Wednesday, March 03, 2010

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.


  1. How effing aggravating. I hope you get it sorted out. I would be fit to be tied.
    Isn't there someone else you could talk to about all this? I'm guessing that if there was then you would already be on it. I hope something else works out.

  2. Nope cant see anyone else.
    The way things work here, is you are basically allocated a hospital based on the area you live in. So your long term care has to come from them. It is rather annoying. I mean once everything is sorted out it should be smoother running, but then I guess i am more demanding than most patients. Most just kinda say, well thats what they are offering, thats what I have to take. Where as from experince and research I can say, well I know I can get better so I am not setteling for second best.
    Just damn annoying as I am in pain and very uncomfortable at the moment, while I wait for them to change an order (that will take them about 2 minutes)

  3. Y'know, they really don't seem to realise that even half a millimetre can make a huge difference in the airway.... I'm with you on the scary coughing too, and to attribute it to 'dust and central heating' was pure ignorance on the part of that nurse. I guess I was lucky when I first had a trach, as the nurses in Chester were pretty clued up. I would have gone pure bananas if I'd had to deal with the nurse you had, hahaha...