urgh it has been one very long day.
I left our house this morning just after 10AM. I got back just after 7pm.
Went to Thoracic as planned, when I arrived they sent me for a chest x-ray. Kind of expected, but still takes time due to having to strip my top half down and then get dressed again afterwards. Then we waited, but clinic was delayed by almost 2 hours. (fun eh)
So Finally got in to see my consultant. Told him about the general lack of sleep and all the other fun things like 40 min coughing fits and generally feeling crap. He basically said theres nothing he can do, Im on meds for it and the tube cant come out so its something I am going to have to live with. However, he wants me to do my nebs a lot more frequently and to try using my suction instead of coughing of a night. This will hopefully clear it better, but will also save energy and save from having aching muscles from the coughing. Which is fine, but means i do have to fully wake up and sterilize and stuff before i can go back to sleep.
I also told him about the prospect of transplant down in london and ask him to refer me. He explained about it being a really new and not tried or tested procedure, but as I said things cant get much worse. I have no voice and i have a trachy. If this fails, I just have to keep with the trachy. So he has agreed to refer me and is interested to hear what happens. He will also see me again in a month.
Because that clinic was running so late, I had to cancel the nurses coming out to check my wound site and dress it, which was no big loss.
Next appointment was cardiology as my GP reffered me months ago when my blood pressure and pulse were really high. This consultant didnt come down for his clinic until just over an hour after it started, so again sat and waited. Then they couldnt find my referral letter so waited again. He looked at my ECG and X ray and said everything looked fine and that the GP can deal with it as there is nothing serious going on and the raised numbers could have been from any of the medications I am taking. (made me feel a bit like crap really for taking up his time, but one less clinic for me so im not complaining)
Then was dermatology. She was cautious about prescribing me anything as the surgeons had taken me off it previously, plus she was not happy with my blood pressure so wouldnt prescribe half the stuff she normally would (Yeah this was like an hour after getting discharged from cardio *rolls eyes*) Eventually we decided to give a course of anti bioitc tablets a go (oh look more pills) and see if it helped. She then also prescribed me a hydrocortisone cream to use on my trach site where I am having a lot of wound issues.
As I had missed the nurses this morning, and because my neck was getting increasingly painful to the point that I couldnt turn it more than 15 degrees either way, mum recommended going to the walk in clinic on the way home and ask them to take a look to make sure it wasnt infected and also for them to redress it.
So we waited there for a while, with a waiting room full of people coughing and spluttering with chest infections, while I tied my scarf a bit tighter hoping not to catch anything. Eventually went in, explained the problem and such and got this big huge lecture off the nurses there about how nurses shouldnt be doing my dressings, that my wound was part of me and I should take care of it. Didnt take into account that I had that many problems where the skin was breaking down and where I was picking up infections in it due to being immunosuppressed that the nurses wanted to keep an eye on it. Nor the fact that I could just about grit my teeth and bear it if someone else cleaned it and dressed it, never mind having to inflict it on myself (and yes I am a self harmer, but this pain is differnt)
So by the time I came out of there, I felt like a 5 year old who was still wearing nappies or something. She still didnt dress it or check it for infection, but did give me a cream that is suppossed to be good to use on it.
So eventually got home and had my tea, which was good as I had eaten breakfast and lunch on the run so it was nice to sit down. Then I needed a shower so had that (exhausting but I will save that rant for another day) and mum helped me with my dressing (though she did refuse to do it until after her tea had gone down, ge thanks is it that gross? but then I cant blame her really meh)
And now im sitting on my bed looking at the clock and wondering where time has gone. I have to be up in like 6 hours for physio tomorrow morning. (Which im not looking forward to as I have hardly done anything this week due to feeling like crap an yeah)
So tonight my suction machine is next to my bed and all set up. oh the joy tonight is going to be.
Anyway enough ramble for tonight.
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