Look what I have just stumbled on.

I knew Eva had painted a few other people, but up until today I hadnt seen the results. 

Eva you were one amazing person, look at you still changing the world so much when it has been a while since you were in it. If only you could have carried on, its hard to imagine the places you might have been by now.

The picture is being used as part of the Canadian organ donor campaign Live Life, pass it on.

As for me, well im still in and im still on IVs. Do I feel any differnt? nope.
However, the last doc must have gotten a good vein, as my last cannula, is the first one I have had in the past 3 years that has lasted the maximum allowance of 72 hours. Fab news. However it has meant that it has had to be resited again today. 2 doctors, 7 stabs and I know have a new cannula in my little finger. I doubt this one will make it 72 hours, but maybe I will be out by then.

Though I was asked when i had to leave for London and told they will discharge me at the latest of lunch time Sunday. Fun huh? I intend on being out before then. Just waiting on stupid culture results.

Though I think the meds are finally building up in my system. I feel nauseous today.

But what is worse, is that I have stopped sleeping. Yeah very odd for me. And I cant work out why. I have tried taking my meds earlier. Tried winding down, wearing out and not napping. But alas I am still wide awake at 5. I eventually drift off and get woken for IVs or because I have to go the gym.

i dont know if my mind is going into dread perhaps. The last 4 or so nights, I have had the most awful dreams. Very vivid, very scary and very messed up, involving lots of dead people, killing and running. I wake up several times, even get up and move about hoping not to fall back into it, but I keep doing so anyway. Hurry up and change the damn IVs please.

As for Physio, I was assessed today. I am at pretty much the same point that I was at when I was discharged with my trach. I dont know how I feel about that. I have worked to build up my fitness and I have lost 20kgs, putting me out of the obese catagory and just into overweight. So that should help. But the restriction and hospital time is still taking its toll. But, at least I am not any worse.

So damn frustrating

I am not sure what I want to post tonight, but I feel like posting something.
I am trying to remain positive and for the most part its working, but then things bubble up and get so damn frustrating that it makes me want to cry or scream or something. Of course lack of voice prevents the whole screaming thing and as for crying, well dont go there.

I had my appointment today for ENT clinic today with one of the surgeons who was going to try to give me my voice back. However, he called in sick this morning and so he wasnt there. Therefore the appointment just became a tube change appointment with the nurses. (Whom I can not stand but more of that later)

I had a load of things I wanted to moan about to him and hopefully get some solutions. Things like permanently coughing up crap, waking in the middle of the night and having a 40 min coughing fit trying to get it up, pain, my referral to the other surgeon and of course my voice.

So the nurse at clinic knew about most of these problems because the nurse who has been coming to help with my dressing called her to ask if there was anything they could do as I was starting to look really rough from lack of sleep and aching form coughing. Well one nurse took my tube out while the other one wasnt in the room and the first thing she said was 'god how long have you had that tube in its looking really blocked' When I told her it was just over an hour she was genuinely shocked. So the whole tube thing went fine and then I was talking to the other nurse, whom might I add is a tracheostomy specialist nurse.

She had never heard of the covers that I had ordered for my tube as opposed to what I am supposed to wear. (I will photo one at some point) But anyway, they basically look like a big baby bib made of like foam and cotton. It keeps dust and muck out the tube while warming and humidifying the air that is breathed in. These new ones I found just cover the trach instead of half your chest, so much more aesthetically pleasing. Now these have been out for about 5 or so years and are fairly well used by a few different hospitals whose internet sites I have been scouring and yet this specialist nurse had never eve heard of them. (Im pretty sure when I trained, part of the ruling was you had to keep upto date with all aspects of your chosen field)

So anyway, my mum was telling her about my coughing all the time and her first response, oh well maybe the tube needed changing which we have done now so it should get better. My response, well it hasnt improve with the last couple of changes. To which she then decided that it was a combinations of dust, central heating and not drinking enough. To which my mum told her I drink tons any way after having a liver transplant and having had kidney trouble, I keep my fluids up (believe me dehydration sucks when you have crap veins) and that my room where I spend most the time is throughly cleaned and disinfected at least twice a week. oh and that I also had the same problems in hospital where there is no central heating. Her reply, oh well your body will settle down soon once it gets used to the tube.

At this point it took great restraint not to go an physically bang my head on the wall. I am struggling with this. This is beyond normal! My body does not do normal! Hence why a stent works for everyone else, but I end up in ICU when I have one. Why most people have a voice after a trach and I dont. All I want is some sort of confirmation that something isnt right or some suggestions on what I can do to correct it. I mean I am still exhausted all the time, I still get out of breath carrying my dinner from the kitchen to the living room and have to wait 5 mins while I get my breath back before I can eat. Something isnt right.

I am doing everything I am told. I am doing my physio, I am exercising, I am doing my nebs, I am taking my medication. But things are not getting back to normal.

I mentioned about wanting a tube that sticks out less but that I couldnt find the order code so could she have a look for me. Her reply, well if you get that type of tube you cant wear a speaking valve. oh darn it sherlock how could I have not thought of that! Not the fact that I cant (and she knows it) wear a speaking valve as I have no upper airway which you need to wear on.

And then she mentioned about tube sizes and how they gave me a smaller tube so that it would help my voice. At this point I was feeling pretty tense so I just looked at her and said (well whispered) guess what... it didnt work and I would rather be able to breathe through a decent sized airway than having a smaller one with no change to my voice. She started going on about how you cant tell the difference between tube sizes. I should have asked her how she knew. And how plenty of people have that size and manage just fine. But i have to wonder are they all elderly people who have had cancer (That is what most the info I can find on adult trachs relates to) or are they in their 20s wanting to lead an active lifestyle? And if so what the hell is wrong with me, why cant I move without panting.

I am just so fed up with the whole damn thing. They look at me and speak to me like I should be grateful that I have this tube kinda 'oh look it saved your life you should be glad your still here' and crap. But you know what, i'm not! Im angry and im bitter and im frustrated and tired. Im fed up of fighting just to get through. Cut me some slack, I want to tell them (or even do it myself) to just take the damn tube out because I have had enough with the coughing and the pain and everything else that goes with it.

Its just so bloody frustrating.
oh and joy of joy, the benefits people think I am lying to them and have made an appointment to come out and see me/ question me next week. Just what I need.

Thankful

Well I had my surgery yesterday. What was planned for an hour surgery turned in to a 3.5 hour surgery and so I missed my team meeting. (clever)

Surgery was horrible, well coming round was. Probably the worst come around I have had in a very long time. I woke up feeling so sick, shivering away and in absolute agony. Once I could convey to them what was wrong they did there best to settle me. Gave me anti emetic drugs (anti sickness), morphine for the pain and put a load of blankets on top of me. By the time the ward came to collect me, I was feeling better, but wanted nothing more than to curl up and sleep.

I think I was back on the ward for about 10 mins when my parents showed up as the team meeting had ended. Apparently the district nurses and my parents need to be trained on how to suction and trachy care for use in emergencies or if im not well. They have booked this in for the 29th December. Im also to start going to the gym with physio. They want to put me through my paces and try to figure out if the breathlessness is now caused by my airway (which technically it shouldnt be as I have this trachy) or if its just a really low fitness level that has resulted from me not being able to breathe and therefore not moving around much.

So, discharge date I hear you ask. No real idea. One of the nurses suggested about 2 weeks, but that I am free to come and go as I please pretty much from the ward within reason.

Bear in mind all this was relayed to me while I was still pretty groggy from theatre. Then my thoracic surgeon came to see me. He said he had read the ENT surgeons notes and that there previous assumptions were in fact correct, that my airway had totally collapsed in on its self, hence why I had no voice. During the op the surgeon attempted to widen my airway and when I came around I had a little voice.

However, a few hours later and it had gone completely again. So its christmas eve and I have no voice. I have started walking around with a pen in my pocket and scraps of paper. My parents are so so bad at lip reading that it is unbelievable. There talking about booking into sign language classes just in case. As a way of communicating to me. But I really really dont want to lose my voice, so im putting my foot down for now and refusing to think about it.

The surgeons think that they have another idea to help my voice which they will try to put into place in the new year, but I have yet to discuss that with them. Maybe next week or more than likely the week after, after the holidays.

I was thinking earlier, you know, it does seem like I am having a pretty crap time and to be honest I am. But I'm still one of the lucky ones. I get to spend tonight in my own bed (first time I have slept all night in my own bed since getting the trachy, wish me luck lol)

And tomorrow, I get to spend the day with my family. So what I cant actully talk to them, but I can communicate in other ways and more so I can watch them. I get to enjoy a meal with them, give them presents, get some hugs and generally have a stressful but fun time.

There are so many people who wont get that. The rest of the patients on the ward, the ones still there, the ones who wont remember much of it as there on morphine drips, the ones who wont eat any christmas dinner as they have just started chemo, the ones who will maybe get visitors for an hour at some point during the day. Then theres the ones still downstairs in ICU the ones that wont even notice any difference in the day. The families of all these people whose christmas wont be the same and all the families who have lost someone recently, who will spend time on christmas grieving.

So sure, I do have sucky circumstances, but they could be a hell of a lot worse. Least I know I have a good team routing for me, looking after me, making sure my body does what it is supposed to do and when it misbehaves, correcting it.

I am so grateful for the team I have gotten to know over the last few months. To the nurses who take time out of their busy schedule to pull up a chair and have a natter, to the ward managers and sisters, who take the time to come for a bit of gossip with my family, to the physio's who have become more a friend than a physio, who have provided invaluable information and help, to the dinner ladies, who bring me goodies and put extra bits in the fridge knowing that I dont sleep well at night and sometimes feel hungry due to being up most the night. Only last night, I was touched by the kindness of the team. I wasnt due a dressing change till this morning, and the night nurses dont usually bother with dressings and such they just give out the meds and settle everyone down. But this one, one who has looked after me since the start, she knew I stayed up late anyway, so after meddies, she came around with fresh dressings and did it there and then, knowing she could take her time and do it much better than it would be done in the morning when the staff were more rushed.

Over the last few months (well 6) that team have become my lifeline. They have been my friends, my family, my careers. Always looking out for my best interest, always encouraging me to keep on going. I owe them a hell of a lot. Hey if you go back a few months to my last arrest I owe them my life and thats not counting however many other near arrests I have had and how many times they have noticed the signs and had me admitted to ICU.

I have had a lot of set backs this year, but I also have a lot to be thankful for. This christmas, Im just going to enjoy spending time with my dysfunctional family. That is all I need, my family at home and later on my family in the hospital.