My mind kept running in circles today…usually I’d have so much to tell,but today,my thoughts got stuck,on A TERMINAL illness,called Pulmonary(Arterial) Hypertension.Pulmonary meaning “lungs”,Arterial “arteries” and Hypertension means “high blood pressure”The only difference is,that this is high blood pressure,of the lungs.This boils down to,not being able,to use usual medication,prescribed for blood pressure.The heart has to work harder,to pump the blood,which in turn weakens that part of the heart muscle and it “sags” The rest has to work harder but the blood that goes in, doesn’t come out at as fast,as the in…This also means,that the lungs have to work harder…One terrible,vicious cycle.
See,I was diagnosed with this illness,after many, many misdiagnosis.I went for endless tests and blood works…
About four years ago,I realized that if I cough,my mouth tasted like iron.Now,being a nurse,you’d expect me to inspect,which I did.I struggled,to get some sputum out to see…one day I managed and there was a red bloody mucus blob,on the tissue!!I just couldn’t tell anybody and did this a few times,per day,for about a week.Then I told my husband.The doctor did tests and after nearly three weeks,the results came back…The doctor was relieved!!At least,it wasn’t the usual lung problems,like Cancer and Tuberculosis,or blood clots…I was sent to a Specialist Physician and this Professor diagnosed me with PAH.Nobody explained anything and I had to rely on Google,for answers.I then urged my GP,to refer me to a Specialist Pulmonagist and he too,diagnosed me!!I already knew the prognosis and yet he answered my questions and explained everything in detail.”Google”didn’t lie…
This happened,when my eldest sister turned 60.The four siblings were present, but I was far away from there.We didn’t tell anybody about this illness and also not,that doesn’t get diagnosed correctly,for some time,because of the same signs and symptoms,as other illnesses.Mine was misdiagnosed,for about two years already.Then it was back to my trusted friend “Google” again….Prognosis is bad,vèry bad.Life expectancy was only three to five years,after diagnosis,especially in cases like mine,that was diagnosed late.Not that it was anybody’s fault….and not that anything could’ve been done,to prevent it.There is currently nò medication,treatment,òr operations,to reverse this illness,or to correct it,or even just slow it down a bit, in South Africa and as far as I could find out,there is limited supportive medication available,in USA,for instance.We’re even worse off,in South Africa,as my husband’s(usually good)medical aid,doesn’t pay àny of the medication,to relief the pains and aches,accompanying it.My Restless Leg Syndrome is much worse and I don’t have feeling in my feet and lower legs,but there is nothing wrong,with the blood sirculation.I have to take medication,for water retention,which contribute to the dreadful cramping,of my legs at night.
It was so difficult for me,to talk about this, to any of my family members.They were totally in denial.The moment I dare mention my illness,I was silenced,because they didn’t want to hear about it.It put me through depressive stages.I ended up in St Dominic’s medical ICU,for six weeks,fighting for my life(another chapter in my life,for another time)My eldest brother died,just over a month ago,when all of us knew,it was supposed to be me.He turned sixty,in October 2018…he’s just over two years younger than ou eldest sister….it means that this year I’m in my fifth year,of this illness.Why said “luckely it’s not cancer,tuberculosis….?There ìs treatment and operations, to prolong lifes with sometimes twenty years and more.I know, because I nursed in the Geriatric(mainly)Cancer Ward,for nearly three years!!!
It bothers me a great deal,as I still have so many challenges,I’m exploring different things,I never thought to try,like this “blog/site”I also want to try my hand,at freelance writing(essays/personal essays,life’s experiences) and I want to do computer courses…But first I have to wait,to upgrade,to be able to do so much more,on thìs site.I filed àll the advicetios and tricks,that WP and WP/S sent me.
I wondered why a busstop was referred to,as a “terminal” and why deadly diagnosed illnesses,were referred to as “terminal”….I started coughing again,a week or two ago.It was just an uneasy cough and today I realized,that it’s becoming more often and closer together…Luckily no blood,though…not yet.
TERMINAL:it’s a STOP!!