Rachelle T’s Story
“Well, in 25 years of practice I haven’t seen worse. I don’t know if she will ever come out of this or if she will have permanent side effects….10-12 more hours and she would have been dead. You see this pill?” My husband nodded at the Psychiatrist that saved my life… “This will knock you out for 8 hours (my husband is a big guy!), I want you to give her two.” A couple hours later at home he gave me two of those little pills called Lorazapam and I slept for a whopping FOUR hours. Thankfully, in combination with heavy doses of Depakote, Seroquel, and the Lorazapam, I slowly began to slip back into reality from the Psychosis of December of 2010 that not only almost took my life, but would change my life forever.
Let me start at the beginning. My name is Rachelle Thomas and I am currently 31 years old. I was born with a very rare progressive lung disease called Primary Ciliary Dyskinesia or PCD. I was not diagnosed until I was 13 and have endured over 30 surgeries and countless hospitalizations due to PCD and the host of other health issues that come with living with a chronic illness. Because of this disease, antibiotics have literally kept me alive over the years. I eventually became colonized with difficult drug resistant bacteria called Pseudomonas. The only oral antibiotic that would take care of my exacerbations of ear, lung, or sinus infections was either Levaquin or Cipro, common quinolone or fluroquinolone drugs. These drugs are very powerful and helped keep me out of the hospital on IV antibiotics many times. However, my doctors, nor I, were aware of a very serious side effect—one that almost cost me my life.
In October of 2010 I spent 14 days in the hospital at the University Medical Center in Tucson, AZ where I lived. I needed an extra boost to kill my difficult bacteria, but felt mostly better at the end of those 14 days except for still feeling short of breath and tightness that was abnormal for me. I literally had my bags packed waiting to be discharged on day 14 when a doctor came in and told me that I had cultured a fungus called Aspergillus and would need additional treatment. I opted to go home and follow up with my pulmonologist or lung doctor outside of the hospital. I got in to see her right before Thanksgiving and she said that the fungus is very hard to kill and the only thing that works was steroids and lots of them. Upon discharge from the hospital, I was placed on a rotation of antibiotics to keep my lung bacteria under control. One month I would do Levaquin, the next month I would do an inhaled antibiotic called Colistin, the next month I would do Cipro, and then the next the inhaled Colistin and so forth. It happened that I was on my month long course of Levaquin when she placed me on very high doses of Prednisone along with an anti-fungal drug called Itraconozole.
I went home in tears, tired from dealing with being sick all the time and having to start more drugs. All of the new drugs I had been given could cause upset stomachs and with Thanksgiving being in a couple days, I didn’t want to ruin that so I held off starting the new medication for a couple days. I started taking 60mg of Prednisone and the antifungul the day after Thanksgiving. I was supposed to do a week of 60mg, a week of 40mg, a week of 20mg, and then a week of 10mg. I made it to halfway through the week of 40 and literally went crazy. I was hallucinating, not sleeping at all, thought I was pregnant, and completely manic then depressive. I don’t remember much from those days. My husband and family took me to two different Emergency Rooms. One gave me Ambien (a KNOWN hallucinogenic) and sent me home and that only made it worse. The next morning I got an ambulance ride to the University Medical Center where I had been hospitalized. My lung doctor refused to even come see me as she said she didn’t deal with the side effects of the medication she prescribed because I was an adult and she was a pediactric pulmonologist. With my disease being so rare, she was literally the only doctor in town that actually knew what my disease was so she agreed to see me as long as I had an adult Primary Care Physician or PCP. My family had called my PCP but he wouldn’t see me either. They discharged us from the second ER and at that point my husband and family were completely hopeless and frantic for someone to help. Thankfully, both my Aunts are nurses and one worked in Ambulatory services with Psychiatrists. She called a couple of them and one stayed late and agreed to see me. If he hadn’t done that I would have died.
I started going into what we now know as Psychosis around December 12th. January 3rd my husband had to start a new job in Phoenix—a city about an hour and a half north of us. I couldn’t be left alone as there were suicidal thoughts. There was one night I remember very clearly—I was sleeping in my Mom’s bed with her because they couldn’t leave me alone. They hadn’t thought about the fact that my Dad’s guns were at the corner of the bed. I woke up in the middle of the night from my drug induced sleep and everything in me wanted to pick those guns up and just start shooting. A voice in my head was yelling “No!” repeatedly and I truly believe that was the Holy Spirit. Whatever the reason, I did not pick up the guns and I went back to sleep. The next day I told the Psychiatrist that and the guns were locked away.
Those fitful nights of drug induced sleep were the beginning of a very long recovery. I was finally able to wean off all the medication by that May—6 months after almost dying. However, I did not feel like myself. I struggled with depression and my memory wasn’t what it used to be. At the time, the Psychiatrist thought the main culprit to the whole episode was the Prednisone and that in time I could probably take the Quinolones again. In the meantime, I would have to do IV or very expensive inhaled antibiotics that insurance rarely covered.
Fast forward to June 4th of 2012…I coughed up blood, went to the ER and my health spiraled out of control again. A few days later, my doctor prescribed Levaquin for me again. I had an appointment in North Scottsdale early in the day that my Mom took me to while my husband was at work as I was too weak to drive. On the way home to her house in Tucson where I was planning on spending the night, I took my first dose of Levaquin. I got settled for bed that night but was having a hard time falling asleep, so I went to my Mom’s office and rummaged through her books. I started reading the first chapter and out of nowhere, I went into a hysterical fit thinking Satan was trying to trick me. I freaked out because I knew what was happening—I was in the beginning stages of another Psychosis. I didn’t sleep at all that night and immediately discontinued the Levaquin. Thankfully, we caught the Psychosis early this time, and I was able to get out of it without heavy duty medication. However, I was not myself—I was super anxious, couldn’t focus, couldn’t follow simple directions, and a host of other issues. That September it was like a switch flipped in my brain overnight and I stopped talking and went into a very severe depression. I had no idea what it was and was in denial for a long time as before the first Psychosis in December of 2010, I was a super bubbly, happy person that never struggled with anything close to depression. Sure, I had my bad days, when I was sick and tired of being sick and tired, but everyone that knew me can attest to my positive attitude in the midst of severe trials. I actually got asked, “Why are you so happy, when you are so sick??” ALL. THE. TIME. Since December of 2010 my life has been drastically different.
Before Psychosis I had ONE drug allergy: Sulfa. As an infant I got hives with that. Since December of 2010, I literally have had either an allergic or adverse reaction to about 10 different medications. Between difficult multiple drug resistant bacteria and all my allergic/adverse reactions, my options for treating my infections has come down to ONE medication: an inhaled antibiotic that is $5000 for one month supply (which is one course) and that my health insurance doesn’t cover. My husband is looking for another job to try and find better health insurance coverage so he has to change his life because of FQ’s as well.
In May of 2013, I was again hospitalized and had my first severe vestibular or balance system injury. I went into the hospital able to walk laps around the long hallways, which I did several times a day to try to help keep my lungs moving stuff up. I started feeling dizzy and light headed so they started running the two IV meds I was on slower but during one dose I felt like my entire body was being crushed under water and after that I couldn’t even sit up on my own. I left the hospital in a wheelchair and unable to walk unassisted. From there I started not sleeping again and went into a third Psychosis. This one was different from the second one in that I was very hostile but again there was a lot of hallucinations—including believing I was pregnant with septuplets—and lots of manic/depressive and suicidal tendencies. I refused to take medication because I was scared of it this time around and thus my recovery took a lot longer—I am still currently on heavy duty medications to help me sleep at night.
I was recently hospitalized this last March for an excacerbation and Phenergan, an anti-nausea medication and the IV antibiotic, Aztrenazam caused a second severe vestibular or balance system injury. I couldn’t walk on my own and have neurological tremors. I have difficulty focusing and even typing my story on the computer is making me nauseous as I have constant vertigo and am undergoing rehab and awaiting multiple neurological tests to see if the damage will be permanent this time—yes, this is now the FOURTH time my brain has been damaged by antibiotics. Two by FQ’s, two by other antibiotics that shouldn’t have caused the vestibular injuries, but they did. I truly believe that my brain was so badly damaged in 2010 (almost dying will do that!!!) that my life will never be the same again.
I could go on and on about how this affects my daily life. I KNOW antibiotics are not the enemy—I am alive because of them and for me, it wasn’t an over-prescription of FQ’s, but had the doctor known about the “rare but serious side effects” of psychosis caused by Levaquin she may have chosen a different antibiotic for me at that time. There is always risk-benefit to antibiotics and for someone like me with a very rare disease, often I am caught between a rock and a hard place. Since 2010, that rock and a hard place got much smaller and it is a very scary place to be. I NEED to be able to take antibiotics to stave off these infections that are causing more lung damage that will eventually lead to the need for a double lung transplant. With my choices being so limited now and my brain having been so damaged, my options are running out. I just got a Urinary Tract Infection (UTI) on top of everything else and there is only one antibiotic I can take for that and last year my bacteria were resistant to it. I’m praying it’s not this time, but if it is, I’m not sure what my options are going to be. Before 2010, I had every drug option but Sulfa drugs available to me—post 2010, I have one very expensive inhaled antibiotic and one to treat my UTI that may not even work. That is a very frightening place to be and sadly, my story is not unique.
Please feel free to contact me for more details about my story. I have a blog www.rachelleandjordan.blogspot.com that shares more of my journey. Thank you for reading this and I pray it helps someone not have to go through what I went through!