The Royal

SoI vanished for over a week, and what a week it has been.
Last time I posted, I had started some anti biotics as I was feeling unwell. I went to bed and slept well, though did wake up early to mum shouting at me to do my nebs as I was coughing a lot. I felt even worse when I woke up so I checked my temp, and sure enough it was high again at 39.2. I was starting to worry, as the temperature was so high and I felt so rough with it. Of course, me being stuborn, was doing the whole, I have meds, I am fine and not getting any further help. So I tried to sleep it off.

By 5pm, I literally felt like I was dying. Everything ached so much, I was shivering despite having many layers on and although I felt the need to cough, I wasnt, partly due to hurting so much, but more so because my chest was backing up. I checked my temperature again, and it seemed to be going up and was at 39.8, despite having taken painkillers an hour before.

I knew at that point that I needed more meds and I really didnt want to go through the night incase my temp rose anymore. From training I remember that 37.5 is a temp, but once you get to 40, you run the risk of brain damage and seizures. So off I went to the Royal Liverpool Hospital. Now anyone who has known me for a while, knows how much I hate that hospital. To be fair, its about 3 years since I was last in there. But generally its unclean and the staff dont know what they are doing. I had no choice at this point and so off I trundled to A&E.

As soon as I stepped foot in A&E, I was moved straight to resus as my breathing was very noisy. After sometime, I saw the doctor who ran a load of tests. I had a fast pulse and high blood pressure, but my oxygen sats were remaining stable at 96%. Although they were not low, the doctor decided he wanted to check my arterial gases anyway. Ouch!! My artieries are well battered and deep, it took him a couple of tries and he hit a nerve a few time, but eventually got it. Well, all my gases were out of the normal range, meaning I was storing Carbon Dioxide. This along with the temperature was why I was in so much pain. I was started on a couple of differnt IV anti biotics a load of new nebs and some painkillers. I was moved to an assessment ward.

They expected the meds to kick in pretty fast but 24 hours later, my temperature was still jumping every 2 hours. There was also difficulty keeping an IV in as my veins were shutting down within an hour of stopping the IV. I was changed to oral anti biotics and given tons of chest physio and nebulizers every hour.

I dont deal well with small amounts of sleep so being woken constantly as well as feeling crap, began to wind me up. The nurses were busy and so when I started to feel rough, I was unable to do much. I told them my temp was going up and that I needed painkillers and a drink, all of which I kept getting told, in a minute. I curled up in agony but then began to panic. My throat was dry and felt like it was closing not to mention my muscles were begining to ache more.

In the end, I burst out crying at one of the nurses. She was a little shocked, but then told me that I didnt need oxygen as my levels were fine according to the machine. At this point, I wanted to scream that my levels where fine last time and in A&E, but that wasnt why I was on oxygen. In the end, I demanded to speak to a doctor, as I was getting scared my airway was about to shut down again.

The doctor didnt really listen and in the end turned around to me and said, well there is no mircle cure to fix your throat, you should just learn to get on with it. At this point, I truly wanted to scream. I was not looking for a miracle cure, I was looking for the correct meds, and for someone to keep an eye out and keep me breathing should my throat go on me.

Anyway, long story short, they wanted rid of me and so moved me to a respiratory high dependancy ward. This was much better, it was clean, the staff knew what they were doing and I was able to get some sleep.

It took about 5 days, for my temperature to settle down, but then my cells in my body began to play up. The CRP which shows if you have an infection, should be about 5 or below, mine was reading at just over 80. Then, my immune system took a hit too. As I began to get better, my infection fighting cells, dropped right down to almost zero. I was immediately put in isolation and everyone who came in had to be gowned and such.

I was not allowed to leave my room, until the cell count came back up to closer than normal. I had bloods drawn daily and a load of tests done to ensure that there is no underlying reason why my count dropped so low.

I still feel pretty crappy and keep getting stabbing pains in the bottom of my lung that has had surgery. But now, I just need to work on getting better again. Its amazing how much fitness I have lost on this admission. Usually, I work hard to keep moving, but feeling so rotten and being in isolation, meant that I didnt really. Simple things, like tying my hair up today, left my arms aching like mad. So thats my next thing to work on.

Not to mention that I now need to rearrange my admission to London as I missed it this week.

So that was my exciting week, spent in the hospital, again, bored out of my mind. I also missed my mums 60th brthday. I was discharged yesterday, and now I am going to enjoy curling up in my own bed and sleeping right through. No sill early morning breakfast wake up calls.

Baby food

I have been staring at the screen for 10 minutes wondering how to word this entry or how to start it. I have no idea what my head is telling me today.

There has been good aspects to the last few days that I have enjoyed, there have been frustrating ones when I wish I had my voice to speak up or I had the courage to stand up to people and voice my opinions. Mixed in with all this there is an underlying fear and heck of a lot of denial. My brain feels like baby food, all differnt flavors, colors consistencies all mixed together. All going on together and yet all the tastes are there.

The doctors have written me up for painkillers again. Volterol and Codiene. I asked for painkillers they asked why. I said (yet again) that I am coughing that much that every morning I wake with so much pain in my chest, back and shoulders. They didnt bother examining why suddenly 2 weeks after surgery I am getting such pain or having such a bad cough, they just wrote up the meds.

Yesterday a friend of mine was admitted to hospital. Its been a long time coming, but that dosnt make it any easier. I just really hope that this admission actually helps her and gets her the support she needs to get through this rough patch and out the other side. But of course, I still wish there was more I could do. Find the magic words that make everything better. I hate to see others suffering, especially sweet, lovely nice people like her.

The nurses are being nicer to me now. I think they see me as the easy patient now as there is very little for them to do. A lot of the nurses and some of the doctors even wave on the way past or have short conversations whilst on the go. But I still get pissed off easily. One nurse who was being nice to me yesterday
left me very annoyed at meal times. My friend Cam was visiting as she has been everyday since my mum had to go home. It breaks up the day and allows me to socialize. They were bringing dinners round and in my bay at the time there was only me and one other girl in the bed opposite me (we shall call her moaner.)

My friend got asked to leave the bay whilst meals were being served, which ok, is fair enough if thats who the ward operates (though its the first time she has ever been asked to) but moaner had 2 people with her and neither of them got asked to leave!! To me that just seems unfair.

But anyway, we christened her moaner as that is basically what she is. She had surgery the day before so it wasnt even like it was that day. But al you could hear was moaning and whining and she even called the nurse at one point to pour her a glass of water, which was pathetic as I had heard her opening the drawers in her unit which was further away than the water. She was complaining that she didnt have enough pain relief even though she looked stoned and kept falling asleep mid conversation. She has told the nurses she is in to much pain to eat or do anything, but when no one is around all you can hear is the rustling of sweet and crisp papers. Gah some people annoy me. I do feel for those who have been to surgery with general medical conditions, but hers is technically self inflicted and is cosmetic. Oh well she has been told she is getting discharged on Sunday, but I bet she hangs around till at least Tuesday.

This morning has probably been the most mixed emotions. The last few days, I have found that I have been getting more breathless. In true Kim style, I have been ignoring it. You never know if you ignore it long enough it might go away :) But anyway, I didnt sleep last night as I kept waking up gasping. At one point I sat bolt upright for about 20 minutes as I felt like I literally had to suck the air into my lungs. I contemplated calling a nurse, but in the end settled for putting some saline down my throat having a good cough and going back to sleep.

I had weird reams when I did sleep to. Something about I had been hacking and coding something to do illegal things with it. However, I had managed to unleash a virus type of thing, that spread to humans. :/ Those who had it, basically had to be killed, including my elderly neighbors, which was sad. The government thought they had control of it then and al the hyper died down. But then it suddenly came back and infected nearly everyone. There was one building left where they thought it hadnt infected and they were working on securing it, when suddenly one person started showing symptoms and the whole building had it and yeah. Very odd.

So this morning, I was meeting a friend, so I got up early to run a load of nebs in hope of clearing my chest. A few days ago, I could potter around the bay the bay and such without getting too out of breath. This morning though, I bent to get my stuff out the locker which took about 2 mins and I literally had to sit down for another 5 minutes to catch my breathe and stop going dizzy. Even moving from one side of the bed to the other, I would feel I couldnt breathe. I coudlnt get the air in and out of my lungs quick enough. When I got finished in the bathroom, I noticed that my nails had a blue tinge to them. Again, I chopped it down to being psychosomatic and thought perhaps I am just whining as I have had a bad night and I am getting fed up. But my friend commented this morning that she has noticed that I am getting more breathless the last few days. Frankly this scares the hell out of me.

If my breathing is getting worse while I still have the stent and trach in, what hope do I have next week when it comes out. If I am getting more breathless, it has to be either below the trach or my lungs. Neither of which are a good sign. My lungs are crap, but not that crap and it cant be an infection as my obs are all stable.

I am not sure where this leaves me. I can tell the nurses but the first thing they are going to do is look at my oxygen saturations which are fine. But my sats are always fine. I mean I went into respiratory arrest and still had 100% sats. I hate this feeling of uncertainty and I am holding back the tears. This surgery needs to work! And all the signs are pointing towards it not having worked. I have been positive and I have done everything they have told me. I have followed the routines, I have rested, I have pushed myself and I am trying to remain mobile, but its so frustrating when your body dosnt agree.

That being said, this morning, I felt as normal as I have felt for a very long time. I was meeting a friend for breakfast. Some people flourish with routines, but not me, I feel much better without a routine and with different and spontaneous things. So we decide to go for breakfast in the hospital. I got up and washed and kinda styled my hair as best I can without gel. Then we went for breakfast. It felt good, kinda normal, kinda what you see people doing in films. Getting up and ready of a morning, meeting for breakfast and a gossip, then going seperate ways about your own daily tasks. Yes, mine did start on a downer with my breathing and the rest of my day will be spent sleeping to recover, but for that hour, it felt good, I felt normal.

Its strange how you can feel so crap yet do something to feel good. The crap dosnt vanish of course, but for a moment its not at the forefront of your mind. Its not defing you and who you are and what you are able to do. I dont ever want to be defined by an illness, but it gets so hard not to be sometimes.

Further details

ahhh, So, I finally managed to get the call I have been waiting for and actually have someone there to interpret for me.

My surgeon down in London has been trying to phone to explain the 'procedure' and everything that goes with it. However, fitting it between his surgery and appointment schedule (He works in like 4 different hospitals, inc. Harley Street) around the times when I have someone home to speak on the phone, had been proving difficult. Today however, my dad was in this morning, so though I was grumpy at being woken up early, I was able to get answers to all that I had wanted to know.

I do have it recorded on my laptop for future reference, but I am not going to post it as its obviously other peoples voices and yeh, should anyone in the future want more info, please get in touch.

He basically said, I would need to stay in for 7-8 days minimum. And I was thinking, hmm thats a bit long, surly I can hurry things up a bit. After all there are people who have transplants these days and are out in less than 12 days, so surly a little bit of surgery, whilst I have a trach in to secure my airway, wont be a huge deal. Then he went on to explain a bit more about the procedure, to which I kinda groaned. >.<

Firstly, they cut into my chest and remove some of the rib cartilage. They will also perform some type of scope on my airway to assess and measure it. The cartilage will then be shaped and sized to match my trachea. The trachea rings where there is narrowing, will be split into two pieces, so that there is a gap at the back and at the front. Here the rib cartilage will be fussed and a stent put into my airway to hold it all in place. They will then harvest some skin grafts from my thighs to place over the cartilage and the stent, to encourage the body not to attack it. And thats it for this stage.

Its going to be weird waking up from this one. It is a 4 hour minimum procedure, couple that together with anesthetic and line times and then recovery, I will probably be in theater for about 6 hours. So longest procedure since my transplant. I was only in for 90 mins for my trach and that was considered complex and my hernia's have only been 2 hours max and they did biopsies and such then. I think my other longer one was just on 2 hours also and that was an acute granulated appendicitis and a large ovarian cyst. So I am going to be wiped out for a while. And sore all over. My thigh, my rib and my throat. I really hope I get IV painkillers for a few hours after this.

My worry was that, like with the last stent, my body would attack it and build scar tissue over the work they had done. This is what kept causing me to pass out and get breathless with all my previous surgeries. However, they think that by covering the work with skin grafts, that it should stop that from happening.

I also enquired about the success rate of the operation, well more so mortality rate. They have done about 400 of these procedures and only had 2 deaths, so that is positive.Thats what, like 0.5% risk, again I can live with that.

The main risk of the procedure is that it might not work out. They dont aim for a 100% airway, they aim for about 80% airway. Currently I have about 40% so that would be a big improvement for me, ha its hard to imagine being able to breathe twice easy as now. When I passed out and went into arrest, I had about an 8% airway and last time I was admitted to ICU it was about 15%.

The thing with it, is that the staff at my regular hospital, when I wasnt feeling well used to check my oxygen saturation levels and it was always 100% so they were reluctant to do anything. But my oxygen stays ok generally as when I breath in my airway widens. However, when I breathe out, its more like a vacuum and my airway narrows again. So I can get the oxygen in but I cant get the carbon dioxide out. Hence why I get horrible symptoms like headaches frequently and tiredness.

I also asked if I would need steroids. After the whole cushings thing I was really reluctant to let them use steroids. They said, given my history and such, that they would need to use them during the actual surgery, but afterwards I should be ok with out them, though I will need a course of IV antibiotics.

So overall fairly positive. Yes it is going to be hard work and painful, but I can deal with pain and they will give  me medication to help with it. And if it means I can breath better and even get rid of the trach, then it will all be worth it. And if it dosnt work, it will still be worth it as I know that I have tried. I couldnt live with the regret of not going through with this.

My big stage, I suppose, will be trying to find time to talk to the anesthetist if possible. I think this time I should mention about my PTSD and how pain and anesthetic can often trigger me into flashbacks, like it did when I got my trach. But then what if I tell them this and they treat me differently? I wouldnt want to actually freak out or be in pain or something and have them pretty much ignore it as its jut a flashback. I dont know, I need to think on this one.

oh, and I was out with my mum earlier. She pointed out that I seemed to be gasping more than normal. I did confess to her that I had been feeling a little worse lately and I explained about the headaches and such. She did agree with me and thought I should see someone about it. But as I said, I have too much on this week to be sick so I am refusing to let it get to me. (lol) I am going out with my dad tomorrow, seeing toy story 3 on wednesday in IMAX!!! (EEE excited) and potentially doing something Thursday. I refuse to see any doctor on a friday as everytime I do, I end up being admitted, usually to a hospital I hate. I still have all my back ups, such as my consultants email and the ward number. So if it gets worse, I can get checked. But other than that, i'm in clinic anyway on monday and I have nothing on next week so I can rest more.

Fraud?

I kind of know what I want to say, yet I have no idea how to word it. How to approach it, how to express it, just how to get it out.


Do you think it is possible for someone to understand how long term sickness feels, if they have not experienced it themselves?


I am starting to think perhaps its not. I think a lot of people can say that they understand, but do they ever truly?


Its something that seems to keep happening lately, but then, maybe I am fault. I dont know. Please be honest with me.


Since I first got ill 7 years ago, I have always wanted to be as 'normal' as possible. As soon as I was able to I went back to college, when the deafness was diagnosed I didnt tell anyone, instead I got my hair cut short so that I could wear it down all the time to hide my ears. I avoided physical contact with people so as they did not see my tremors. As my breathing got worse, I tried all the treatments I could, as long as they didnt interrupt my college time. I remember at one point being admitted to hospital for an infection. They tried many times to get a line in and the only place they could was on the back of the knuckle, which tissued after about 8 hours. Ward rounds began at 8am on Monday morning and I begged to be seen first and then to be discharged. I went straight to college that morning in time for my 9am lecture, only stopping home for 5 minutes to dig out a pair of fingerless gloves so that nobody saw my black and blue knuckles. The point is, I always tried my best to keep up with what was considered 'normal.'


I think a lot of people when ill, will often complain a fair bit, which is to be expected. But I think when it is a prolonged illness, you kind of give up moaning. You realize that things could be a lot worse and you find complaining dosnt actually get you anywhere. Of course there is always that constant worry over your head that if you complain whenever you feel ill, people will soon get fed up of you and you become known as the miserable one. You save complaining for the days when things get really really bad, that dosnt mean that the days that you dont complain are easy, it just means your getting on with things.


I think perhaps, people around you become acustomed to this. They begin to think of they are fine, they are not complaining so things must be easy for them. But this often isnt the case.


Sometimes, something completely life altering can happen to you and again you keep complaints to a minimum. People around you still think that you can do everything exactly the same as before the change happened. But again it dosnt work that way.


Sometimes, you cant just cover everything up and pretend things havnt changed. Mentally it might be to hard and physically its likely to be impossible.


Then come comments such as you should be working, why do you get benefits and you will get caught out. Im not a fraud. I really would love to work, probably more than anything else.


The day I turned 12 I got a paper round, I was doing 4+ a day at one point and even more when people were off. A month after I turned 16, I had a part time 24 hours a week job while in school, as soon as study leave kicked in I went to full time and worked tons of over time.


I like working, I like meeting new people. If I could work right now, I would. But lack of voice, lack of hearing, permentant infections and constant hospital appointments and admissions make it pretty impossible. And I feel guilty enough for that. I hate living on benefits, on just enough to keep my car running so that I can actually get out occasionally and so that I can get to appointments.


I hate the looks you get when you park in a disabled bay so that you can get into the shop easier and so that you can get into the car quick should their be a problem. Old people are the worst for scowling at you. Or, the look you get off people when you use a radar key to get into a disabled toilet, even there faces with that look of disgust on when you use a disabled one in stead of a normal one. But sometimes, I need the privacy of a private toilet, whether it be to have a coughing fit or because my stomach is off thanks to the meds. It might even be that I need to wash my tubes and I highly doubt people would want to see me washing sputum off in a sink in a normal toilet. It sickens me enough without others having to witness it. Or perhaps I just need to use the mirror in private to clean up a wound whilst I am out.


Sometimes I want to say to people, think back to a time when you where physically sick and went to a doctor. Remember how rough you were feeling to make you go to them, or to get medication. Now imagine feeling like that everyday for months on end. Now lets see you act normal and get a job and do loads of extra stuff.


I have done the physical illness and I have done the mental illness and I think they can effect you so differently. Mental illness is truly truly horrible, but I would prefer that to physical illness. I would prefer to be in the frame of mind where I dont want to do stuff, rather than being in the position where I want to do stuff but physically cant.


I have been suicidal and wanted to die but I have also been in the position where I have thought I was going to die. They are so far apart on the scale its unreal. With mental problems, as out of control as you feel, you are still in control, at any time you can get scared and say stop, you cant do that with physical stuff. With mental, sure you plan stuff for once you are gone, but in your mind set, it is the right thing to do, you dont feel sad about it, guilty maybe but not sad. With physical your always planning things, you never know when its going to happen and you fear it and often dont feel ready. You cant make that last call before you go, you cant do that one thing you wanted to, you cant say give me a minute to fully think on it. You dont have control over it at all.


hmm what is the point in this. To sum it up,
*Just because I am not complaining dosnt mean I am not suffering.
*Dont be judgmental. That normal looking person getting out of a car in a disabled bay may actually need it.
*Know that things are not always going to be the same, no matter how much anyone wants it.