Part 1

On November 14th 2014, i got admitted onto pearce ward that day. i was struggling a little at home but mainly felt tired and easily breathless .. well, more than what is now my usual.

Sue the physiotherapist consultant decided it would be best to put me straight onto the V60 non-invasive ventilator with 35% oxygen rather than my usual 28% oxygen.

the relief i felt going on it, made me worry. i realized how much i was struggling on oxygen now. i kept trying to tell myself that it was just because of a virus.. i must be growing a virus!

my oxygen levels were still my regular and heart rate was only slightly raised. i didn't feel any cold or flu type symptoms. 

That week i slept a lot, ate very little and slept some more. Due to not eating very much i started feeding none stop 24 hours a day. Blood test results came back and my iron was very low, albumin was very low but my infection levels weren't too high! Virology results came back not too long after and i was right, i was yet again suffering from rhinovirus! 

Never have i ever heard of someone getting rhinovirus as often as i have; it was literally every admission it would be a given that my virology results would come back positive for rhinovirus. 

Rhinovirus is a not so very posh name for the 'common cold' 

It's harmless to someone with an average or good immune system but for someone like me with Cystic Fibrosis is likes to cling to me for dear life and keep returning, it usually clogs my lungs up with a RIDICULOUS amount of sputum and that usually makes it very hard to breathe just at rest. 

However, like i said, i didn't have any cold like symptoms and my sputum load was no different to my usual. It was odd.

I didn't really care very much, i was just so very tired and weak. This we put down to my iron and albumin levels being so low.

Easily treated, lets whack some IV iron and Albumin up and i'll be fixed! 

WRONG.

Things seemed to go from bad to worse as i started swelling due to water retention so i was given IV furosemide, which is the IV equivalent to water tablets. 

Easily treated, lets whack that IV furosemide up and i'll be fixed!

WRONG.

The Furosemide worked.. too well, it dried me up. Both my bowels and sputum became very sluggish! infact, my sputum was like concrete and this brought upon some really horrendous times. 

I was started on some laxatives to prevent a bowel blockage, which was the last thing we needed at this point, but it was definitely on the cards with the way things were heading!

I was now moving no sputum at all and my blood gases and oxygen levels were not very good at all. 

It was now, early December. I was feeling no better and if i was being honest with myself, i was feeling a lot worse. 

They sent me for an x-ray and when i came back, i took myself to the bathroom, which is where things took a dreadful turn. I was in the bathroom and working so much harder on my breathing than usual and it scared me, i found myself gasping for breath taking the 3 steps back to my hospital bed when i suddenly just couldn't get the breath in any longer. 

I was coughing now but still not taking the breath in and the NIV felt like it was making matters worse because i was working against it trying to get back into a rhythm but coughing uncontrollably. My physio had heard me struggling and came running in, realizing i was needing more help, she buzzed for assistance and suddenly my room was full of different people. Nurses, doctors, pyhsio’s. 

I started feeling faint and dizzy now, still struggling for breath and coughing being blocked off by sputum that was too thick to move. It was suffocating. 

My sats had dipped to 52, heart rate was nearing 180 and they put 100% oxygen through my NIV. 

I was getting tired now but i could feel that the sputum was moving so slowly but i was nearly there with it. Just a few more coughs and i could get it up and out!!

Finally, i budged it and was relieved to feel the NIV fill my weary lungs with much needed oxygen. 

I was exhausted and scared. 

What had just happened? Was this going to happen again? 

I was told they call it 'plugging off'. It's exactly how i described and how it felt. A plug of sputum gets stuck in your main airways and prevents air to flow through either in or out. This stops the sputum from moving which in turn prevents you from getting oxygen in and essentially makes it bloody hard to breathe. Harder than i ever knew it could be. 

I was thankful i had the NIV on as that must have been forcing some air in somewhere. I know for certain that without that i wouldn't have been able to get the tiny breaths in by myself and that petrified me. 

I also came to learn that it was going to happen again and again, and again and again for the next two weeks i was caught completely off guard and would have these plugging off episodes with no warning or way to prevent or control them. 

All i could do was push the buzzer and get help and support. 

It was coming to the end of my 4th week, my albumin was low, i was eating nothing but a few nibbles a day, my feed was all the nutrition i was getting, i was sleeping most of the day and now these plugging off episodes were getting worse with each one that came next. I would black out a couple of times, the first time that happened i was lucky that i had someone with me that night. I had woke up in the middle of the night coughing and unable to stop for a breath, the nurses were in straight away to monitor my obs and support me and adjust my NIV settings accordingly. 

But my oxygen levels just went lower as they increased the oxygen they were giving me, i remember looking at my mum who was looking as panic stricken as i felt, i just couldn't breathe anymore and i felt weak and faint and then i don't remember until i came back around being cradled by a nurse called jean!

I had my mum or my dad stay over on alternate nights after that, i didn't want to be alone for very long, and I always wanted someone to be around. 

The episodes themselves were of course scary but that's not why i didn't want to be alone, i didn't want to waste time, i wanted to spend as much time with people as i could because of the way i felt.

I felt the worst i had ever felt and i knew this was not good. I kept thinking that i was dying, that what i was feeling was me dying and the more i kept thinking it and having all these other thoughts, i just had to know, i was driving myself crazy. 

I had so many questions i wanted to ask and wanted to know. 

I tried to tell the people closest to me how i was feeling but it was hard to tell them this, i wanted to protect them and i also didn't want to sound like i was giving up because i wasn't! 

This was why i wanted to tell them, because i wasn't giving up..  i wasn't ready yet so i needed people to know that this was how it was feeling so they could do something or at least tell me i was wrong. I was telling the wrong people though, my parents couldn't give me the answers as much as they would have done everything and anything to be able to. I kept being told to stay positive and not be negative by different people but it just made me more frustrated, i wasn't being negative i was being completely and utterly honest and genuine. 

I requested to speak to one of the doctors. I had to know, i was sick of second-guessing. 

So Proff Webb came to speak with me one lunchtime. 

I couldn't even get the words out of my mouth. 

"I guess, i wanted to ask if... i think i know what i feel but... i'm just wondering.."

i had been asking myself the question over and over for a week and a half now but couldn't get the words out now the time had come to get answers. 

why?

maybe part of me felt stupid for asking incase i was totally wrong but i think maybe i was scared incase i was right in what i was thinking. 

"are you trying to ask if you're dying?" Proff said.

"Yeah and i just want to know will next week be my last christmas without transplant?"

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Labels: Breathe , Double lung transplant , Lung transplant , NIV , Organ Donation , Oxygen , Poorly , Transplant , Virus