What It’s Like To Be An ARDS Survivor ( Acute Respiratory Distress Syndrome ) Living With POTS

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , /

What it’s like to be an a RDS survivor
and a Potts patient hi I’m Amanda van der Gulik from www.CleverDough.com where I
help families and entrepreneurs figure out ways to be successful doing things
they love to do raising a healthy wealthy mindset and raising children who
are smart with their money but today I want to talk about something completely
different I am an ARDS survivor which stands for acute respiratory
distress syndrome in other words I was in a coma three and a half years ago and
during that time and I went into a coma because of pneumonia during that time my lungs developed a ARDS they were unable to work for themselves they gave up on
me luckily the doctors didn’t and I am
still here with a 20% survival chance though I did well anyway I am also
sufferer of pots which is and this is the difficult one so let me just read it
for you postural orthostatic tachycardia
syndrome hot syndrome in other words there are tons of symptoms that go along
with it and I don’t have all of them but I have a majority of them things like
not being able to sit up straight right like what I’m doing right now
you don’t actually probably notice but I’m actually having to lean on a lot of
things in order to sit up straight if I wasn’t leaning on something I would
faint I’m not able to just stand up straight without holding on to things
I’m actually known in town as the pole lady because I walk around with hiking
poles just so I can stay up straight I need to lean on walls when I’m working
as you can see I need to have my my feet elevated because my my whole
cardiovascular system isn’t strong enough to pump the blood back up again
to fight against gravity without completely draining myself of energy and
as this video continues you’ll hear that my voice will slowly start to change
so as an ard a survivor what is that like well first of all it’s great
because it means you survived so that’s really awesome it also means a lot of
changes breathing is always difficult because my
lungs are so scarred I simply don’t get full oxygen anymore
but I’ve been able to build up my my muscles my abdomen my diaphragm my lungs
I’ve been able to build them up so that I can get enough oxygen to survive if
not fry and that’s okay and I intend to continue to build because I’m a very
stubborn person really so what are a couple of other things that have had to
deal with as an a RDS and pop survivor so one of the things that I have to do
is I have to walk which is great except that walking is difficult but I have to
walk because it helps open up my lungs and that’s why I have walking poles
I simply cannot walk without poles for a long distance of time I can do short
distances just fine little Sprint’s kind of thing not running spreads like little
spurts but if I do too much I’ll start to get weak my balance goes completely
off I honestly look like I’m a drunk person
because I’m like all over the place and it’s something so little as holding the
walking poles helps just to keep my posture right so I can breathe properly
but it also takes the pressure off of my legs so that my body doesn’t have to
pull the blood up quite as much I can now use part of my arms so I’ve actually
built very strong arms I just great but yeah that’s one of the
things if I don’t walk I fall backwards very quickly and I don’t mean like fall
backwards but I mean I go back I become worse
really quickly and I noticed this dramatically in the summer when it’s
really humid because humidity sticks in my lungs and with all the scarring that
I have in my lungs having the rest of it locked with humidity means I don’t get
much oxygen at all and that means I don’t have the stamina to walk plus I
can’t be outside because the humidity it’s this horrible you have to work to
stay healthy you can’t walk because you can’t breathe
so summer is art air conditioner is on all the time I really get sick and I
have to say my kids really get sick of always having a cold house because it’s
really really gets to you after a while to always be in the cold and always have
to wear warm clothes but it means I can breathe and my children love me so much
that they just put up with always being cold they wrap themselves in a blanket winters it’s the other extreme
so when winter hits because we live in Canada it gets jammed to like minus 20
minus 30 minus 40 and it’s really dry cold and my lungs go and it’s really
hard for them to relax to get the oxygen in so summers to get breathe cuz they’re
stuck behind the humidity winters they can’t breathe because it’s so tight and
you can’t relax so luckily I don’t suffer from hay fever thank goodness
because spring and fall are my favorite months now because I can actually go
outside and I can breathe and I almost feel like my normal self almost until I
you walk for five minutes and then realize I’m not my normal self but when
I walk here at the door I feel like my neurons up and it feels really great for
those five minutes other things that have been affected
which are not necessarily a bad thing I don’t do as much housework anymore now
by not being a bad thing I mean yeah I don’t do as much I can hoard but it
doesn’t dirty which is I have wonderful children and a wonderful wife who help
but simple things like vacuuming is ridiculously difficult for me
sweeping again anything that we that needs my body to work below the waist or
above the head is ridiculously difficult I have to work in this area so I can
work in this area with caveats when I’m working at my desk I have to have my arm
separated you can see right now I’m holding myself up
but it’s for a short period of time before I have to put them down to let
myself recover it’s kind of like if I use this energy I can’t use this energy
at the same time so I have to pick and choose and then I can relax and use this
energy again so emptying the dishwasher I can do the top rack to the stuff
that’s in this area so I can but unfortunately yeah the cutlery is in the
bottom rack but the drawer is here so if somebody lifts the color up for me then
I can put it away grocery shopping tremendously difficult
and it’s something you’d never even think of the grocery shopping itself is
walking so that’s actually not too bad although tiring when I say not too bad
I’m moving therefore oxygen is circulating and I can breathe so this is
a good thing my body’s exhausted and then it’s harder
so yeah to give or take but the really exhausting part is actually at the cash
register lifting I started going to say ingredients with us as I’m king
decorator or it was before this lifting groceries onto the conveyor belt and
taking up the packing into the bag is tremendously difficult so I don’t shop
by myself anymore I have to go with my kids or my wife and
they have to do that part for me they carry the groceries in they put the
groceries away my family have to do an awful lot of work because I’m no longer
able to do it I can do short amounts I could I can clean the house for like
five minutes and then I have to sit and rest for like an hour
so it’s not very efficient it’s not very I can’t cook anymore because baking and
using the stove creates air that becomes humid and oily I get stuck in my lungs
and so I get delegated to the living room we close the curtain across the
separation between the living room in the kitchen and I sit back with my
Himalayan pink salt inhaler and let the bukas let go and cough it up so I can
breathe again is it great by the way I’ll put a link in the description below
so much better than my ventolin was for me I only use ventolin once a year now
for my pulmonary function test because I like natural better and I find it more
effective it’s not as quick but it’s more long-lasting and it’s healthier no
side effects other than the fat because you breathe in through your mouth and
out through your nose it kills all the germs and bacteria in your life never
sick which is a very good thing because that’s another thing I can not get sick
if I get sick I backtrack tremendously it takes me a very long time to get up
to whatever level I was before I got sick
and so I have to stay healthy so I drink my green juices
I use my salt inhaler I’ve learned to have to pace myself which is crazy
because I’ve always been a go-getter and I like to just get things done but I
can’t anymore so I have to pick and choose there are so many more things that you’d
never even think of no simple things like I love to sing now I have to pick
and choose and sing one song I can’t just sing for hours and then
like I used to I did tons of musical theater I can’t dance anymore you know I
managed to do a couple of little things since but past numbers hold me I lean on
things like you find ways so now I help with friend of house I help welcome
guests as I’m leaning on my poles against and I have someone beside me
with the program so they can pass it the programs because first of all the smell
of the programs will set up my lungs and secondly doing that will exhaust me so
that’s what it’s like to be an ard a survivor is it worth it absolutely and
will I get better I think so I don’t care what the medical industry say I
have a firm belief that you can be what you believe you are and so I’ve decided
to get better and one day I will in the meantime take a look at my playlist on
being in a coma the dreams the crazy dreams I had and please take a look in
the description down below because this whole series is to support a woman who
made a huge impact on me Claire Weinland who was a statistic fibrosis
and passed away last summer but leva left a wonderful legacy and a message
for us to live a life we are proud of her documentary is coming out soon of
her life and I highly recommend if you need inspiration in any shape way or
form in your life to watch it she was such a blessing and anything I can do to
help support her foundation I am blessed to do so thank you

2 thoughts on “What It’s Like To Be An ARDS Survivor ( Acute Respiratory Distress Syndrome ) Living With POTS

Leave a Reply

Your email address will not be published. Required fields are marked *