Sickle Cell disease
Sickle-cell disease (SCD), or sickle-cell anaemia (or anemia; SCA) or drepanocytosis, is an autosomal recessive genetic blood disorder characterized by red blood cells that assume an abnormal, rigid, sickle shape. Sickling decreases the cells’ flexibility and results in a risk of various complications. The sickling occurs because of a mutation in the Hemoglobin gene. Life expectancy is shortened, with studies reporting an average life expectancy of 42 in males and 48 in females. [Wikipedia]
Few weeks ago
Was not feeling very well since I came back from HK. Pain in the chest, back, and ankles. I thought it was a kind of normal because of the sickle cell disease.
HK should be the worst country worldwide to live in for people with this disease because of the rate of humidity, and each time in HK is kind of reducing my life span.
As simple as that.
A kind of Russian roulet.
As I found a temporary job, I had to go to work while I was suffering of course. Even when I was already prescribed with the patches of morphine.
Even with the strong pain killers, I’m taking them on a daily basis.
This job was killing me. I have to come back between lunch time to sleep and rest my back. Then it was quite ok. But… But suddenly when I return from my lunchtime, I climbed up the stairs and… couldn’t breathe.
Someone cut the air suddenly.
White flashes, heart beats super fast, cold, warm. Then back to normal.
WHAT IS THAT?
I took some days off, anyway I was scheduled to see my doctor on the coming Friday so just 1 day left to see him. 10 am. “Let’s get up to take my breakfast.” Standing up. After a few minutes, again the same symptoms but MUCH stronger. Dizziness, no air at all. “But a little can pass,” I thought… The situation was blocked because I needed to take my breakfast in order to take my pain killers, etc. But I could only stay in my bed in order to… be able to breathe! (I finally think it’s important in life to be able to breathe.)
Otherwise it would be like a fish dying with an open mouth in the air. It was serious this time. If I stood up, I only had a few minutes to act before it came. And the phone was ringing, in the next room. I couldn’t pick up, but I needed to go to take it to call someone for rescue.
It was kind of funny. No, I was joking – it was not. Well, just a little. Ok.
The day I almost died.
My doctor was waiting for me in the hospital. Ambulance was arriving. I couldn’t stand up anymore without getting sick. So I would travel lied down. Fuck the style for this time, right?
Arriving finally in my room. Well, I was fine as I didn’t have to stand up! But I had too afterall… for giving test samples… If you understand what I meant.
It means you have to BE in the toilets, to do this stuff. Well, with help from the nurse, it shouldn’t be too much problem. Doing quick, a little pee for the sample, and then, I hadn’t much recollected what had happened.
I said to the nurse, « To the bed, QUICK!!!! »
I remembered the image of my bed coming but not the 30 minutes after. That was the time for my doctor, the nurses, specialist of intensive care to get all around my bed to save me. Had no pulse, no heart beating. Switched off.
When I woke up, all was blur. I was a fish with no air despite the oxygen on my nose. NO AIR. Panic, blur images, sounds, voices of people around and me trying to breathe with a fantastic pain in my chest.
It was painful but strangely calm inside me.
I remembered my thoughts at this time, “I’m stupid like a stupid fish ~ pain ~ why it’s so painful my gosh ~ why I still fight??? Let it go! It looks like so restful, peace, quiet and soft ~ life is pain, knocking on heaven’s door is so tempting…”
The team around me was waiting for me to come back. I remembered while I took the hand of my doctor in one of my hands, I was thinking that the last hand I could hang on to would be my doctor’s.
Donno why. Sounds stupid. Anyway. As I could start breathing a bit better, they transferred me to Intensive Care to check what had happened.
Pulmorary Embolism, internal bleeding.
Each time I travelled for HK, between 11 to 15 hours of travel door to door, my body built platelets (blood clots). I even remembered this time that I had to go to London for a workshop of…2 days…22 hours.
_Pulmonary embolism (PE) is a blockage of the main artery of the lung or one of its branches by a substance that has travelled from elsewhere in the body through the bloodstream (embolism). Usually this is due to embolism of a thrombus (blood clot) from the deep veins in the legs, a process termed venous thromboembolism. A small proportion is due to the embolization of air, fat or amniotic fluid. The obstruction of the blood flow through the lungs and the resultant pressure on the right ventricle of the heart leads to the symptoms and signs of PE. The risk of PE is increased in various situations, such as cancer and prolonged bed rest. Symptoms of pulmonary embolism include difficulty breathing, chest pain on inspiration, and palpitations. Clinical signs include low blood oxygen saturation and cyanosis, rapid breathing, and a rapid heart rate. Severe cases of PE can lead to collapse, abnormally low blood pressure, and sudden death. Diagnosis is based on these clinical findings in combination with laboratory tests (such as the D-dimer test) and imaging studies, usually CT pulmonary angiography. Treatment is typically with anticoagulant medication, including heparin and warfarin. Severe cases may require thrombolysis with drugs such as tissue plasminogen activator (tPA) or may require surgical intervention via pulmonary thrombectomy.[from Wikipedia]_
This platelets were there. Tiny. Hidden. And ready to act anytime. Of course there were not only little pieces… Some were big and then one day, they decided to travel too… Through your heart.
And to make him stop. Funny heh? Click. Stop. No air. Bye.
I was finally kind of lucky to already BE in the hospital… My doctor told me that one of their colleagues didn’t have this chance… Just after a long distance travel he went to the beach, and died. Click. No air.
This is why one of my favourite « quote » or rule of life is « Carpe Diem« …….
> Music helped my loneliness <
- Angus & Julia Stone: Big Jet Plane
- Téléphone: Les Dunes
- Gaëtan Roussel: Dis moi encore que tu m’aimes
- Alain Bashung: Happe
- Gaëtan Roussel: Help myself
- Guns N’ Roses: Live and let die, November Rain, Knockin on heaven’s door
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