discharged to recover at home. I remember after I had been home a few days, I was talking to my friend Melanie on the phone. She asked me how I was feeling and I said excitedly, "I feel so much better. I sat up for 15 minutes today". I remember feeling genuinely happy about that, but looking back, it was such an indicator of how far I had to go to recover. It ended up taking 14 weeks for me to return to work full-time.
After such a smack down, one would think that this virus would be done with me, but no...not so much.... Usually after people get sick with the Epstein-Barr virus (EBV) they are fine, but some people end up having flare-ups or reactivations of the virus. This is known as Chronic EBV, and yes, I am one of those lucky people. It has never been as bad as the first time, thank the Lord, but I get flare-ups 1-3 times a year on average. It can be a short flare-up sometimes ( a week or two); it can drag on for 10 weeks or more, or anything in between. When I start feeling the tell-tale signs of a flare-up, I just want to cry and I often do. I would seriously rather have Tonsillitis, Bronchitis, Strep Throat, or almost anything else, because at least then I would feel like I could stay home until I felt better, and I could take antibiotics and know that I would start to recover quickly.
When I have a flare-up I feel like:
- I am getting the Flu - low grade fever, chills, body aches, brain fog, fatigue and weakness...day after day after day...
- all the strength has been drained out of my muscles and my limbs have been replaced with spaghetti
- 50 pound weights have been strapped to my arms and legs and I have to tromp through waist high mud while going about all my normal tasks....every day...day after day...
- my head weighs 100 lbs and sometimes I'm not sure if I can continue to hold it up
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Wesley being held up by his companions while his arms and legs hang limply |
The concept of Being "Mostly Dead" as depicted in the movie "The
Princess Bride" is the perfect visual picture of what a flare-up feels like
Everything takes so much effort. Typing hurts. Driving is hard - it is difficult to grip the steering wheel and my arms hurt the whole time. Normal little things that we usually don't even thing about take so much effort. Doing things like laundry, grocery shopping and going to work feel worthy of an Olympic medal because it has taken SO MUCH effort to get through it.
Yet on the outside, there are no apparent, obvious signs of illness even though you feel miserable for weeks at a time. It is such a frustrating, discouraging illness - waking up day after day feeling weary. All you want to do is lay down all the time. You need to rest as much as possible, but you know that you also have to do the best you can to keep functioning because you can't just stop doing life. You don't want to push too hard, because you will get worse, but knowing that balance is so tricky. However, inevitably at some point during a flare-up, the virus completely takes over and you can do nothing but rest - you no longer have a choice in the matter. Again, it is similar to having the flu. You might not be throwing up anymore, but you still have a fever and you are too weak to do anything.
You never know when it
will come or when it will leave. There is nothing you can really do for
it but drink lots of fluids and get lots of rest, but not too much rest,
whatever that means.The virus lays dormant in your body like a cloaked Klingon vessel waiting until your defenses are down and then it attacks. Once you are infected with the virus, it actually genetically modifies your DNA. It has a way of inhibiting the body's natural fighters in the immune system, taking parts of the cell wall it is stuck onto as another cloak to hide it from your immune system. This makes it very hard for your body to fight, which is why it takes so long to recover.
I know that everyone has their struggles and many people suffer from things that are much worse. I try to keep that in mind when I am in the middle of a flare-up, but this is the battle I have been given, and it is very discouraging for me nonetheless.
One of the things that helps me get through these flare-ups is having a friend who can relate because, unfortunately, she has Chronic EBV as well. It is so encouraging to be able to talk to her because she knows exactly what I am going through. It is validating and it helps me feel that I am not crazy or just a huge wimp. We really do have an illness that is not our fault and we just have to fight through it and do the best that we can. Her wise father once told her "Give yourself some grace". So I try to remember that too and give myself some grace.
I am also reminded of some words that our wise Father has given to us. When St. Paul pleaded with God to rid him of his thorn in the flesh, God said:
“My grace is sufficient for you, for my power is made perfect in weakness.”
II Corinthians 12:9
Let it be so Lord. Maybe this should be my life verse.
So I go forward and try to deal with the challenges of Chronic EBV in the best way that I can. I was given this Epstein-Barr Virus plushie a while back, and it helps give me a little smile through it all.
May God give you all grace for the challenges you may face in your life as well.