The Downs and Ups (in order of appearance)
THE
DOWNS
It
was indeed a very cruel way to start 2018.
I
guess the misery already started taking its course in late 2017 when
a dear friend of our PH community lost her fight with PH and died.
Unfortunately
this wasn't the only fellow PHighter.
Even
if it sounds like lacking respect – which is definitely not
intended – it felt a bit like this „political incorrect“ nusery
rhyme called „Ten Little Injuns“.
What
I mean to say is that 2018 started with bad news about the passing of
PH patients almost every week. Every few days someone of the
community posted something about someone losing her/his fight with
PH.
At
first it was just sad hearing about it. Then it turned out to affect
people who were active members of the community, people who were
taking part in the discussion and some of them were online only a few
days before the sad news. This was really shocking. Shocking as it
seemed to have happened without a warning. Devastating because this scenario got closer to yourself than you'd prefer.
Some
fellow PH-friends had very unstable health issues or were already
listed for a TX when their passing happened. This is of course
neither a justification nor an explanation why it happened to THEM
instead of someone else but still … I guess we all tend to forget
at some point HOW seriously ill we really are since we have superb
medication which do support us so much and help us lead such a better
life. Also, most of us have dedicated and perfect PH specialists who
monitor our figures and if there's a worsening in our status, they
will try to do all that is humanly possible to improve or escalate the therapy. That's
why most of us probably think, something like this could never ever
happen to them, at least not at this point.
This
has nothing to do with being naive or unrealistic or that we don't
understand the gravity of the situation/condition we're in. It's
simply some sort of self protection. A way to cope with the
psychological stress we're often in. Life is cruel enough. But when
suffering from such a complicated and rare disease like Pulmonary
Hypertension, no day is like the other and in fact when you go to bed
at night, you don't know what the next day holds in store for you –
whether it will be a good or a bad PH-day.
Anyway
… I'm running off the track, sorry for that.
What
I meant to say is: many of us feel relatively good, well – at least
given the overall health condition. We can be grateful to live in
Germany with supportive health insurance, medication for everyone
(even the expensive therapies such a Trepostinil) and to consult the
physician of YOUR choice.
So
when you suddenly hear of the passing of someone close, you realise
how fragile you really are and you start to fear that next time it
could happen to your best PH-friend or at worst – to yourself.
There
are several ways to deal with these kind of news, everyone deals with
it differently.
Some
tend to hide and burry themselves, others act like nothing has
happened and that they are indestructable or immortal. There is no
right or wrong.
The
only important thing is to realise about the severity of this disease
early enough to do YOUR OWN part to have the best chances to live a long
and at least a relativly uncomplicated life.
I
would lie if I'd say that these shocking and sad news didn't leave me
untouched and I can confess, that I was pretty scared and nervous
myself. It also left me numb for a while and I felt a bit paranoid
everytime I had side effects from my meds or other minor ailments.
Yeah, I know …. crazy but then again, it's just human nature, I
guess.
But
luckily 2018 wasn't made of bad news only, in fact the positive news
and events ended up to make the majority of the last year. Thanks for
that.
The
Ups
Maybe
it was due to the shocking news of the passing of around 10 Phighters
our PH community was facing at the beginning of 2018 which brought
everyone closer together? It surely was also other circumstances
which happened behind the scenes to motivate many people to take
sides even without trying to persuade them to do so. I reckon many
people just noticed the vast injustice.
Either
way … all this accidently helped a lot to extend the community and
the make the dealings with one another even more familiar.
Sometimes
it really amazes me how complete strangers, people with the same
disease you have never ever met in person kinda become your everyday
friends, your partners in crime, your shoulder to cry on or the
people you can share your achievements with. They will cheer for your
blood test figures, they will throw their pompoms for you when you've
reached a new personal best in the 6MWT and they will just be there for you to
just keep their fingers crossed when going through a hard time.
But
with that in mind, sometimes these „internet buddies“ become even
more at some point.
We've
had some meetings this year with our community of people. First a
nice BBQ in June in the Ruhr Area in middle of Germany with around
25 people, then later in September a meeting with a Harbour Cruise in
Hamburg with around 17 participants. More meetings planned for 2019
as we noticed, that others who couldn't make it to these Meet Ups in
2018 were almost begging for encores in 2019 so that they could take
part as well.
A
positive „side effect“ from meeting up with others was how the
overall way of communication, the warmth of which people deal with
one another took to a new level of encouragement, respect and
understanding. This is really amazing.
These
meetings also resulted in even more regular active users. More people
who now have the courage to give advice to others, no matter if these
people are „new“ or „old“. Also, more people who tell from
their personal point of view, give their personal advice or explain
what they've been through.
Maybe
it sounds schmaltzy but it's like one big family, everyone is there
to support one another.
Honestly,
I never thought that this community would evolve so quickly and in
this direction.
The
group itself gathered momentum – no guidance needed, so it seems.
I'm
not here to make the grass grow greener, we're not there to make the
sun shine brighter or to take other parties jobs and do „politics“
or lobby work.
I
am/we are solely interested in helping other people who just got
their diagnosis and are now struggling with setting up their new
life. The main aim is to make these people realise that they are not alone and that there is a
way to live a life with Pulmonary Hypertension. Nothing more, nothing
less.
So
anyone reading this in search of help or advice from fellow patients
maybe you'd like to visit our website at:
Of
course there were also „personal highs“ resp. improvements in
2018 which I'm really grateful for.
Sometimes
you really have to listen and take the advice from others. Luckily I
did!
Extended
therapies or additional devices are not always restricting your
quality of life – sometimes it's right the opposite. You just have
to change your point of view and accept changes to feel better in the
long run.
These
„changes“ were at first the cPAP therapy for me.
After
having massive sleeping problems in the early half of 2018, I made an
appointment in the sleep laboratory and I was diagnosed with severe
sleep apnea with around 70 breathing interruptions within one hour of
sleep. That's scary! After getting adjusted to the sleep apnea mask
in August and getting a follow up check in October it turned out that
I now have „only“ around 7 sleeping interruptions within one hour
of sleep. Massive improvement!
I'm
really curious to see what an effect this therapy will have on my
heart when having my echocardiography in March this year.
Another
extention to my therapy is oxygen at nighttime, as it was also
discovered while being at the sleep laboratory, that I desaturate
when being asleep. My oxygen level is still moderately okay at
nighttime, nothing really to worry about but still … it won't do
any harm, it doesn't bother you much at nighttime but will instead
support the heart and body, when I get substitutional oxygen.
I'm
on nighttime oxygen for 3 months now and like with the cPAP therapy,
I'm eager to see if it affects my heart in a positive way.
The
newest and also most important and effective addition to my therapy
is physio therapy in form of „lifting weights“. Honestly speaking
you can't really call it lifting weights, as the resistors are so
minor, at least for someone being healthy. This special „lung sport
programme“ was set up by the PH chief physician and the physio therapist
at my local PH specialist center. Other PH patients take part at a
course once a week, I have special training twice a week for an hour
each, also to help losing some weight, as my BMI is far from the
magical TX-marker. Not that I need to be scheduled for a TX anytime
soon nor that I need to be listed. But it can't be bad to work at my
patient's compliance just in case.
This
training is amazing. I really, really like it and have less body ache
from the side effects from the medication now. The main target is
muscle building or at least to keep the current muscle at work and
preserve them from degeneration.
Besides
this sport programme, I also have nutrition counselling and I feel
really proud to say that I actually lost some weight already. It's
baby steps and really hard work, as there's not much room to juggle
with food or sports to lose much weight but still … you have to
take every chance to do a little bit. At least I'm currently still
motivated to stick to it, let's see how long this will last …
As
you can see, 2018 was positive in many ways.
Surely
sometimes you feel gloomy or misunderstood or treated unfair. It's
completely okay to surrender yourself to these feelings from time to
time. But one should never forget that it's ONESELF who's in charge
of your life and what you make of it.
Along
these lines: Make 2019 YOUR year! Make 2019 the best you can.
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