The
longer we live with the diagnosis, the more anxious many of us get
I
got my IPAH diagnosis in April of 2016 after having to some extent
most serious symptoms of breathlessness, fluid rentention in my legs
& ankles, weight loss due to the heavy working heart and
sometimes even syncopes.
I
was adjusted to several new meds in May 2016 and shortly afterwards felt a lot
better. I also had a supporting rehab which was specially designed
for PH patients. Around a year after being diagnosed I was introduced
to triple therapy (incl. Macitentan, Tadalafil & Trepostinil via
an implanted infusion pump) and within no time, my overall stats got
a lot better with each follow up medical. The most amazing thing
which happened after being introduced to Trepostinil was that my
right ventricle shrunk by a third which was a MASSIVE achievement!
With
my last check up medical in November 2018, I scored my current
personal best in the 6MWT and managed to „run“ 535 meters but
being completely shattered afterwards. And I mean WORN OUT!!! Run
over by half a dozen trains.
I
hardly ever felt the psychical stress before. I had no problems going to the
follow ups, in fact I was even sometimes excited and nervous in a
positive way because I was wondering whether I would be able to
improve my results once again. I was hungry for new achievements, for
better blood figures or even better results in the TTE (heart ultra
sound). Until now, I was lucky and blessed that my figures got better
or at least remained stable (with only one exception of a 6MWT when I
walked 10 meters less than before).
I
often talk to a friend and she tells me that she gets so very nervous
even weeks before the follow up date. I couldn't understand all the
hassle and fuss about it. I was always completely relaxed and
trustful that the medication would do their best and keep me stable.
She
often tells me „Wait for it … you'll get there as well!“
Well,
I guess I am there now … and this feeling is awful. It's a mix of
paranoia and anxiousness.
Basically
I am feeling alright. I am even doing sports and I do have a feeling
it is helping me a lot.
Despite
all that, everytime there's something aching and you THINK your
heartbeat is faster or stumbling you start to worry and paranoia is
approaching. All this can put you under a lot of stress, which is
surely not supportive for your blood figures or overall well-being.
But
you just can't help it.
PH
is an incurable disease. It's progressive. And with this awareness in
mind, it's no surprise that you start to feel paranoia or anxiousness
at some point.
The
funny thing is, I always thought that I wouldn't be successful at the
6MWT but each time until now, I managed to improve my performance
which is some kind of a curse also …
It's
a curse and burden because you put yourself under so much pressure
that you kind of need to prove to your physicians, that you can do
better or at least, you can hold that score.
If
you „fail“, they start asking questions like „Are you feeling
worse?“, „How's you're breathing going?“, „Maybe your NYHA
class needs to be adjusted“, „We need to check on your risk
assessments“, not to mention possible questions about the
enrollment onto the lung transplant list …. the list goes on and
all these questions make your tummy turn upside down.
The
end of the story: with the next follow up approaching, you start
feeling nervous weeks or at least days in advance, you're lacking a
good night's sleep and you just feel awful.
I'm
sure, all this can actually affect your figures and results. But
that's just my opinion or maybe just an excuse for possible poor
performance.
I
reckon that even with all the awareness of Pulmonary Hypertension and
its severity, at some point we all start living in a bubble, in a
parallel universe. We are provided with the best possible medication,
with supportive and emphatic physicians and all this results in a
more or less „careless“ living. We feel great, well mostly. One
gets humble and grateful for being able to live, even if living is so
much different to what it was like before diagnosis.
So
it's completely understandable that one can get pretty nervous if
there's something not running smoothly and we're brought back to the
„real world“ and are reminded once again how serious, progressive
and terminal life with Pulmonary Hypertension is.
My
next follow up medical with TTE, 6MWT, blood tests, lungfunction test
and BGA will be this coming Thursday (March 7th) and yes,
I AM nervous!
Fingers
crossed for me, that I can at least hold all my stats. I will
possibly update on the figures.
So how do you feel about it all? Do you feel similar? I'd like to hear your opinion on this topic so feel free to reply. Thanks! :)
