Born with emphysema past and present

Born with an emphysema, at the age of 8 got more than half of my left lung removed and now, for the rest of my life, I live with it. I'm 24 and a survival - sharing, seeking and understanding Life Itself.

[emphysemapastandpresent]

(via https://www.youtube.com/watch?v=7oQUMw_x7uQ)

[emphysemapastandpresent]

[emphysemapastandpresent]

Aspirin a Day Keeps Emphysema Away, what can I say...?

DENVER — Regular aspirin use is associated with a slowing of the progression of subclinical emphysema, according to an observational study that tracked the condition using CT.

If these results are confirmed in a prospective study, aspirin would be the only known treatment to counter emphysema.

"There are a number of animal studies showing that endothelial damage contributes to the development of emphysema, and there are lung biopsies in humans showing areas of emphysema where the capillaries are destroyed," said Carrie Aaron, MD, from Columbia University Medical Center in New York City.

However, it is unclear whether this is related to "the destruction of the entire alveolar space that includes the capillaries, or whether those problems in the capillaries came first," she told Medscape Medical News here at the American Thoracic Society 2015 International Conference.

The researchers reasoned that aspirin might counter emphysema by inhibiting platelet activation, reducing inflammation, or altering blood flow in pulmonary capillaries.

Their work grew out of the ongoing Multi-Ethnic Study of Atherosclerosis (MESA) study, which involves more than 6000 patients and was designed to reveal the characteristics of subclinical cardiovascular disease and the risk factors associated with disease progression.

MESA-Lung Study

For the MESA-Lung study, Dr Aaron and her team evaluated 4469 men and women 45 to 84 years of age with no cardiovascular disease. Most, 55%, were current or former smokers. All the patients had undergone baseline coronary calcium CT scans, which the researchers used to determine the percentage of lung volume with emphysematous features.

During the 10-year follow-up period, participants underwent up to four CT scans, which were used to track increases in percent emphysema. Eighty-one percent of the subjects also underwent spirometry to measure expiratory airflow.

At each CT scan visit, any medication taken in the previous 2 weeks was assessed, and 921 (21%) of the participants reported using aspirin at least 3 times per week.

The reduction in the progression of percent emphysema, assessed with CT, was 0.36% lower in regular aspirin users than in nonusers over the 10-year follow-up (95% confidence interval [CI], –0.63 to –0.09; P = .008).

In a subanalysis of ever smokers, the reduction in progression was 0.37% lower in regular aspirin users (95% CI, –0.76 to 0.03; P = .07).

The results held when the researchers controlled for age, sex, race and ethnicity, cigarettes smoked per day, pack-years of smoking, and hypertension.

In participants who had a baseline FEV₁/FVC ratio — vital capacity expired in the first second of maximal expiration — below 0.7, progression was 0.93% lower in regular aspirin users than in nonusers (95% CI, –1.73 to –0.13; P = .02).

"It's really hard to say" if there's a causal effect, said Dr Aaron, pointing out that adjustment for confounders is difficult in an observational study. "I feel really confident in the results," she explained, "but what we're showing is an association."

Correlation, Not Causation

"It's early days yet, but I think there is some very promising information," said Wan-Cheng Tan, MD, from the University of British Columbia in Vancouver, Canada, who attended the presentation.

It is good to see that "something that is so widely used might help alleviate the cardiovascular side of things and the pulmonary side of things," she told Medscape Medical News.

The results are intriguing but difficult to interpret, said session moderator David Mannino, MD, from the University of Kentucky in Lexington. It could be that regular aspirin users are making conscious health choices.

"A person who takes an aspirin a day is probably doing it for health reasons," he explained. "They may also be living a healthier lifestyle. It's not a simple question of whether they're taking an aspirin a day, but whether it's a surrogate measure for other things."

Previous trials have measured aspirin use. "One might be able to interrogate some of those data and look for a signal," Dr Mannino said.

Dr Aaron, Dr Tan, and Dr Mannino have disclosed no relevant financial relationships.

American Thoracic Society (ATS) 2015 International Conference: Abstract A6354. Presented May 17, 2015.

More: http://www.medscape.com/viewarticle/845454

[emphysemapastandpresent]

What is the pathophysiology of emphysema?

[emphysemapastandpresent]

What is emphysema?

[somewhere-outthere]

Don’t you ever leave me alone at the doctor’s office Loool #fun #doctor #office #lol #selfie #instruments #ihavrnoideawhatimdoing #dogmode #eye #funny

[emphysemapastandpresent]

Some times you need to take it in the funny kind of way...

[emphysemapastandpresent]

Loneliness

When you have an illness, whatever illness it is.

You feel lonely.

That’s right. Lonely. Like nobody understands you and trust me, it is true. Not even your doctor can understand you.

But I can tell you one thing. My best friend is myself and whenever I feel the evasion of loneliness, I sit on the floor, get my head between my knees, arms around my legs and talk to my self.

Image from: https://www.flickr.com/

My inner me.

There’s nothing better than talking to yourself. Do you know why? When you stop talking to yourself, you also stop believe in your feelings, emotions and actions.

We cannot let that happen, because... the consequences can be: permanently damage.

In life, we can make choices based or (what we think) is ourselves, than you have the choices imposed by others without you noticing, than the ones you notice, and finally and most important: the ones you don’t have a choice.

Meaning, I need to change illness to something else... Maybe “yellow ground”, when you are at the yellow ground, you take everything away from you.

However, even when they explain it scientifically everything, you still don’t understand “why me?”. And believing in God, “Oh God, why me?”. Well... Something happens for a reason, others... not that much.

Loneliness gets to you when you are at the yellow ground and it’s hard to stand or at least, pretend that you stand when you need to.

Loneliss can be an answer for many sort of things, from physical to psychological. Well, in physical yellow grounds, psychological/emotions are always present, and I belive, vice-verse.

Nevertheless, My yellow ground focus is indeed physical pain and understand how it affect us mentally, spiritually and most of all, ourselves as human beings.

I wanted to leave this here to tell you. You are never alone, and at this time we live in, internet helps hundred of thousands of people not feeling alone. But in the real true meaning of yellow ground, you can put a curtain in front of your eyes if it helps but the loneliness will always be with you.

Let me just tell you one thing. “normal life”, “ordinary life” is boring. Make your own life, with your feelings, explore them, talk to your self and write it down. Paper of virtual paper (whatever) listens to you, because you are writing to yourself. When you make it public, you not only seek for help and understand from others but in the true meaning, you need to feel you are part of something.

You are.

You are part of this world, from heaven to hell you pass, you live only one life. Don’t live it for the others or like the other, get free, make yourself free of whatever isn’t necessary.

Trust me, loneliness can be dark. Can make you things that only leave you forever in darkness, don’t avoid loneliss, explore it. Make it something worth of living and someday (as I, myself are waiting) loneliness and darkness turns into happy and meaningful life.

Knowing something inside you is wrong can be devastating, I know.

Knowing that you life can change from day to night can be hell on earth, I know.

I cannot talk about “staying strong”, I would be an hypocrite but giving a meaning to everyday life can be life changing.

By the way, I highly recommend the book The Yellow World by Albert Espinosa.

X

From you beloved yellow one.

[somewhere-outthere]

Second time this year vampires #blood suckers done . 💉 #health #lung #emphysema #therapy #sunglasses #arm

[somewhere-outthere]

#fuckyou #emphysema #night #life #quote . I’m gonna kick your ass and you won’t even notice bi**h ! 💪 #sleep and #die

[emphysemapastandpresent]

Awake - 'Hello World'

So, I woke up. 

Lot of tubes on my left back, between my ribs. Terrible tube in my nose that I tried by myself to took it out, then someone (I don’t remember who) that was with me called a nurse or something like that, and they pulled it out. It was terrible sensation of extracting you something. Indeed I felt lighter apart the two tubes I had on my ribs, but tones of pain on my left shoulder that was extremely high comparing to my right one...

Something was missing. Didn't know what or why. 

My father wet me lips and said everything is going to be all right. I believed. I’ve always believed in him.

  So, I was in some floor, probably in the intensive care and the first meal I had (I don’t remember how many days passed between waking up and this day), and it was delicious. My father gave it to me. It was the best meal of my life.

  About some other particularities, I had a dipper to pee and poo... So, I couldn’t walk or seat more than a specific angle due to the tubes plug into my lung.

  Than, not many days passed, I got moved to the Pediatric department. In there I made new friends. I was always happy in that time, my grandparents went there to see me and brought me puzzles and games and my grandfather played a lot with me.

  I love my grandfather and miss him a lot, since he passed away in 2008. He wasn’t present at my 18th birthday but I’m sure he would be so proud of what I became... (One day I tell you more about that).

  So, moving on with the subject... In this room, there was a black boy that told tones of jokes during the day and slept with eyes open at night. Which cared me as hell but... well, I survive... ahahah What can I say...?  He was in front of my bed, on his right, someone I don’t remember at all, but I do remember that wasn’t there for much time has we were.

On my left side, an older boy, very clever, I don’t remember names at all... It’s a shame but... it was in 1998 and I only had the courage to talk about this now. He was super intelligent and did this amazing drawing from imagination, they were scary drawing with a lot of blood but I loved it. He offered me one. If I found out, I’ll upload it here.

  From this last boy, this super smart, I think he was 15 or 16 at the time, he had to put serum awake and the only thing I remember was they shutting the curtains around him and listening to him screaming. Neither of the others in the room told a word during that time... To me, it felt an eternity... His screams of pain... He was our brother... suffering. We were apathetic.

  Then I was transferred to a room, I thing I was alone, and it was summer time. In my country, in those years, summer meant bullfighting and I loved it. Don’t know why... Well I should tell that I don’t know if I was in this room before or after the "brotherhood room". But what I want to tell from this part is, there was this stupid nurse who didn’t wanted to clean my ass... Yes!!! Clean my ass... Stupid nurse. That’s all I remember from the nurses in that time. I think my parents never found out how she treated me... Stupid nurse.

  Back to the brotherhood... this is getting long... next time... learning how to walk and removing the stupid tubes... =) Stay health, stay strong! 

   To be continued...

Cheers, from your surviver. 

[emphysemapastandpresent]

Rise and survive

At the age of 8, I came home from a study trip and my parents noticed that I was not only pale but very, very… very tired.

So, they decided to take me to the central hospital. At that time, my father was  a neurosurgeon (he retired recently) and talked with his colleagues from the pediatrics department. Instantly they made me an x-ray.

I waited in a room with a large window and could see they walking from one side to the other… with my x-ray on their hands.

I could feel “something is wrong”.

Now I know, I had a total left lung collapse.

                     [here's an illustration]

Then, some hours passed and I was with my serum on my hand. I have a blackout from this time till night. Maybe it wasn’t night but it felt like night. The room was small and I had nobody there, only my father and a black (or lightless window behind him).

Doctors and nurses got in and they put me a green curtain between my face and my left side of the thorax (I couldn't see a thing). My father was on my right side, he could see what was happening. The things a remember the most from this moment was crying and begging father to stop, like it was his fault or it was in his hands… Of course it wasn’t but at the time I didn’t had any God to call, only my father. I begged and squeezed my father's hand as much as I could.

 After 16 years, I still remember crystal clear this moment and the pain itself.

After that, I could see, they inserted a tube to drain “something” from my lung. I couldn’t move much not to interfere with the tube… At night, probably the first (I don’t remember how many nights I was there), a newborn baby was moved to my room, I was at the intensive care and only understood that when the baby was there.

He didn’t move or cried. I was very worried and vigilant because his or her parents could be there… Imagine your first days without your mother.

When I woke up from the first night, some nurse was yelling because I moved too much while asleep. How could I control my sleep? I was 8 (not even today I could...). The tube got a little out and the doctor told not to worry. Only more tap was applied... always tap more... lol, looks like a joke but it felt like one.

New blackout in my memory. I definitely don't remember having the doctors removing this tube, only having two scares: one from the tube and the other from the anesthesia (forever).  

I got home and my grandparents were there. They lived 50 km away and never had slept in our home. This was the time. I was happy and playful. Like nothing was happening.

At night, my father told me “put this in your hand during the night and you won’t feel they put you again the serum”. I woke up, got a bag with clothes and my father drove me to the hospital once again. I remember looking at my hand and see my skin wizened and soft from the “thing” he attached in my left hand.

I was put in a bed and they gave me some kind of liquid and pills. After that, I was in the bed, looking to some cartoons on the wall of a corridor and fell asleep.

Next images I had... were probably imagination, I don’t know… Because I remember one nurse, or what ever it was, telling me “stand still, I can’t put you the serum”, but I was sure that was already asleep… So… I don’t know.

Some hours got me, more than 6 hours passed in surgery. A huge part of my left lung was removed - from a little girl body, tiny little girl body with curly hair and hazel eyes. That was me, waiting to wake up.

  …To be continued.

  [My parents probably explained me what I had but despite the effort to understand, even now it’s difficult not only to realize but also accept.]

[emphysemapastandpresent]

The reason

The reason that made me begin this blog is very simple: got very sick recently and I made a choice - to share my experience with others that are going through any stage of emphysema...

So, let's start.

[emphysemapastandpresent]

True wisdom comes to each of us when we realize how little we understand about life, ourselves, and the world around us.

Socrates