Frustrated Part 2

Have I mentioned recently how much I hate that stupid trachy nurse at the royal? oh I have, darn it, Im going to re-mention it anyway as I saw her today and she has aggravated me all over again.

So I saw her again today (wow is it really a month since then) as well as my district nurse (dn) as my DN wanted to do her first tube change under supervision. Since I last saw her, 2 different ENT consultants have looked down my throat and both have exclaimed at how red and inflamed it is and they are going to investigate. We mentioned this to her and she just shrugged it off, said most patients with trachs have that stop worrying. Im pretty sure if it was a normal level, the consultants would have maybe, i dont know, been aware of it? Mentioned it? Not wanted to run further tests on it? But of course she knows best.

Asked her about getting portable equipment to take on holiday with me such as a nebulizer and suction. She said, oh I wouldnt know, Trach patients dont need all that. Oh really? I must go and tell those consultants that have stressed to me how important it is to use both, that they are wrong, I dont need them. If I dont use them, I spend most the night coughing and chocking and I spend the day gasping for breath, till infection hits in and knocks me out.

I also mentioned about the tube sitting at an awkward angle. After repeating myself 3 times, she said it was nothing to worry about, I just glanced at my mum in a kinda 'surprise surprise' look. So she had a look and said yes it is sitting wrong. I asked her why this was, she didnt know, but I shouldnt worry about it. I suggested maybe it was being pushed into a weird angle by my stenosis coming back. She agreed that it probably was, but not to worry about it. Its easy for her to say that, dont suppose she has ever experienced her airway cutting her oxygen off from her lungs has she? I mean maybe I am over reacting on this, but I think given the amount of times I have been rushed to theatre, the amount of times I have had to be resuscitated on the ward and the amount of time spent in ICU due to my stenosis cutting off my oxygen, that worrying is a fairly rational thing, that would perhaps respond better to some reassurance rather than a shrug? I mean, what if the stenosis carried on past the end of the tube? What if it pushes the tube so much that it makes future changes harder?I know I shouldnt freak out over this but sometimes I cant help it.

There where a couple of things we asked her, and she either didnt know or pretty much said I was silly for needing it. She mentioned about me eventually learning to do my own tube changes. I just looked at her (I was completely peeved off by this point) so I just said, with a bit of luck, I wont have it that long. Mum laughed, I shrugged and just said, I hate the trach, I hate the appointments that go with it, if I can get rid of it anyway at all, then I will. She kinda looked the other way then and we walked out.

Least fingers crossed I shouldnt have to see her again now that the DN can do the tube change.
I probably sound like an arrogant spoilt brat when I talk like this. Im not, really im not. Ive done all the hospital admissions, Ive done all the surgery, the research, the conferences. Doctors talk to me properly, they explain things throughly and they take into consideration that I want to know what is going on, that I know what they are talking about, I know the jargon and the reasons behind things.

Since my transplant, I have been taught to question everything. What they do, why, what medications they give me and why, the risks and benefits of everything and if there are any better ways to get what I need. I was taught that from ICU. They said, a lot of hospital staff are dumb. Learn the stuff that you have to avoid, learn your allergies, learn what you need to stay healthy. And question everything that is given to you to make sure it is safe.

And that has come into play so many times. I have been prescribe anti biotics that have already destroyed my hearing and ones that effect my immunosuppressant levels and ones that can knock my liver off. But worse than that, I have literally stopped staff from putting a medication in me when they have been stood next to my bed with the needle about to put it in. I am severely allergic to Heprin and Clexane. Under no circumstances am I to have this medication. If I do, it appears to work normal for the first few hours, but then my platelets suddenly drop and I bleed out of every orifice (Which is rather scary, I actully said goodbye to my mum when this happened) So they have to pump you with blood to replace what you are losing, but then my system goes nuts on the platelets and creates tons and tons of blood clots everywhere. Basically if given Heparin, within 3 days, I will be gone. Last time they gave me a tiny (like 2ml or something) of Clexane (which is much much weaker than heparin) and I bled out for 2 days and resulted in having a blood clot in my jugular vein. Hence why if I ever have to have a central line, it goes in the right of my neck not the left as my jugular is destroyed.

And even though I wear 2 red allergy bands, its written on my notes and drug card, people still insist on giving me it. Its standard procedure to use it for flushing lines and such with. So questioning is good.

But the nurse speaks to me like im some senial 80 year old who dosnt even know what year it is.
Just urgh.

Released

So they finally let me out last night (after 79 days) from the ward YAY! It was nice to be able to sit and relax this evening without the hassel of having to get up an go back the ward and all that.

So yeah, had the district nurse out today. She was rather useless. I had to teach her how to use the equipment and do the dressing. She didnt bring the equipment that they had to have before I could be let out, in fact they didnt bring anything. No dressings, no suction equipment, nothing. I had to give her a list of equipment I needed ordering and explain what most of it was. And then she says yeah well your probably better off getting this stuff from the GP rather than off us. *headdesk* What is the point of them then!!

But YAY to not having to be up so early. Although I still have no voice.

Didnt get a chance to talk to my surgeon this week about the referral to London as he appears to be off all week. But hoping to get an outpatient appointment with him soon as possible.