I am what doctors and nurses call a frequent flyer. A
frequent flyer in this context is a person who frequents the hospital as a
patient more than a few times a year. I
go to the hospital so often that the nurses and doctors actually know me by my name
and likewise. On average, I would go to
the hospital two to three times a month because of severe nausea, vomiting, and
pain, not to mention, extreme dehydration.
It is not a choice of mine to go to the hospital so often, but I suffer
from two rare, chronic disorders called Cyclic Vomiting Syndrome (CVS) and
Abdominal Migraines. Symptoms include the following: excruciating stomach pain
that radiates to my whole body, debilitating nausea, extreme fatigue, weakness,
lethargy, and uncontrollable and forceful vomiting.
At any given episode, I would vomit every fifteen minutes, which
would result in becoming severely weak and dehydrated. Other symptoms include:
profound sensitivity to light, noise, and smell. If my nurse left to smoke, to drink
coffee, or to eat food, I would smell it just as a pregnant woman would be able
to do. I also wear an eye mask to shield
me from any light. Not all CVS sufferers
experience debilitating pain, but for those who have abdominal pain such as
myself, we are also diagnosed with abdominal migraines. The relationship
between these two disorders is as if they are married to each other without the
option to divorce. With that said, my
abdominal migraines always trigger my CVS episodes, and I never have one without
the other.
Only a handful of doctors are aware that these disorders exist. Because of the rarity of my disorder,
diagnosis is usually difficult and rather prolonged. Most of the time, patients who have CVS have
to go through a whole battery of tests, and have to see several specialists
before a correct diagnosis is made. In
fact, CVS is so rare that it doesn’t even have a medical code, so it is no
wonder why doctors aren’t knowledgeable enough to make a quick and accurate diagnosis.
(I will note, however, that sometime in 2013, a medical code would finally be
used for CVS).
In addition, nausea and vomiting, along with stomach pain can be
caused by a myriad of other diseases.
With that said, CVS is a diagnosis of exclusion so once all the obvious
disorders are ruled out, it is then when a diagnosis can be made only by the
knowledgeable doctor. Other doctors with
less experience will most likely misdiagnosis the patient with other disorders
before the right diagnosis is made. The
average time it takes a medical professional to correctly diagnose a CVS
patient is an average of eight years. Unfortunately,
this prolonged delay will not only cost the patient financially, but also it
will more importantly cost them emotionally.
I was lucky because I was diagnosed in less than a year of my onset, and
I am forever grateful for the medical student who figured it out at Montefiore
Hospital in the Bronx. I believe that I
would not have been diagnosed as quick if I relied on the hospitals in CT to
diagnose me. At St. Mary’s Hospital in Waterbury, I’m the only patient with
CVS, and in this case, I rather not be the only one.
Because my illness is unknown to most of the medical community,
I fall victim to becoming a real life guinea pig because treatment is usually
not evidence-based, but rather trial and error.
In addition, I also fall victim to polypharmacy, which is the use of multiple
medications. More specifically, this word
is used to describe when too many medications are being used that is either clinically
warranted or not. In either case, there
are too many pills to take, which then result in higher incidences of adverse
drug reactions or drug-drug interactions. Actually, if you take more than three
different medications, the likelihood of having an adverse side effect or drug-drug
interaction is in the eighty percentile.
I
had my share of adverse side effects and drug-drug interactions as I am on a
plethora of medications. For example,
when I started taking Topamax, I felt great for three weeks, and had no
symptoms so I started to look for jobs to go back to work. However, that was short-lived. I ended feeling really sick and started to
have violent seizures one day so I went to the ER. After my blood work came in, I was immediately
admitted to the hospital for renal acidosis, and I was told that I developed
kidney stones from Topamax. Because of that, cessation of the Topamax was
immediate.
In addition to becoming a human guinea pig with too many
medications to take, medical professionals’ lack of knowledge leaves a lot of room for healthcare professionals to be inconsistent and
fragmented, uncoordinated and, surprisingly, abusive. It is sad to say that I have had too many
instances where I felt as though my treatment was compromised because of
inconsistencies and lack of coordination between medical professionals involved
in my care. Because of these problems,
my health care is almost always fragmented and counter-productive.
My experience as one who has a chronic, rare disorder in this
healthcare system has taught me to expect these inconsistencies and
fragmentations. After all, how can a doctor help me if they have never
heard of my illness? Sadly enough, when doctors have exhausted all his theories
on how to manage my disorder, they then lose interest in helping me and become
unavailable and frustrated. It is the
frustration that usually causes doctors to become abusive. Subsequently, doctors give up on me and
discharge me of their care, and pass me along like a hand-me down, and this becomes
a vicious cycle that I can hardly escape.
This alone makes it difficult to get adequate and consistent health
care.
Because doctors pass me around, it is no wonder why my treatment
is fragmented and uncoordinated. After all, a Gastroenterologist would
not treat me as a Neurologist or Naturopathic doctor would. Based on
their specialty, each doctor would approach my disorder using different medications,
modalities and schools of learning.
Furthermore, I see many specialists for my disorder, and each
specialist wants me to follow their specific care plan so I often end up
feeling more confused and faithless in my journey for becoming healthy.
In fact, often times my doctors would contradict one another. For
example, one doctor would tell me not to treat my pain with a certain
medication while my other doctor will tell me that the only way to treat my
pain effectively is to treat me with the same medication that the other doctor
was adamant about me not taking. Instead of my doctors trying to work as
a team to coordinate my care, they tend to ignore the other doctor's
recommendation leaving my treatment uncoordinated and inconsistent, as well as,
leaving me feeling uneasy and confused about how to best manage my disorder.
I realized in the end that I am the one in the control seat, and
I need to be my own best advocate. That
means becoming an expert on my disorder, and reaching out to specialists,
organizations, and anyone that may help me manage my illness without making me
feel powerless. St. Mary’s Hospital
knows me because I made sure they got to know me. I wanted, in a weird way, to build rapport
with them so that they can see how sick I really am, and that eliminates the
doctors from believing that I am a drug-seeker.
After all, I do ask for the medications that I researched that helps
aborts episodes. So, in a way, I can be
labeled by some close-minded doctors as a drug- seeker only because I know what
medications will make me feel better. I
also make them follow empirical guidelines for the treatment and management of
my CVS/abdominal migraines. I also must note that having a caring doctor who believes in you and well-being is paramount in dealing with a rare disorder, because as much as you are your own best advocate, some doctors will listen to another doctor than you, the patient. I am lucky to have a few doctors I can trust.
If I have to go to the ER, I go with a prescription from my
doctor stating what medications I need, as well as, bring my own note that I
wrote that includes the following: my name, age, diagnosis, complaint,
medications, allergies, insurance information, and lastly, a brief medical
history. I can’t tell you how helpful
and life saving it is just to have that paperwork on board when you are at the
E.R.
Living with CVS is not easy at all, and I would never wish this
on anyone because this is a life not worth living; however, if you do have CVS,
you just have to try to manage your life the best way you know how. CVS made me see life differently and the most
important lesson to learn is to stop comparing your life with other people’s
lives and to love yourself as you are. You have to accept that this is your
life for right now, because you never know what can happen in the future. I learned to enjoy the simpler things in
life. For example, a wonderful day for
me would be a sunny day where I am not in pain or vomiting. That is a successful day for me, and it
brings me much happiness. I have learned
to not worry over little things and not to take things too seriously.
Otherwise, it will most likely bring on an episode. My life with CVS is not easy and it is full
of struggles and setbacks, but this is the only life I know, and I wouldn’t
trade it for the world.
