Living life breathlessly

Well there hasnt been much going on today, but what has occurred has been pretty monotonous.
I woke up late but mum had done breakfast so I went straight down to eat and dad was waiting to go out so I went and got ready quick. I was already a little rattly but decided to go with just one nebuliser as they take about 15 mins each to run.

Well that was a mistake. While out I had to walk up this street, it slopped a little upwards and by the time i got to the top, not only was I ready to pass out, but you could hear my throat ratteling a mile off. Coughed my guts up on the way home and went straight in to run a neb.

Which was fine then till about 2 hours later at tea time, when I started really ratteling. Taking a breath in was hard, but tea had just been put out so I endured it. Took me forever to eat it and it was cold by the time I got my breath back enough from walking from the kitchen to actually try to eat it.

Anyway, in the course of today, I have so far had to run 6 nebuliser treatments of hypertonic saline. This is like a salt solution that coats your mucus and supposedly makes it easier to cough up. It tastes foul (think drinking sea water) and burns your throat when you cough. So overall not very pleasant and not something you want to have to be doing all the time during the day.

You see I have this disorder known as Tracheal Stenosis. Which is basically a narrowing of the airways causing me to have noisey and difficult breathing. I get out of breath a lot easier than a person without it would. When I was 16 I was ventilated for about 3 months and had to have two tracheotomies. This is what caused the narrowing.

A few weeks ago, my ENT surgeon and my Thoracic surgeon decided to take me to theater to monitor my stenosis. They discovered that it had in fact worsened, so while there, they tried to widen the area, I think they used laser but im not sure (I now know that laser is horrible for stenosis but there you go). Anyway, they removed that much that my airway collapsed, so they had to put a stent in (like a piece of tubing to keep it open.) Though they were not happy with the stent as it was the wrong size, but they wnted my throat to have time to heal before taking me back to theater. I spent the night in ICU and the following week in hospital.

I was discharged for 3 weeks, where my breathing was worse than when i went in and I was put on a pretty high dose of steroids to control the inflammation. Both surgeons where present when I went back for the stent to be changed, I was then transferred to HDU for the night and on to a normal ward the next day. Im immunosuppressed (due to a transplant) so I had to have a side room, which was better anyway as I prefer my own space.

I was only meant to be in for a couple of days, but my breathing was not improving and I was producing a lot of gunk on my throat and so every time i took a breath a horrible rattling sound could be heard. One morning at about 5:30am, I called for the nurse as I was having a really struggle getting my breath. She said I was due my IV steroids so would try that and see if it helped.

Now the problem was, the nurse wasnt a very good nurse, spoke very little english and was generally bad (over the course of my stay she gave me the wrong meds twice and mixed my nebs that have to be done separate as well as other numerous little things) Anyway, with IVs your supposed to flush the IV first to make sure that it is still working, then put them medication through and then flush it again. (I did a couple of years training to be a nurse) But this nurse just put the medication through, then flushed it. The medication itself stings to go in, but im sure that the IV wasnt in right, it didnt look like it was. When I said to her i dont think thats in she just said, well it went through without hassle and then she walked away.

So I gave the IV an hour to work and was still struggling to breathe and it was getting worse not better, so I rang for the nurse again. This time she hooked me up to a sats monitor (A light that goes on your finger to tell you how much oxygen is in your blood as well as your pulse rate.) My pulse was a little high at 130 but my sats where still showing up as 100% (the best you can get). She then left the room and didnt come back to check on me at all for the rest of her shift. (I have a massive fear of being a hassle to anyone and so I dont tell people im struggling unless I really am struggling. And the way this nurse acted, made me feel like I was a a hassle which was making me feel worse.)

Anyway, once the day staff came on, I was starting to get pretty tired and my pulse had gone upto 140. I eventually bit the bullet and rang for the nurse again. She said that I would be reviewed on ward rounds (in about an hour) and then it would be upto the surgeon on what he wanted to do. She could see I was struggling, and could probably hear it a mile off so she decided to run some saline (water) nebs through hoping it would help ease my breathing.

I managed to hold on till about 9 O'clock. They bought me breakfast earlier and although I was starving, I only managed two mouthfuls before I thought I was going to pass out. I was so tired and I knew things were not looking very good as I was using my accessory muscles (stomach muscles) to breathe which isnt a good sign. It was ike breathing through a straw. Just couldnt get enough in and unless I sucked really hard I could only get air into the tops of my lungs. Feeling so exhausted I leaned back n my pillows, my pulse was reading 180 at this point.

Thats the last thing I remember. From what I can gather at that point I must have passed out. I went into respiratory arrest (stopped breathing.) Luckily the surgeon was just on his way into my room and he was able to set off the arrest alarms. The team managed to revive me, but I have very poor veins and as said earlier my current IV had blocked. So they where trying to put another one in. From what the nurses said, once they revived me, I went pretty wild, mix of being scared and lack of oxygen. So I was thrashing around a lot and needed to be restrained. They eventually got a needle in and were able to sedate me and control the situation better. I was taken to the operating room, where they found that my secretions had completely blocked the stent making it impossible to breathe.

I woke up two days later in ICU hooked up to a ventilator with tubes an wires everywhere. My first memory was my surgeon standing at the end of my bed telling me I had given him a scare. Mum and Dad came to see me later that day, where I spent the whole time complaining, well as much as you can complain when you have at tube down your throat, about having a catheter (tube in your bladder) in and having a central line (big needle sewn into your neck) and a femoral line (even bigger needle that goes into an artery instead of a vein in your groin.)

Now this really got to me. I have a lot of trouble with people seeing my body at the best of times, but I am also a self harmer. I have many many scars on my thighs, that no one has ever seen. Then to know people who I dont know have seen that area, really worked me up.

My oxygen levels in my blood had apparently gone all out of whack. Once they started to normalize, I was taken off the ventilator. Again this was rather messy. My sedation seemed to have worn off and I felt like i was chocking on the tube. Everyone was busy, someone else was getting there tube out. Eventually as the alarms kept going off, a nurse came over and decided to suction me (sticking a vacuum down the tube to clear out secretions) to see if that was the problem, even though you could see I was obviously chocking.

Eventually they came to take the tube out. But it got stuck halfway through coming out. The guy doing it just stood there holding it, unsure of what to do. He was going to put it back down. Now having a tube half way down your neck sucks even more than it being all the way as you cant breath past it properly. Luckily, there was an anesthetist there who came and took over. He said, give her more sedation, but I dont think anyone did. Then he just grabbed the tube and gave it a very hard tug. Boy did it hurt.I thought my throat was being ripped clear of my body. And suddenly I could breathe again.

The next day I was transfered back to the normal ward, where all the nurses kept coming and telling me how much i scared them. Dont think they have had any arrests on that ward before.

So after spending 3 weeks in hospital, I was finally discharged. My body is still making far to many secretions, so im still on the steroids (though hoping to get them lowered tomorrow) and nebulisers as frequently as I need them, which at the moment is about 7 times a day. Which is a pain as my machine isnt portable so going to uni, i just have to kinda spend ages getting as clear as I can in the morning and carry on till im gasping when i get home.

My breathing is still worse than before I had surgery. Especially when im rattely, I can find it draining and nearly pass out by just going to the loo. The surgeon says that there is nothing else they can do except to give me a permeant tracheostomy, which I do not want at all!!

I have been doing some research online that is looking hopeful, but I will save that for another day.

So tomorrow at 11, I see my surgeon for the first time since discharge. I dont know what to tell him when he asks how I am. The first part of the week was ok and I managed well enough, but the weekend has been horrendous. I doubt there is anything he can do. And i dont want to discuss my research with him till I have a little more info.

I am however going to ask him what level of damage there is. Others seem to know how narrow there airway is, but I dont. I dont know what else I need to ask him. Im sure I should have questions, yet my mind draws blanks.

Its just so draining being breathless all the time and I feel like I am hooked up to this neb machine all the time. This is no way to live, not for a 23 year old. I shouldnt be so tired. But of course the depression is also playing a part in this and getting me down. I have very little motivation and given the chance would just sleep all day.

But I know other people have it a lot worse than me, so really I shouldnt complain. It just feels like a life sentence, to know that there is nothing else that can be done and knowing it will get probably get worse not better. *sigh* But least I can carry on and such right?

Didnt mean for this to be so long, but thats basically my life for the last few weeks and where I am at now.