My life as I
once knew it consisted of being a carefree student at University of Maryland. I was happy go lucky. I
always spent nights with friends out, smiling, laughing, and partying. I
spent my days going to class, studying, interning in Maryland all to develop a future career
using my psychology major and business concentration.
I spent a semester abroad in Prague with friends and wanted to
immerse myself into a new culture and experience life in another country.
However, all of this would soon change. Early November I noticed bruises all
over my legs. I immediately had a gut feeling
something wasn't right. I am very in-tune with my body and have
dealt with medical issues in the past. I ALWAYS trust my gut and have a VERY
strong intuition. I said something to one of my friends, but no one really
thought much of it.
I am about 105 pounds, so I am very thin from the
beginning so I figured I bruised more easily than others and maybe because I
was out partying I was bumping into things. I decided to be safe to go to
the health center to get a CBC. I even knew what a CBC (Complete Blood Count)
was because I get them yearly. They were unable to take me, so I decided
to wait till Thanksgiving to see my primary care doctor. She immediately
took a blood test and said she would call me with the results.
I drove back to college on Sunday essentially forgetting
about the bruising as I enjoyed my thanksgiving break. Ignorance is bliss
in my world. I am thankful I waited because I got to enjoy a month of
what would be the last 4 weeks of my real college experience.
It wasn't until Monday morning after a long drive back from NJ, to
find out that I had 15,000 platelets and had to come home immediately to see a
hematologist or go to the ER. The normal range is 150,000-450,000.
So which do I Choose? I figured I would see a hematologist in my town of Livingston, NJ.
What is a platelet? I called my dad and he put me on the phone with a coworker
that told me platelets clot your blood. You should have hundreds of thousands
he stated. I couldn't grasp
how concerned the primary doctor sounded and how something like this could
happen so suddenly. I came home nervous and thought how could this be, what do
you mean? I felt fine. I may have been tired, but I am so energetic and
upbeat that it takes a lot to wear me down. Granted, a college kid is
always run down these days, so it’s hard to recall how tired I really
felt.
When I saw the hematologist, he drew about 15 viles of
blood. He
looked at me and told me he thought I had ITP, which is called But he said he wasn’t sure
and that a count so low could cause internal bleeding. He wanted to rule out blood
cancers, leukemia, lupus, and other serious diseases to make sure this wasn’t a
secondary issue. He told me ITP was a diagnosis
of exclusion and relatively rare among someone my age. My first course of treatment he
prescribed was steroids and I begged him not to put me on them, since I had
been on them in the past. My count was critical, I knew
there was a chance of internal bleeding, but I said I’d take the chance. I
didn’t have the bleeding symptoms that most people suffer from, I simply had
bruising and was in denial. I feared treatment and medication given my history
of being so sensitive to any type of drugs and have severe allergies. I asked
to to wait the week out and he told me I could. I asked if there was anything
else I could do. He explained to my parents that ITP is an autoimmune blood
disorder where the platelets are the prime target.
I prayed every night that week that my count would rise.
Cancer? ITP? What world am I living in? How could this happen to me? The doctor
thought maybe because I was younger, it could go away on its own as it often
does in kids. I had a virus in October and thought maybe he was right and
time was in my favor. But time being in my favor was farthest from the truth.
This was just the beginning of what would be the hardest days of my life.
I returned back to school to take finals, fearful, but
courageous, as my parents were nervous. I lived in a 14-person house with
a lot of germs and everyone is out late with music playing at all hours of the
night. They wanted me to rest and get the best sleep I could and take
care of myself so I could recover. I got the phone call a week later that
my count was now 12,000 and that I needed to start prednisone
immediately. I was devasted and immediately I started a hefty dose of
60mg of prednisone but responded in a week at 400,000! I thought this was
finally over and he told me to taper off the drugs and thought this was a done
deal. I went out to dinner with one of my best friends and celebrated and
thought, “Wow this is a Miracle.” Miracles happen, I thought, and this gave me
great faith.
I’ll never forget sitting in the doctors office and
telling him, “Its okay I’ll be fine at least I’m not a football player, my
whole life would be over”. You can’t play contact sports with ITP,
assuming you have a count like I did, and have to be very careful about
bruising and bleeding, But soon I would realize my life would never be the
same. I would mourn the life I once knew. Those are the exact words the
gynecologist said to me, one of the most inspirational doctors I
know. I cannot believe how positive and naive I was and maybe I even
jinxed it.
I hadn't shed a tear until I started the
prednisone. The whole time I was relatively calm and positive. Once the
prednisone started it was horrible. I had every side effect and I was shaking
taking my exams, crying my eyes out, my hormones were completely out of whack, unable
to sleep, skin changes, horrible anxiety, felt foggy, dizzy, and nauseous. I
had no appetite on steroids, which is unique and ending up losing weight, which
I couldn't exactly afford at 105 pounds. I also developed an eye
infection and a sinus infection during this time. I was in and out of the
blood labs and doctors while taking finals. I miraculously took four
finals in two days, passed, and came home to depressing news.
I asked to be healthy and take worse grades for the
semester. My luck works on opposite day and that’s exactly what
happened, I managed A’s on my finals with no sleep, but my counts
dropped. My winter break began and my counts dropped as the
prednisone was tapered. I was supposed to go on a family vacation to Mexico, but I had
to cancel that to focus on my health and go to the doctor. I was fine with that
and just was excited to get better and hoping my count would rise.
There’s always more vacations in life and I wanted my brother and dad to go
away, so my mom stayed home with me.
I switched doctors to get another opinion in NYC at
Cornell and she suggested IVIG. I spent three days getting IVIG, which
boosted my counts up to 200,000, but consisted of 5 hours of infusions each
day. I spent two days a week getting blood work and praying that maybe my
body just needed one more boost. Always stay positive right, but maybe I
was too positive. My birthday was coming up and college was approaching,
as I would be going back on my birthday, January 22, for my final semester in college.
I would've gone back earlier, as all my friends were, but I was
doing IVIG in the hospital those days with a 102 fever and a horrible
migraine. I had rashes even with the Benadryl, which they infused me
with. I now know they infused me too fast for my weight and that’s why I
received such bad reactions, which frustrates me now.
Those hours were scary as I sat next to breast cancer
patients. I had never imagined at 21 I would be witnessing such sadness
and fear. The feeling was so strange. I felt so out of place being
the youngest one there and felt weird that I didn't have cancer but
was sitting next to them. I felt so horrible that they had cancer and
offered them my magazines and loved to talk to anyone who wanted to. The
infusions were prepped with IV Benadryl, which actually left a mark on my arm. The
nurse quickly agreed with my claim of my sensitivity to drugs and couldn’t
believe how she could actually see the line of Benadryl up my
arm. Benadryl made me so hyper but groggy, a weird sensation. I
spent my infusions calling UMD to try and schedule my classes for the upcoming
semester. The doctors told me I should be relaxing and not to use my
phone. They were monitoring my blood pressure and all my
vitals. “But I need to graduate”, I said, and was trying ensure I
would be off the waitlists for the semester, so I could finish in May.
IVIG was a hell of an experience and I wondered when this
nightmare would end. Would I have to do this again? I drove down to UMD
with anxiety as I wondered what it would be like to be at school with a serious
illness. How could I handle all the blood tests and side effects? What’s
to come? How do I explain this to anyone? I didn’t want people to pity me, or
feel bad, but I didn’t know how to approach a situation like this. I
didn’t want to be asked why I wasn’t around all the time because I knew I would
be absent for things I once attended. I didn’t want people asking me
why I was always at the doctor? I didn’t know what to say because I thought
anything I said, they wouldn’t get it. How could they when the doctors
don’t even get it? I couldn't express into words how I felt but now I
know. I
felt trapped, angry, victimized and alone.
Why me? Prior to the IVIG, the doctor almost made
me miss it that week because she forgot to call me to tell me my count had
dropped down to 12,000 that week. Can I trust anyone? I finally
came back to school and LabCorp had lost my results when I got blood work down
in College Park.
It was one nightmare after another. As a college kid, I kept
calling LabCorp and calling the doctor to find out my count. She would
sometimes not even return my phone calls. I couldn’t believe it that my
life was at stake and she didn’t even pick up the phone to call me. I never
felt such anger towards a doctor and felt betrayed. It was impossible to be
doing this long-distance. I got so frustrated and anxious.
There was nothing I wanted to celebrate on my birthday, I
just wanted to be healthy. Nothing good came out of any day except for another
doctor's visit or a realization that normalcy no longer existed as it once did
for me. As I said earlier, I have a gut so strong that I knew my count
was dropping. There were no bruises, but I felt it. I felt tired
but something just didn't feel right. I was getting
biweekly blood tests at LabCorp in College
Park. I befriended a nurse and she
hugged me each time I left. She asked me why I was still
coming in so often and that I was the only patient that she had seen come that
often since December. I once again, had to
frustratingly explain this. I liked her and she told me she
thought about me often after work.
My mom came down with me to speak to the dean a week into
February to discuss my options as I did not know how I was going to manage
being far away from home with a serious illness, missing classes, and did not
know if I was looking at splenectomy, chemotherapy or what my options were at
the time. It wasn't realistic to be traveling back and forth to NJ
weekly or that often, nor healthy for my immune system. It was all so new
yet felt like I had been sick forever. I felt alone and in the
dark. I didn't want to put the burden on anyone else but I
needed my family. I never once let any friend
come with me to a blood test or a doctor, because I am independent and like to
do things alone. I didn’t want anyone else to
have to feel sorry for me or make him or her go out of his or her way to do
something. I
didn’t want people to view me any differently or be the “sick
girl”. I wanted to be the upbeat happy Meredith Prescott I always
was and am today.
The dean told me to go home and to take online classes
and finish up the semester at my own pace. I thank her very much as if it
were not for her I would not have graduated. The irony here is that her
sister had ITP so she was beyond understanding, something I think about all the
time. She told me my health comes first and that I should be in a place
close to my doctors and my family. I knew she was right and knew that I
needed to be home. Even doctors had said over break maybe you should take
a semester off. Oncologists who had seen cancer patients assumed I
was taking the semester closer to home, as I really hadn’t fully discussed the
fact that I would be in College Park
all semester. I had to see oncologists, as they see a lot of people with low
platelets and were administering my IVIG.
The day I left University of Maryland,
was probably one of the hardest. I left college, a place that was home to
me. All the things I looked forward to would no longer be there.
Being in a house of 14 girls, partying, going to school, hanging with friends
all the time, spring break, and all the great things about college no longer
would exist for me. They were cut 6 months short. The day I left UMD I
went to get a blood test, my count was down to 9,000. It was ironic yet
predictable on my end that my count had dropped. I was thankful I was
home and knew I made the right decision and stuck with my gut. My old
doctor referred me to a specialist in NYC that said he knew more about this and
she felt more comfortable placing me into his hands. When my parents asked, “what
would you do if this were your daughter”, she could not give me an answer. I
knew she wasn’t the right doctor for me and did not care for her.
I came across a great doctor and ever since then have
done IVIG and Nplate, an orphan drug, which means a drug that is rarely used. IVIG
was once again rough but I knew what to expect.
So far I have nplate injections and blood tests weekly
and it is working well for me. I have fewer side effects compared to steroids,
but it is all a lot to take in. Some doctors told me I am too young to be
on orphan drugs because we do not know the long-term side effects. Some
weeks they are 30, 60, 100, it all depends. You wonder why some weeks
they are higher even on the same dosage and why some weeks are lower. There
are no explanations. There are no answers. I
pray everyday that I can eventually can stop the drugs and be in remission,
which is a count above 150,000 without drugs. I spend everyday checking
twice a day for bruising and bleeding. I contacted all my doctors to inform
them about ITP because they all have to communicate, which is the hardest part
on my end. To get a normal prescription for anything, it has to be
approved by my doctor. Everything that was so simple became so much more
complex.
Ever since ITP, I have so many more issues, which I
attribute to the drugs but mostly steroids. I have higher cholesterol, I
have eye infections, and skin issues which all happened while I was on the
steroids. I am the only person that probably loses weight from steroids,
as my body metabolizes it very different than others. This happened to me
the last time I took steroids and I swore I would never take them again and
never will. Many people with ITP say the same thing, predisone is
the devil.
Although it is very scary to have no control over your
body, I am managing to live with it. It takes a lot of energy to go
through something like this and the hardest part is the lack of awareness and
the life change. No one gets it. People ask so when will you be
better? What’s the time frame? Are you all better? How do you feel? Do
you have cancer? But you look fine? Thanks to those who think I
look fine, as I think I’m rather on the light side, haha. I
wish I knew, I wish I had an exact date of when my remission would begin and
when my counts would sky rocket.
Life isn't that simple or certain. I spent
numerous days asking myself, why me? I’m a good person. People in town
say but you’re so young. It’s not fair. I know that all too well. I
thought, what did I do to deserve this? Nothing.
Good things happen to bad people and I would say the
emotional adjustment has been the hardest part. It came at the worst time
in my life, not that it should have ever come. I had to figure out what I
wanted to do with my life and this disease came at that point where the job
search was crucial. People were applying for jobs and interviewing,
while I was trying to pass school and take care of my health.
I didn't want to fall behind everything I had worked so hard for and
wanted to keep up with everyone else.
On a whim, I applied to graduate school, Fordham University, as this was the only
top-ranked school that I would be able to make the deadline of May 1st to be a
social worker. I wanted to help other people. I want to make a
difference because if it can take simply two seconds of someone’s day to help
someone else then how could you not do it? How much does it take to put a
smile on someone’s face? I have always loved helping people and realized this
was my calling. Where is the empathy from doctors? Do they have
bedside manners? While I know PDSA has done an amazing job, as a whole there is
no support for patients with ITP in local communities. PDSA is the
sole organization that supports ITP.
The challenges don’t stop, yet I won’t stop
fighting. I am not a quitter and I am determined to find a way to get off
treatment and maintain “normalcy”. While this disease doesn't always
end for some, I hope it does for as many as possible including myself. I
am planning a walk in my local community because I think people undermine the
amount that ITP fighters go through and what is like to live with it.
Many doctors don’t realize the extent it impacts your life, as
they aren't going through it. They just give you medication and check
your counts. I refuse to live with this and I hope by planning this walk
I can raise awareness and funding for this cause. At the year mark, I will deal
with the spleen option, but I know the risks with that. Living
without a spleen puts your whole life at risk for other diseases and illnesses. You
live with a compromised immune system with no guarantee your count will rise. Only
60% of patients with ITP that remove their spleen are in remission. Those
other ones are back to the drugs, and even the ones who are in remission, it
can come back years after your spleen is removed.
Nothing in life is a guarantee and everything comes at a
cost. The only positive thing that has come of us this is realizing who
is important to you, what is important to you, and that health comes above
all. It’s hard for me to think I really learned that after being
diagnosed with ITP because I think I knew that before, but maybe I have. Maybe
there isn’t a positive except that I was accepted to Fordham University,
the only graduate school I applied to, which was a decision I made while going
through ITP.
What’s positive and certain is I will make an amazing
social worker, especially going through this. I know empathy at its
finest and always have. I manage to smile and laugh every single day
and let myself cry and vent once in a while, or whenever I need to. I
have an amazing family and support system, which keeps me going. My best
friends helped get me through the roughest days. They are by my side
cheering me on and excited to help plan the walk. Before November, I could
count on my hands how many times I cried, as I am a very happy and positive
person. I would joke about not being affectionate and how I rarely get
upset. As most of my friends would attest to I never got stressed
about the little things, especially those who witnessed me in college. I am
very easygoing and never stressed about a grade or what the plan was. I
just wanted to have fun and be happy. I knew the small things in life
didn’t matter. It sucks to learn it when you
feel like you know it.
However, I still am happy just in a different way for now
and hope for an exciting and healthy future and a high count. I know it
will be exciting, as it is what I make it but I do know I face challenges
ahead. For those who are reading this who need a helping hand, you can tell
me your story and I would love to hear it and be there for you. Life isn’t easy
and the uncertainty is the hardest part. Finding a way to control the
things you can is key! If you pick things you can control that is a great
start, but also knowing that life throws you shit and sometimes you just have
to adjust.
I have realized most, I am my own therapist and know
myself best. No therapist can change your thoughts, only you can, and
only you know how painful this is, the toll it takes on you emotionally and physically.
Although each ITP patient is different emotionally and physically, we all have
the same ground of “uncertainty”. Knowing what your up for and what you
can handle is fine and everyone different, the balls in your court.
To my ITP fellows, remember most importantly you have
control over what goes into your body. Doctors push things for good
intentions, or so I would hope, but remember that it is your choice of
treatment to pick and don’t let them sway you one way or another without researching.
Research each treatment and find out what you think would work best when
given your options. I know there are no good options for ITP and I am
determined to find one.
Lastly, you have to be your own advocate and know that
you are the most influential person in this. You know your body best
and stick to your gut and intuition as that always leads me in making the right
decisions. Balancing everything takes time. It all takes time and this disease
is a horrible waiting game but try riding the rollercoaster upward and not
downwards. Pride
yourself for living each day with a smile as it isn’t so easy and know that if
you ever want to talk about it, especially as a college kid, I would love to
help if any way.
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