Monday, June 14, 2010

The Disease from Hell--Kacy Henry

When I was four years old, my family and I took a camping trip to Arkansas. When I returned home to Louisiana, I had over 50 deer ticks on me. We thought they were freckles at first. I got the bullseye rash, muscle and joint aches, etc., and my parents brought me to my pediatrician. He and his assistant pulled all 50+ ticks off of me with tweezers and sent them off to a medical lab at Texas A and M to be tested for Lyme. The test returned positive, as did the Lyme test they did on me. The doctor refused to treat me for Lyme's Disease, and I never received treatment. After six months, I received about a week's worth of antibiotics for a virus, which seemed to help for a little while, but then things got bad.

At five years old, I wound up in the hospital with viral spinal meningitis. I had never come in contact with anyone with meningitis, and no one I knew became sick with it. Until now, we never knew how I contracted it (Lyme Meningitis). The years following consisted of hundreds of ER visits, infections, viruses, colds, strep, the flu, Strep B in my urine, kidney infections, chronic UTI's, muscle aches, joint aches, migraines, etc.

At six years old, I was seeing a pediatric neurologist for chronic migraines. Whenever I got a migraine, it would last for weeks. Nothing helped. I would take a bath, and then bundle up in a towel and lie on the hard tile floor in complete darkness and try to sleep it away. No child should have to know that kind of pain. A six-year-old child should not know how to say "Pediatric Cardiologist," know what it is, know how nurses insert an IV, and know multiple names of medicines.

Somehow, I managed to keep up an active life. At four years old I was certified for snorkeling. Then, I joined our local swim team. I was the first kid that young to do so, and I also pioneered a novice group. I took dance, karate, fished, hunted, loved to write, and I was an honor roll student in school.

With the meningitis, I missed out on nearly my entire year of kindergarden. Instead, I was placed on a program called "homebound." The teachers from the school came directly to my home and taught me. Little did I know when I met my teacher that I would be with her until my junior year in high school.

Ever since the meningitis, I've been on and off homebound due to attendance issues. All of my absences have always been excused by a doctor's note and I've always made up and kept up with my work, but it never mattered. I'd always end up back on homebound for being sick too often.

Now I'm 17 years old and going to be a graduating junior this May. The only reason that I'm able to graduate is my mom. If it hadn't been for her fighting with the school board, helping me keep up with my work, and helping me persevere, I would have never had this opportunity.

About five months ago, I had surgery to have a port inserted for long term antibiotic use at the request of my Lyme's doctor. After the surgery, I experienced excruciating muscle spasms. The muscle that they had sewn the port into was very inflamed and you could see it jumping from across the room. Upon arriving at our local ER, the ER doctor told us that I just needed to get over it and that he couldnt't give me anything for pain because I had been sedated earlier that day. With no one helping us, my mom and I drove over two hours away to Alexandria, where I had surgery. They admitted me into the hospital and kept me on a morphine pain pump to control the pain.

Two months ago I woke up with pain in my side. It wasn't that bad at first, so I just took some medicine and went back to sleep. By seven o'clock that evening I couldn't walk. The pain was so intense that I couldn't stop screaming, I was puking the Miralax I had taken (before it got that bad I thought it may have been constipation), and I was so weak that my boyfriend had to hold back the recliner that I was sitting on. After being in pain all day and finally at my breaking point, my parents called an ambulance.

The ambulance came and they assessed me and put me onto the stretcher. They had to lift me up by the blanket I was sitting on because I was so weak, and they got me into the ambulance and started an IV. My mom had told them that I was having chest pain (the pain was radiating to my chest), so they administered nitroglycerin. It only took the edge off the pain. Then I started vomiting. They administered nausea medicine through IV. I remember when I was puking I wet the stretcher and all I could do was apologize.

When we reached the hospital, the nitroglycerin was starting to wear off. The pain began again, and so did the yelling. When I asked for pain medication, the ER took over an hour to order it from the pharmacy and administer it. The pain medicine they gave me did nothing, so I had to wait for stronger pain medication. While I waited, the nurses kept telling me to be quiet or I'd wake the babies in the ER. I couldnt stop yelling, the pain was so intense. After an hour, the ER doctor came in and through my yelling, I heard her say that they were going to discharge me. When I tensed up and tried to tell her "no," the pain intensified and the doctor lost patience with me. I told her I was not leaving until we knew what was wrong. Her reply was, "We don't have an ultrasound tech on call tonight, you'll have to come back tomorrow."

I refused to leave. The pain was so intense, I knew something had to be wrong. Finally, the doctor gave in and called in the ultrasound technician (they had done no other tests besides blood tests yet). In the ultrasound room, the technician kept asking me if I was sure I wasn't pregnant. After a urine pregnancy test, a vaginal exam, and a blood pregnancy test, the doctors finally told me that the ultrasound uncovered massive amounts of fluid throughout my chest, abdomen, and pelvic area. They had thought it might be an ectopic pregnancy at first, but after tests proved I wasn't pregnant, they realized that it was blood. I finally got morphine and the pain lessened. Next was a CT scan with contrast by IV and enema.

Finally after testing and several rounds of pain medication, the doctors realized that I had a massive ovarian cyst that ruptured, causing internal bleeding throughout my body. They prepped me for emergency surgery, and the next day I had a laparoscopic procedure and made it through fine.

During my surgery, they noticed that my gall bladder was enlarged. So, a few weeks ago I underwent a HIDA scan (gall bladder function test). This test revealed that my gall bladder was only functioning at 32%. I had surgery two weeks ago to remove it. While I was in the hospital, they said the duct to my gall bladder was sealing off and they don't know how it was functioning at all.

Now recovering from my gall bladder surgery, I'll be having a surgery in a month to remove my port. I had bronchial spasms and my Lyme's doctor doesn't want to take a chance with it. My friend--who has had Lyme's for the same length of time, and who has a lot of the same symptoms--and I call Chronic Lyme's Disease "the disease from hell."

The only other medical condition we can compare with it is cancer. There are common misconceptions about where Lyme's Disease is found, and what it can affect. The truth is that Lyme's can be found everywhere. In the North, South, East, and West. Chronic Lyme's Disease affects every tissue, every muscle, every organ in the body. Lyme's is not something to play around with, and it destroys lives.

Kacy Henry, Louisiana


  1. I'm so sorry you've had to go through so much from such a young age. I think one common thread in Lyme sufferers is that we persevere. We have to because no one else will do it for us.

    I felt much better after I had my gallbladder removed and I hope the same will be true for you as well.

  2. Kacy, I'm with Jennifer. I'm so sorry you've gone through so much. Thank you for telling us your story and for showing us your hope and perseverance. You have a long life ahead of you. I'll be praying it's a healthy one.

  3. Kacy, your story made me want to scream! Thank you for sharing. I want to learn more about Lyme and what we can do to help people who have been exposed. It is so important to raise awareness about this horrible disease. It's just to easy to think that it happens to "other" people. Bless you dear one. (I have 17 year old twins, so I just want to give you and your Mom a hug!).

  4. You have been through so much and been treated so poorly by the medical world. It is so frustrating and can feel so hopeless at times. You are in my prayers for strength, and healing. Thank you so much for sharing this with us here.


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