PAH:The silent killer

As promised,in my previous post(“February:month of love and life”)more about my own life changing experience,living with Pulmonary Hypertension.

I’ll just give a little background, for those who didn’t read my previous post…

I said,I didn’t know,about my family standing around my bed,in the medical ICU room.I couldn’t have known,in any case,as the doctors told my husband and youngest daughter,to let the family know,they must hurry,to come say their last goodbyes,as there was nothing,they could do for me,anymore.

The fact that I felt,as if some people were holding me down and trying to drown me,was actually true,both ways.My lungs were filling up with fluids,very fast and that was the drowning I experienced.The part, where I felt,people were holding me down,was to insert a intravenous drip in my neck,whist the others inserted the draining tube in my groin.It was also true,as I was putting up such a fight,which turned out to be the fight for my life.Like I mentioned,about near death experiences….let’s just say I wasn’t a believer.

I’ve been in hospital,so many times and I have been for a few operations.After one operation,in the recovery room,they struggled to get me alert enough,to breathe on my own.I’d just fall asleep and then forget to breathe.That was it…

In my “vision” I woke up and found myself hanging, by only one hand,over a precioice.I could feel emense heat and the flames leaking up the sides of this pit.The deafening,screeching noise,of people moaning,groaning and begging,to be relieved and saved,was overwhelming.I could see millions of “people” far beneath me,reaching out to me.Their faces sort of translucent….you could see them,but not “see” them.The most chilling part,was those leaking flames all around and those hand reaching for me.I couldn’t make out,if they were trying to get hold of me,to pull me in,or to grab hold of me,to get out.It was steamingly hot and I felt my grip weakening.

Then I prayed out loud”please dear God,help me”it felt as if this big “invisible” Hand got hold of the hand I was hanging from….

And then I was on top,the firy hole behind me closed up and heat gone.I could still feel “A” awsome,Heavenly Being close to me and I felt at peace and could feel His Presence.I just knew it was God Himself.Sometimes I’d wake up and didn’t know where I was.I’d close my eyes and thought,if I fall asleep,I’ll feel God close by again.I’d wake up and a picture that came to mind,was of a window and a beatifull flowerbed in front of it.Not necessarily,what I would’ve liked before.I couldn’t wait to drift off,because there was definitely a Presence,behind that window keeping me calm,“telling” me not to worry,that everything wil be okay.

I recovered remarkably well and way too fast,for the doctors,to understand….The doctors(incl.my local doctor)call me:

THE WALKING MIRACLE!!!

The years,leading up to the actual hospitalization,was also something else.The doctors tested for èverything they could think of,to find out why I was coughing up blood.I was one of the unlucky ones,that was diagnosed much later(as much as two to three years)according to the doctors,that diagnosed me.

I was diagnosed in 2016.Because it hides behind ilnessess,with the same signs and other illnesses,so doctors tend to stop searching,after testing for Cancer,Tuberculosis,Blood clots…and everybody is so relieved,that it came back negative.Hence the name:silent killer.

Nobody realized,that my life was falling apart,right in front of our eyes.PAH wasn’t “real” and nobody’s going to die,was the answer,the minute I started guiding the conversation,in that direction.Unknown to any of us,I was starting to fall in depression.I couldn’t get out of bed and I just wanted to sleep.See,the way I felt, was that I’m going to die much sooner,as what I’m supposed to,so why worry.I ate what I wanted and drank every night.I might just as well,enjoy my life,the few years I have left.

I didn’t dare to discuss my illness,with àny if the family members.They didn’t know,the severity of thìs monster illness and they weren’t interested,in finding out more.I downloaded articles,that explained the whole illness in plain English.They didn’t look at it and never commented.

One night,while my husband was working night shift,I just started to cry uncontrollably.I started to write a letter,explaining how much their ignorence hurt.I knew they felt,that by nòt saying anything,it will most probably go away.Nobody said thàt name and nobody discussed it.I didn’t give them the letter,but spoke to my daughter and then she spoke to them,about it.It went fine for a while,but we’re back to square one.I was diagnosed in 2016,with two or more years behind.

Except for the other two years,this is my 4th year,living with thìs monster,terminall illness.I have my off days and sad days,but then I have some days,that I can do so much.

BE AWARE:

VERY IMPORTANT,is to always be aware,of what’s going on with your body.Like testing for lumps,to prevent Cancer from invading,learn more about this illness.Don’t be naive and think it couldn’t happen to you.I didn’t know,of this illness’s existence,until diagnosed with it……don’t be uninformed.

If you have any suspicious signs or symptoms,like shortness of breathe,after performing the simplest tasks and/or coughing blood that can possibly be PAH,request to be tested for it.It can add more years to live,if detected earlier.