“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.
I'm also currently having issues with my knees and tore a ligament in my wrist in 2006. These drugs are known to cause tendon ruptures and tears and so I won't know until I get the MRI done, but I wouldn't be surprised that my years of living on them caused damage to my tendons and ligaments. I remember having knee pain way back in high school but with my high pain tolerance I have just lived with lots of pain over the years because I never have enough time to deal with everything that goes on at once with my body. Something ALWAYS hurts so things that would send the normal person running to the ER I push to a back burner and go on with life. Like the time I finally told doctors I was throwing up every day and had been off and on for years. When asked why I never said anything, I thought about it and realized it had become so normal I didn't even think about it. That is part of the curse and blessing of living with some sort of pain or major issues daily--you learn to tolerate/ignore it which can be good and bad. It's good because I can push through things and go do something fun--like going to the fair to ride my horse and spend time with family for several hours when I have a UTI that is getting worse, just started my period and have major cramps, am nauseous constantly from the vertigo, after a little bit of exertion (like that video of part of my 10 minute ride yesterday) I am extremely fatigued and needed help using the port-o-potty yesterday, and really spent the majority of the day in a lounge chair next to the arena watching all the action instead of being part of the action like I desperately want to. I was in pain most of the day and nauseous and exhausted by the end of the day--I felt like I'd been run over by a truck, but got home and rested a little bit and went on a short walk in the neighborhood to keep things moving in my lungs. Oh yeah--I have a nasty sinus infection right now that we are trying to figure out how to treat with all my antibiotic limitations and I STILL have not gotten the inhaled antibiotic so my lungs are not being treated either. So yeah. Dealing with some sinus headaches (which I almost forgot to mention because I'm so used it even when I think about trying to explain everything that's going on there is so much I "just deal with" I forget about half of it!) and the pleuritic chest pain is a bit above baseline, being in my left and right side since I haven't gotten the antibiotics yet. A month later after advocating and hours on the phone following up making sure the assistance program and doctor's office actually does what they say they are going to do. ;) Yep, that's what being a "Professional Patient" is all about--it really is a full time job.
I thought about sharing this because people at church see me walking around talking to people afterwards and I'm a little more steady on my feet and people are constantly asking me if I'm feeling better and telling me I look great...I'm actually feeling worse, but just a little more steady on my feet and getting more practiced at acting. There was a picture on facebook a couple weeks agao that talked about invisible illness and the challenge of living with it...it went something like this: "People think I fake being sick? (My last manager at BofA thought I wasn't really sick...) No, it takes real talent to fake being well when you feel like crap." I know the majority of people who tell me I look great are REALLY just trying to encourage me, but it can get old when you feel horrible and its hard for me to answer the question, "how are you? Are you doing better?" because in some ways (balance wise!) I'm doing better every day, in large part due to me learning not to push the envelope and my brain retraining itself, but in other's I feel a lot worse because I still haven't gotten the medication I need, even though I have been fighting like crazy every step of the way. So PLEASE don't feel bad if you have been one of those people, I'm simply trying to explain how it can be difficult to respond to that or know what to say in passing when neither of us really have the time to go into details so my standard answer to "how are you doing?" these days is, "Hanging in there by God's grace" because that's literally what I'm doing.
Every day is hard--very hard. I hurt all over and I'm tired and the longer it takes to recover, the harder it gets. As I start to do a little bit better, I know my biggest challenge is going to be learning my new parameters and how to stay within them and still participate in life. And not to get self focused and throw myself a pity party--because THAT is really easy to do when you feel miserable. every. single. day. I'm praying I will take that temptation and turn it to thinking about eternal things and that DAY when Christ comes back or takes me home and I will be free from this dilapidated falling apart fleshly sinful body...and I pray that I will take the opportunity to just say, "Hanging in the by God's grace" and immediately ask how YOU are doing and really listen and pray and pursue your heart and encourage you and comfort you with the great comfort God has given me during these long hard dark days. Thank your for walking this journey with me--I couldn't do it without all of you! I'm gonna sign off now and enjoy this cool evening and Jord and I are gonna take the puppy dogs for a drive. It's the little things these days that mean so much.
In the Love of the Lamb,
Rachelle :)
 |
| Lounging in style...and how I spent most of Saturday...but oh so thankful I got to go! :) |
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