It started with me,being tired constantly.Not having the energy,to do anything.We blamed it on my excessive weight gain,but then I started coughing up blood.I got tested for all conditions,that could possibly contribute to it,but everything came back negative.Doctors said“luckely,it’s not something as drastic,as cancer“So we were all happy…Except,true to my nature,I hàd to know more,so I started looking at articles,on Google.People can say,that Google isn’t a doctor,doesn’t have a degree,but if it wasn’t for thìs SE,I would never have known,the reality of thìs monster terminal illness, with no medication or cure.
PULMONARY HYPERTENSION For those of you,who are not familiar with Pulmonary Arterial Hypertension yet,let me just give you a quick update:PULMONARY ARTERIAL HYPERTENSION is a progressive illness,that worsens over time.It is also a terminal illness and there is no cure,or operation to correct it.We,in South Africa don’t have it as good as the USA,for instance,as PAH is still a relatively new illness,most people never heard of it.This means,wè don’t have any medication available and it’s unaffordable,to buy it from abroad.My(usually wonderful)medical aid,doesn’t have any medication available and does not cover,the expensive supportive medication,to treat the symptoms and illnesses caused by PAH.Like severe Peripheral Neuropathy,with legs and feet cramping and twitching constantly and uncontrollably.Nausia and head aches,sometimes for days at end.
PAH,is high blood pressure,from the lungs.The arteries thickens and get narrower,which means the heart,has to work harder,sirculating the blood.In return,enlarge the right ventricle and weakens the heart muscle…resulting in heart failure and then death.
LIFE EXPECTANCY of pasients with PAH,used to be,two to three years and it took two years or longer,to be correctly diagnosed.Now,with treatment,a pasients lifespan,càn increase,to between five and seven years,where a few cases were reported,to have live up to fifteen years,and even one or two,reaching twenty years.
PAH RELATED DEATHS:
Usually heart FAILURE and severe lower respiratory diseases like BRONCHITIS.THERE IS NO CURE OR OPERATION AND IT IS NOR REVERSABLE.
(images – Google)
It was only after knowing,what it was all about,that I asked my Doctor,to send me to a Pulmonologist,600 kilometres in the opposite direction,from the hospital,I was origanaly diagnosed at.It was purely,to make sure that no previous history,can influence the outcome.Well,it came back the same.This time,the specialist took time and explained exactly how it will effect me…..
I got weaker and weaker and my husband had to do more and more.At one stage,I complained to the doctors,that my urinary excretion was way less,than the fluids I consumed.I also complained,about my extremities being swollen(purily the nurse part coming through)my diuretics were increased.
My condition deteriorated and I became totally dependent on my husband.He’d make sure,I have enough to drink and eat,when he went to work.I had a commode next to the bed,as I couldn’t get to the toilet.I had black outs, where I know I’m going to fall,but couldn’t stop myself from falling.I had nasty marks,cuts and bruised all over.
This photo shows the cuts and bruises on my knees,after a black-out.I stool have a really nasty mark on my right knee.At one stage,I fell out of the bed and my husband had to make,a cotside to fit between the base and mattress.
The day I knew I was going to die:I woke my husband and told him,to take me to the only hospital that will be able to help me and knew my history,300 kilometers away.I had serious trouble breathing and it felt as if I was dying.SERIOUSLY… I don’t have experience in dying,but I knew I was dying.He struggled me into the car and off we went,to the hospital in East London (South Africa)He tried to keep me awake,but I was in and out of it.I can remember asking him,at one stage,if we were close and we weren’t even out of the district.I did something,I never dreamt doing and didn’t do again…I told him to go faster,because I’m not going to make it..I don’t remember getting to the hospital,being admitted to Medical ICU….
The last I remembered,was two people holding me down,putting a hose pipe,in my mouth and trying to drown me.I knew I fought and then decided that “they”are going to kill me anyway,so I gave up and I was gone.I started to wake up one morning,as a lady introduced herself and starting massaging my muscles,encouraging me to cough and what have you.I couldn’t speak,or move.Everything was a blur and when I was awake,I wondered if I was in hell and being fooled by satan,otherwise I was abducted by aliens and they’re doing experiments on me.Both ways,I knew I hurt all over.One day,I looked at the nurses around me and thought,that whoever is planning this,is doing a mighty good job of it.I didn’t know,what was going on around me.I couldn’t do ànything for myself.I didn’t realize it,but I was fed and washed and given medication.The first time I realized my doctor is visiting,I thought he was satan,disguised as my doctor,or it was the aliens, that were very good.
It was on one afternoon,when one of the sisters,Sr.Zazi,came up to me and asked me;Do you know where you are?I said no. She asked:Do you know what happened to you?Again I said no.I remember her questions and answers nòw,but couldn’t remember it all,at the time.She told me,that I was in ICU and what had happened.I found out,that all my children had been there,for a week,together as siblings,for the first time since they started leaving home,to spread their wings.My eldest sister said she asked me,if there was something I need to say,to any of them,before I “go” and then she recorded the things,I told all them,whilst I didn’t react to any of them,speaking to me,or touching me.(More on this, in my near death experience-something I nèver believed in,how it affected and changed my life,to follow)My family called every day,but I didn’t recognize any of them,over the phone.Then thìs sister Zazi (see photo) asked me something,that really baffled me….”you are afrikaans speaking… how did you know to communicate with us,in English…??
It took more than six weeks,in Medical ICU and nearly a week,in a medical recovery ward,to just to be able,to walk a few steps.To be able,to try and eat by myself again.To try and brush my hair and teeth again.Things taken for granted by àll of us,everyday.I would never have made it,on my own especially after the my specialists,the Pulmonologist,told my husband and youngest daughter,that there was nothing,they could do for me,anymore and they should let the family come,say their goodbyes. I was on dialisis,for kidney failure,after the fluid retention,I complained about.They drained nearly 40 kilograms of fluids from my body.I lost more weight on fat and fluid,after my discharge,from hospital.
2016:A week before my diagnoses and already suffering heavily,with fluid retention.2018:The week after my discharge.
2020:Taken a month ago. The staff made me feel special and I’m sure,they do it for every other pasient,but I love those people and sometimes I catch myself,thinking of what we all went through,for me to be able,to write thìs….
The person 2nd from left,was the head matron of the ward(got promoted,in the mean time)and she was my Chief in charge.
2nd from the right is Sr.Zazi,the sister who told me all about my ordeal.
In the middle,is Idelette,a nurse who àlways sang,with the most beautiful voice, while working and I called her“The canary of the ward”
I also kept in contact,with especially one of them,who tried her best,to make my stay in Medical ICU,as comfortable as possible,since my family were so far away.
Because I couldn’t remember her name,I called her “tower -to-tower”(T2T)as her high receptionist’s counter,was across the passage from my room.
Allthough I can’t remember all their names,I càn definitely remember their faces and the part they played,in my recovery.4th from right is Sr.Jackie(we met again,at my last hospital visit)
Middle front:the unit manager,Sr.Heather Purdon and behind her Susan.Most of them are not in the medical ICU,mostly due to promotion,but my “T2T”(Hazelene)is not going anywhere…
I was given permission,to publish these photos,by the people in the photos
- I dedicate the following video to all of them….
