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| First international trip to Japan 2010 |
My PH story starts when
I was six, sometime in 1995. I suddenly started having fainting
episodes and was quickly diagnosed with Epilepsy, having uncontrolled
Tonic-Clonic seizures.
Within
a year I developed a chest infection/cough, that wasn't going away with
antibiotics. The local doctor sent me and mum down the road to have a
chest x-ray. I don't remember specifics but I know that it landed me
pretty quickly in the Royal Children's Hospital Melbourne on the Cardiac
ward. Throwing my family in to chaos with my two younger sister being
looked after by my grand-parent, while mum looked after me.
Being
diagnosed with "Primary Pulmonary Hypertension" Functional class 4 (now
known as Idiopathic Pulmonary Arterial Hypertension) was life changing
to say the least. This diagnosis didn't just effect me emotionally and
physically, but my entire family, my circle of friends, my school life,
after school activities and general living. I was initally started on
"Diltizem", and given a 5 year life expectancy. As a 6 year old I was
blissfully unaware of this.
I managed to go to
school full time, partake in sedate after school activities and play
with my 2 sisters. If I forgot to take my medication, or refused (as i
did in the beginning), I could feel the difference, and would often have
a seizure as a result.
Around the 5 year mark I
got really sick. I was unable to start high school, I was in and out of
hospital trying to manage the symptoms. The addition of a few
medications and eventually oxygen.
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| Hosptial stay 2001/02, recently started Epoprostenol and looking much better already |
I tried
"Beraprost" for a short time, but this made me feel sick three times a
day for about thirty-sixty minutes after each dose. It made me feel
isolated from my friends as I had to go to the school sick bay to have
it during class, and rest until the side effects wore off. It also
didn't make me feel much better.
This period
is very vague to me and everything sort of blends together. I know I had
multiple seizures at school, ambulances were called on multiple
occasion, late night trips into the city to get admitted quickly and
always extra drugs and bloods and tests. Mum and I spent countless hours
stuck in traffic on long stretches of road on the way to the hospital,
we played many cars games, but often I was vomiting or simply too
lethargic to play.
Around this time I was
placed on the transplant list waiting for a heart and lungs. I was too
ill to go to school at this time, nothing was working. I made it through
the year using a wheelchair, oxygen and many many medications. I was in
heart failure and the rest of my organs were soon to follow, fluid
retention, vomiting and weight loss among the symptoms. I was palliated,
something i wasn't really aware of. New teams of medical professionals
were seeing me all the time to help with one symptom or another, there
was a constant stream of consults, reviews and medical rounds. I had
privileges from hospital, and small windows at home.
Early
2001 I was given the green light to start this magical, mystical drug
from the US (Epoprostenol) as well as oral "Bosentan" (plus my cocktail
of "normal" meds). Conditions applied, a fair few. Mum had to be trained
in making the medications, and had to commit to making it up from
powder to liquid every single day. We had to be self caring with a PICC
line (a semi-permeant line directly into the heart.) I had to do any
test they requested (6 minute walks, ECHO's, ECH/EKG, bloods and Cardiac
catheters). I was so unwell I was not yet able to have the permeant
line, so I had a temporary one inserted with light sedation.
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| Kakadu National Park 2014 |
The
temporary line proved to last quite a while. By the time the 2nd one
had packed it in, I was well enough to have a bit more sedation and get
my permanent line. This was a pretty good indicator that this drug was
working. I made leaps and bounds from here. I came off the transplant
list, I was no long made palliative and I slowly started going to
school. I had missed a few months of school and had to be slowly
reintroduced. Luckily with a supportive school, and some great friends I
got back into it.
The combination of drugs has
changed a bit over the years,. I'm no longer in any organ failure, and I
take a portion of the drugs I was taking. I take 2 medications for PH,
Epoprostenol and Sildenafil. However, I do take a few a preventions of to
make life a little bit easier with symptoms.
It
took me a very long time to come to terms with my illness and accept it
as part of my identity, but not something that will define me. I can thank the use of this drug for the life I lead now.
I
work full time as a paediatric cancer nurse, I ride my bike 7kms each
day to work and I have the travel bug. I have it in a big way.
I
still have to undertake the same tests, just much less frequently. I
can't swim in the ocean/pool, I can never be too far from a hospital and
I have to carry around a pump everywhere I go 24 hours, 7 days a week.
BUT I will always try to do this with a smile on my face and a positive
attitude!
I've been to over 20 different
countries and can never wait to plan my next one. Of course I have
limitations, but I'll take what I can get.
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| Repackaging 3 months worth of medication for my upcoming holiday |
My
next trip is the biggest and the scariest and the absolute most exciting
thing that I have been able to achieve since diagnosis. I have spent
the last 6 months planning everything I might need for a 3 month holiday
in Sweden and Europe. There is about 40 kg of supplies and 4 kgs of
clothes.
This is a recent development as I
switched to a more stable version of my drug. It means more freedom and
less volume of medications (Thanks Veletri!).
It
has been a lot of preparation, research and challenges at every corner.
I started to document my issues with travelling with a serious chronic
illness and intend to continue while I travel.
I
know I've had a hard life but I know its also been full of interesting
moments, filled to the brim with love and most of all its been
surprising. When you exceed the doctors expectations by 15+ years you
learn to live life to the full.
There are so many people who help me with my challenges. I feel this is the key to my success.
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| Stonehenge England 2013 |
My blog can be found at https://www.tumblr.com/
