Drama-Lama…. or just the pure hard reality.

I often don’t post the full drama behind an attack, there is a reason for this.  It is scary… it is very hard to go through & most of all, I don’t like others to worry.  With the fact that my Brittle Asthma seems to be trying it’s hardest to kill me, maybe it’s time to let people know, to say thank you to my family & friends, to acknowledge that it takes teams of people to bring me out of an attack… that it has been a rough few weeks here and I am  still very much at critical points in my recovery.

On Monday 3rd April 2017, I was working from home with a little but of a tight chest, still recovering from the last hospital admission. Suddenly my airways began to close and a full on major attack began. Dan had to call the ambulance & sit there watching, helpless as I start the fight to keep breathing.

As I live in London, normally first on the scene is a rapid-response, sometimes these are advanced paramedics. They are normally here in minutes before Dan has even hung up the phone. They quickly work as my oxygen levels are dropping, they rush to get an IV line into my arm, shoot adrenaline into my body along with hydrocortisone, pump me full of oxygen & nebulisers.

They will keep me going until the ambulance gets there, at which point I will be loaded up, hooked up & rushed to hospital on blues.

RESUS - HospitalWithin minutes I will be in RESUS, Heart Monitors will be on, another IV line will be put in, more nebulisers & oxygen, bloods taken. By the time Dan gets the few miles to the hospital… there will be around 10 people in my bay, working with me to get things going.

Imagine getting into a bay to see someone in a gown, soaking wet from sweating so hard, fighting to breath with 10 or so people around her, oxygen tubes in her nose, nebuliser masks shooting drugs into her lungs, leads every which way, beeping of machines, alarms, IV lines of Magnesium, fluids & potassium going in on multiple lines.

The first attack on Monday lasted around 4 hours & took a lot to fight, once it was finally under control I was taken up for a night on CCU.  Now with Brittle Asthma, we have different markers, my attacks are hard, severe & long.  They exhaust me, every muscle hurts. The drugs I need to save my life cause my heart to enlarge & beat at a rate that it so fast it causes a danger of cardiac arrest.  After a night with the AMAZING team & being stable, it was decided with my consulting team, I would be allowed home to continue my medications/treatment.  It is never a good idea to remain once stable in hospital mainly because the risk of an infection from someone can, as I have no immune system be life threatening to me. Everything I did in the hospital, I can do at home. We monitor oxygen, carry out nebulisers the difference is my bedroom is clean air & I can sleep. I can either have one attack or clusters of them, but I cannot sit in hospital waiting for them.

Dan & I took it slowly down to the car, stopping for coffee & a bite to eat.  My lungs a little tight, but all ok & to be expected. After lunch we walked to the car, a mere 100 meters… it was a little humid out, but by the time I got to the car I couldn’t breath.  I got out my nebuliser as (luckily I have a portable one) & got in a quick Atrovent hoping it would help & everything would calm down.

NO SUCH LUCK!!! being a few meters walk to the A&E department Dan reluctantly let me walk there, within seconds I was back in RESUS, this time a lot worse off. My body was a Art Linelot weaker, I could not fight this one easily.  As usual the IV lines went in, my oxygen was down low, my Co2 levels dangerously high & my heart rate so high it would cramp & restart itself.

ITU soon appeared & tried their hardest to get an Arterial Line in, but my arteries where so bad after 3 attempts they had to stop as my breathing had got so much worse.  Dan had to sit there and prepare to sign paperwork to allow them to ventilate me as we tried a last attempt at nebulisers knowing my heart was already too enlarged.  As the ketamine was prepared & a new tray of items bought in, we managed to just pull it round enough to allow me to keep fighting even though exhausted. 6 hours since the beginning of the attack, some 30 medical staff later…. I was finally stable to be taken to Critical Care to be looked after.

CCU2

For a week I was on Critical Care, fighting to get my Co2 levels back down to acceptable, whilst having levels of the life saving drug Aminophylline adapted until the max was in Wiresmy blood stream, as they dose me up on Antibiotics to give me a false immune system, increase the steroids in my system to allow my airways & lungs to repair.  I spent the days hooked up to so many wires it is unreal, not being able to shower without help, if I was fit enough to shower at all.  To have people help me eat, go to the toilet, not being able to walk more than 10 meters without loosing my breath. slowly lowering the oxygen until I could breathe without it & maintain levels.

Having mini-attacks & keeping them under control as soon as possible,  as you have been told if you have one more major attack you will be ventilated because you will not make it through.  The reality of having the equipment needed in the corner of the room  to ventilate you in minutes because your levels are volatile.

The reality of being so scared but having to stay strong because you don’t want to worry anyone, when in fact you cry everyday because of the pain, the muscle fatigue, the fear… the heart spasms which rip through your body & cause so much pain you sieze up. The fact that every time you breathe your lungs scream in pain as the muscles are so tired.

When everyone has to help a 38-year-old to the bathroom, help me shower, sit with me when I eat or watch me constantly as I sleep as my oxygen keeps going dangerously low even on oxygen. Where to get any water you have to drink through a straw & oxygen mask as you can’t remove it even for a second.

When reality is pretty scary, you don’t want to let people see it in the moment, in 48 hours my boyfriend had to watch me fight for my life twice, we had to live waiting for me to stabilize enough to come home, knowing that at any point … this can happen again.

Reality is that you feel like you have let people down, plans change, work has to pick up things I was doing, people need to do things for me.  You worry you will loose your job as you have been so sick, that friends will not understand as you have to cancel long set plans, that you have to learn to let people be strong for you, when you have been trying to be strong for them.

Reality is… I cheated death twice in 48 hours because of everyone around me. It could have easily been another story, I don’t often speak about the reality of an attack or how it affects people.

Reality is… I am scared, I stay strong for my friends, family & Dan.  I am 100% terrified of the next attack, I am scared you will all be afraid or sad… I can only promise that I will always fight to keep breathing, no matter how tired I get & how much I feel I can’t …. I will always find a little bit more to give.

Reality is… its 12:38, I have been awake 4 hours, done my medication, 2 nebs, sat in my clean air bubble all day,  my friends are working, my family busy. I can barely walk to the bathroom today with low oxygen.   As hard as it is to do nothing (yep this is hard for me), I know to stand a chance of stopping this flare up.

Reality is…. 10 days ago, I was happy to be back & working. I was finally getting back to me. 10 days ago, I thought we had beaten this again & we where back to normal… I guess the Drama-Lama had different ideas.

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