So on the positive, I am feeling a little better today. I awoke about 10:30 (which is early for me) and I have not napped through the day. I dont know where half the day has gone if I am honest. Did some washing ready for my hols, but had hoped to have my bag packed by now (oh well) instead I have a huge big pile on my bed of things I want to take. (But I might rant some more about that tomorrow. lucky readers huh)
Im still chocking off and on, but generally Im coughing more muck up which has got to be a good start and my temp has stayed stable all day.
I did have a coughing fit before (I have had a fair few today, but this one sticks in my mind.) My dad was napping in the chair in the corner. I started coughing and spluttering and mum knocks me on the arm, gives me a glare to kill, and tells me to shut up as dad is sleeping. Well excuse me for breathing! As horrible as it sounds I hope one day she ends up needing a trachy for some reasons just so she can see what it is like. Its not like normal coughing, you cant shut your mouth and make it quiet, you cant do little coughs as it will just block up the tube and you cant hold it in as it restricts your intake.
I do hate having a trach, but I have had to adjust to it. However, I think mum hasnt yet. Which is kind of annoying. oh unless, we are out and someone mentions something and then she is all 'oww poor her blah blah' as she like the attention, which annoys the hell out of me, as I dont tell people things (I still have the whole I want to be treated normal thing going on) *sigh*
Anyway, this evening, I went with a friend to see Dear John. It was sad in places, predictable in others. The bit that got me the most, wasnt even a sad bit. The song Paperweights by Joshua Radient was playing in the background a couple of times and all I could see was Eva's smiling face from the video she made with the same song on. Its nice to be able to think back and reflect on her being happy, kinda gives you hope you know. I do miss her, but she will always live on through the people who remember her and those whose lives she touched.
Oh and i had another cough/chocking fit, while I was paying in the cinemas, which wasnt fun. I was using my disabled card, so I kinda had to be present as they need to check I match the pic and such. So I just kinda had to turn my back on everyone and face the corner, while making some odd noises.
I am nervous as hell for tomorrow. The nurses are coming out to the house to change my trach tube. This will be the first time it has been changed outside of hospital. Im nervous incase there are any problems with it going wrong and such. But I should trust the nurses, that it is going to be fine. (I hope)
On that note, I should get some sleep as I have a lot to do tomorrow.
(Oh and someone commented on a lot of my entries today, but I cant seem to click into their profile, so sorry if it seems like I am being rude or anything, I dont mean to)
Showing posts with label district nurses. Show all posts
Showing posts with label district nurses. Show all posts
Monday, May 10, 2010
Wednesday, April 14, 2010
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.
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.
Friday, April 02, 2010
London Free Hospital
So I have been a little out of it of sorts since I got back from London. Think I was over tired and it kind of amazed me how long it took me to recover. I mean I am what, 24 and 1 day trip, where I was only really walking around from about 4pm till 9pm, so 5 hours and it took me 2 full days just to recover enough to wash my hair. When I think that it was only last July that I was down in London and going for about 5+ hours day for 3 and 4 consecutive days. I thought i was recovered yesterday, with being in a good mood, but today I can barley keep my eyes open. Went the shop with mum earlier and fell asleep in the car just driving to the shop.
Anyway, onto other things.
So whilst I was recovering I didnt want to sleep permanently (though I pretty much did) so I began making the video that I said I had the urge to make. I have done the bulk of it, just needs about another hour spent polishing it up, playing with sound levels and fixing a couple of transitions.
Tell me what you think so far please. I know it will never do Eva justice, but as I said in an earlier post, this is more for me, to remember her by so Im not even sure if it is going to go anymore public than this blog. Plus there is the whole copyright thing to think of.
My next challenge if I decide to go public with it, is to get around the filters on youtube as it keeps muting the audio. It wouldnt be such a bad thing, but it mutes all the audio, not just the music, so I lose all the voiceovers too. I either need to find different music (but im kinda attached to the stuff I have, especially the last bit) or find a way around the detector.
So seeing as I am working backwards in time pretty much, im going to put down what happened at the hospital in London. I will eventually post a second post of what I did in London, but I am still in the middle of fixing the pics I took. (No tripod and it was wet and miserable so there are not many good ones)
So we get to the hospital, and it dosnt look like a hospital, it looks more like an old fashioned shop (again look out for pics.) I saw the consultant he is supposedly the best surgeon who deals with tracheas in the UK. He had not read through the letter so he glanced down it while we were sitting in the room. Then he asked to see all my medications. He laughed when I pulled out a big bag and was a little shocked at the amount of them.
Once that was done with, came the icky part that I knew would happen but was hoping it wouldnt. He decides to put a scope down while I'm sat there. So first off he sprays my nose with the icky tasting stuff that numbs it and up goes the camera. Now I have had this done a fair few times in the past and it always feels like I am chocking on it, however it was gentler this time as he couldnt go very far down due to my trach (bonus!) I was a little disappointed still though. In my usual hospital when they put the camera down, the images are displayed on a big screen behind me, so I usually ask to be turned around before they start meaning that I get to see the screen myself. (Yes I am a fan of gore) This one however was only a little one with an eye piece.
Anyway. he basically said that my upper air way is very red and very inflamed and it shouldn't be. He therefore thinks that something must be causing the inflammation. He agreed that I should have as much gunk on my chest as I do and that it shouldnt be as thick as it is. So he thinks that something is irritating my throat, creating the inflammation and the gunk. He asked if I had had a swallow assessment (which I hadnt) as it could be something like food or drink going down the wrong way causing it.
He has asked my surgeon here to organize a video fluoroscope, which is where you have to eat and drink different things while being observed and x-rayed. He also wants to get me in for another Bronscopy with an over night stay so he can get a better look. And if the professor person I emailed is free he wants him to sit in on it.
Ultimately, further action will depend upon the outcome of those 2 tests. He did talk a little about tracheal transplant as he knew that was what I had spoken to the other surgeon about. He said if nothing else works, then the transplant will definitely work to fix it (YAY!) However, it is not yet a licensed procedure in the UK. Which means that it could be years before the can legally perform the surgery on me, but im still hopeful. He also said that the success rate is much better if I lost some weight. So thats something I am going to have to work on.
He also looked at my neck, where it has been red and sore. He said it looked like Pseudomonas which is a bacteria that is fairly resistant to treatment. He said if it was this, then the chances of treating it would be extremely rare as it is hard to get rid of given its position. The next morning the nurse swabbed it and sent it off for cultures anyway just to be sure. I do have some bactroban there, but I am reluctant to use it. The bactro ban is a cream that can help clear things like MRSA up, however if you use it to much it wont work any more, so I am only going to use it when it gets to the point of being to sore to manage with normal painkillers.
And I think thats everything. so its all a waiting game at this point. It will probably be June when I next go down to London as the surgeon is away for April and I am away during May.
Anyway, onto other things.
So whilst I was recovering I didnt want to sleep permanently (though I pretty much did) so I began making the video that I said I had the urge to make. I have done the bulk of it, just needs about another hour spent polishing it up, playing with sound levels and fixing a couple of transitions.
Tell me what you think so far please. I know it will never do Eva justice, but as I said in an earlier post, this is more for me, to remember her by so Im not even sure if it is going to go anymore public than this blog. Plus there is the whole copyright thing to think of.
My next challenge if I decide to go public with it, is to get around the filters on youtube as it keeps muting the audio. It wouldnt be such a bad thing, but it mutes all the audio, not just the music, so I lose all the voiceovers too. I either need to find different music (but im kinda attached to the stuff I have, especially the last bit) or find a way around the detector.
So seeing as I am working backwards in time pretty much, im going to put down what happened at the hospital in London. I will eventually post a second post of what I did in London, but I am still in the middle of fixing the pics I took. (No tripod and it was wet and miserable so there are not many good ones)
So we get to the hospital, and it dosnt look like a hospital, it looks more like an old fashioned shop (again look out for pics.) I saw the consultant he is supposedly the best surgeon who deals with tracheas in the UK. He had not read through the letter so he glanced down it while we were sitting in the room. Then he asked to see all my medications. He laughed when I pulled out a big bag and was a little shocked at the amount of them.
Once that was done with, came the icky part that I knew would happen but was hoping it wouldnt. He decides to put a scope down while I'm sat there. So first off he sprays my nose with the icky tasting stuff that numbs it and up goes the camera. Now I have had this done a fair few times in the past and it always feels like I am chocking on it, however it was gentler this time as he couldnt go very far down due to my trach (bonus!) I was a little disappointed still though. In my usual hospital when they put the camera down, the images are displayed on a big screen behind me, so I usually ask to be turned around before they start meaning that I get to see the screen myself. (Yes I am a fan of gore) This one however was only a little one with an eye piece.
Anyway. he basically said that my upper air way is very red and very inflamed and it shouldn't be. He therefore thinks that something must be causing the inflammation. He agreed that I should have as much gunk on my chest as I do and that it shouldnt be as thick as it is. So he thinks that something is irritating my throat, creating the inflammation and the gunk. He asked if I had had a swallow assessment (which I hadnt) as it could be something like food or drink going down the wrong way causing it.
He has asked my surgeon here to organize a video fluoroscope, which is where you have to eat and drink different things while being observed and x-rayed. He also wants to get me in for another Bronscopy with an over night stay so he can get a better look. And if the professor person I emailed is free he wants him to sit in on it.
Ultimately, further action will depend upon the outcome of those 2 tests. He did talk a little about tracheal transplant as he knew that was what I had spoken to the other surgeon about. He said if nothing else works, then the transplant will definitely work to fix it (YAY!) However, it is not yet a licensed procedure in the UK. Which means that it could be years before the can legally perform the surgery on me, but im still hopeful. He also said that the success rate is much better if I lost some weight. So thats something I am going to have to work on.
He also looked at my neck, where it has been red and sore. He said it looked like Pseudomonas which is a bacteria that is fairly resistant to treatment. He said if it was this, then the chances of treating it would be extremely rare as it is hard to get rid of given its position. The next morning the nurse swabbed it and sent it off for cultures anyway just to be sure. I do have some bactroban there, but I am reluctant to use it. The bactro ban is a cream that can help clear things like MRSA up, however if you use it to much it wont work any more, so I am only going to use it when it gets to the point of being to sore to manage with normal painkillers.
And I think thats everything. so its all a waiting game at this point. It will probably be June when I next go down to London as the surgeon is away for April and I am away during May.
Monday, March 29, 2010
Emotional Rollercoaster
It has been one crazy week on an emotional roller coaster.
First I got my letter to go and see a consultant in London, had me jumping for joy (well if I could manage jumping). Then I had a discussion with the nurses that come 3 times a week and we agreed that it would be good at this stage to drop it to once a week and after a couple of weeks not have them out all (except for tube changes.) This left me feeling a little unnerved. I know its good as it means I am getting better and dont need them, I'm learning to cope with looking after myself now. But at the same time its scary because it means I am responsible for looking after myself and then there is the whole what do I do if things go wrong or I get ill.
It was my dads birthday on Monday so I saw my sister and family, which was nice but left me feeling a little drained. Then I found some of my family who I havnt spoken to for a long time on facebook. That was an odd feeling, seeing how much they had grown up and changed. Felt nervous talking to my mum about it but it seemed to go well.
Then I found out about the whole Cushings thing. Im still not sure how I feel about that. Its scary and the treatment options are scary, but I guess I just need more time to adjust and to speak to someone who knows a little bit more about it or about me.
Friday I went for a meal with my parents, which was nice, though I struggled to stay awake the whole time, I felt so drained. I was also filled with self destructive urges.
Then got plans sorted to add some new 'staff' to my volunteer team. This is a huge step as my little team is growing into something to be proud of. It is still int he making, but I have worked hard and gotten everything ready for them.
Saturday I heard about Eva dying. I spent a good few hours crying. She is such an inspiration and so brave till the end. I wish I had some of her class and style. She will always be remembered and has made such a difference to me and so many others.
And tomorrow I go to London to speak with this consultant and hope and pray that there is something they can do to help, to allow me to breathe fully and to talk once again. I would love to get rid of this trach, it is really starting to rub raw at the moment and is so sore.
I couldnt sleep last night. Lot going round in my head. Mainly Eva and London. I curled up with my music on and watched the sun rise out of my window as tears slowly plopped off my chin. My head just does not seem to know if its coming or going lately. Even the whole london thing is marred. I mean yeah, it would be great to be breathing and talking, but then there is the whole ethical side and going back on the transplant list not to mention can I offered the traveling up and down for treatment. But I am trying not to dwell on that at the moment. Im still not getting my hopes up until I speak to them tomorrow and find out what they suggest.
I finally got to sleep around 8am this morning and I was going to have an early night, but as its already 12:20 I think that has gone out the window. oops. So up early tomorrow. Its going to be a long day.
First I got my letter to go and see a consultant in London, had me jumping for joy (well if I could manage jumping). Then I had a discussion with the nurses that come 3 times a week and we agreed that it would be good at this stage to drop it to once a week and after a couple of weeks not have them out all (except for tube changes.) This left me feeling a little unnerved. I know its good as it means I am getting better and dont need them, I'm learning to cope with looking after myself now. But at the same time its scary because it means I am responsible for looking after myself and then there is the whole what do I do if things go wrong or I get ill.
It was my dads birthday on Monday so I saw my sister and family, which was nice but left me feeling a little drained. Then I found some of my family who I havnt spoken to for a long time on facebook. That was an odd feeling, seeing how much they had grown up and changed. Felt nervous talking to my mum about it but it seemed to go well.
Then I found out about the whole Cushings thing. Im still not sure how I feel about that. Its scary and the treatment options are scary, but I guess I just need more time to adjust and to speak to someone who knows a little bit more about it or about me.
Friday I went for a meal with my parents, which was nice, though I struggled to stay awake the whole time, I felt so drained. I was also filled with self destructive urges.
Then got plans sorted to add some new 'staff' to my volunteer team. This is a huge step as my little team is growing into something to be proud of. It is still int he making, but I have worked hard and gotten everything ready for them.
Saturday I heard about Eva dying. I spent a good few hours crying. She is such an inspiration and so brave till the end. I wish I had some of her class and style. She will always be remembered and has made such a difference to me and so many others.
And tomorrow I go to London to speak with this consultant and hope and pray that there is something they can do to help, to allow me to breathe fully and to talk once again. I would love to get rid of this trach, it is really starting to rub raw at the moment and is so sore.
I couldnt sleep last night. Lot going round in my head. Mainly Eva and London. I curled up with my music on and watched the sun rise out of my window as tears slowly plopped off my chin. My head just does not seem to know if its coming or going lately. Even the whole london thing is marred. I mean yeah, it would be great to be breathing and talking, but then there is the whole ethical side and going back on the transplant list not to mention can I offered the traveling up and down for treatment. But I am trying not to dwell on that at the moment. Im still not getting my hopes up until I speak to them tomorrow and find out what they suggest.
I finally got to sleep around 8am this morning and I was going to have an early night, but as its already 12:20 I think that has gone out the window. oops. So up early tomorrow. Its going to be a long day.
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.
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.
Thursday, February 25, 2010
hello brickwall
urgh
Ever feel like no one knows what they are actually doing?
When I saw my GP on Monday, I mentioned that I was still having trouble with the amount of crap and the consistency of it that I was coughing off my chest. The GP didnt know what to suggest but said she would phone the trachy nurse and get back to me.
Well the doctors rang (in the morning when they know and have down on file that I have no voice and I am home alone) to tell me that the doctor had spoken to the trachy nurse. The nurse thinks maybe my tube needs changing (even though I have had this problem continuously since getting the damn tube and its still been present after the last 3 tube changes i have had) or that it might be my central heating (even though I had the same trouble in the hospital where the heating was different.)
So the doctors where phoning me to tell me that I now need to run saline nebs 4 times a day. I explained that I have been running not only saline nebs but also hypertonic (6%) saline nebs 4 times a day each since I got out of hospital and for most the time I was in hospital. The surgery seemed surprised and asked me where I was getting the supplies to do this from?!?!? ermm on repeat prescription from you...... The GP even commented last time I saw her that it was excessive being tied to a nebuliser 8 times a day. *headdesk* She said she would speak to the doc and phone me back.
So when she phoned back the reply was 'Yeah the doctor still wants you to run these saline nebs 4 times a day please till your next clinic appointment and there is a script waiting here for you to pick it up' urmm gee thanks, Ill pick it up next time im there, I only just got my months supply off you 3 days ago so I have plenty here.
Its so frustrating! No one seems to have a clue and the trachy nurses answer to every problem is you need your tube changing!
Right now, I am searching through the drug tariff to get the codes for all the equipment I need to order and such. This shouldnt be my job! What would someone else who didnt know how to search and find this stuff do?!?! The nurses ordered me specialist dressings ermm about 3 weeks ago, still no sign. Trachy services around here really are crap and they dont have a clue how to deal with one.
And that is my little rant for the night. Im really ticked off things around here. Almost makes me want to go out and fix it. hmm one day maybe.
Ever feel like no one knows what they are actually doing?
When I saw my GP on Monday, I mentioned that I was still having trouble with the amount of crap and the consistency of it that I was coughing off my chest. The GP didnt know what to suggest but said she would phone the trachy nurse and get back to me.
Well the doctors rang (in the morning when they know and have down on file that I have no voice and I am home alone) to tell me that the doctor had spoken to the trachy nurse. The nurse thinks maybe my tube needs changing (even though I have had this problem continuously since getting the damn tube and its still been present after the last 3 tube changes i have had) or that it might be my central heating (even though I had the same trouble in the hospital where the heating was different.)
So the doctors where phoning me to tell me that I now need to run saline nebs 4 times a day. I explained that I have been running not only saline nebs but also hypertonic (6%) saline nebs 4 times a day each since I got out of hospital and for most the time I was in hospital. The surgery seemed surprised and asked me where I was getting the supplies to do this from?!?!? ermm on repeat prescription from you...... The GP even commented last time I saw her that it was excessive being tied to a nebuliser 8 times a day. *headdesk* She said she would speak to the doc and phone me back.
So when she phoned back the reply was 'Yeah the doctor still wants you to run these saline nebs 4 times a day please till your next clinic appointment and there is a script waiting here for you to pick it up' urmm gee thanks, Ill pick it up next time im there, I only just got my months supply off you 3 days ago so I have plenty here.
Its so frustrating! No one seems to have a clue and the trachy nurses answer to every problem is you need your tube changing!
Right now, I am searching through the drug tariff to get the codes for all the equipment I need to order and such. This shouldnt be my job! What would someone else who didnt know how to search and find this stuff do?!?! The nurses ordered me specialist dressings ermm about 3 weeks ago, still no sign. Trachy services around here really are crap and they dont have a clue how to deal with one.
And that is my little rant for the night. Im really ticked off things around here. Almost makes me want to go out and fix it. hmm one day maybe.
Tonights cocktail. Pills the bain of my life. or should that be nebs the bain of my life after today.
Thursday, February 04, 2010
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.
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.
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