physical update

hmm
I have spent all evening wondering if I should write this and how to attack it if I do write it.
But I began this blog, in hopes that if someone was going through something similar they would know they are not alone. Mainly I wanted to share my experience with all aspects of it, so I am going to detail it.
However, I want to make it clear to myself and everyone, that this, this isnt a rant or a moan or anything like that. Its just how it is right now.

In my usual hospital, I have gained a bit of a reputation. All of the staff there know me and they all know that if I start to get ill, something needs to be done pretty quick. I am known for going down fast.
Every time I have gotten sick, I have gone from well to needing hospital in 2 days if not 2 hours.
This time is different. Yes I have been feeling tired, but nothing that has overly worried me.

Over the last few days, I think I have started getting more breathless.
Its not much, its not something that would be noticed on a day to day basis.
But when I got back from London, 2 weeks ago give or take, I could walk fairly fast up the stairs. Yes I would be panting when I got to the top, but I would be able to carry on with what I was doing or picking up whatever I had gone up for.
Tonight, I have just walked, fairly slowly up the stairs as I was behind mum, but when I got up stairs, I had to stop and sit down for a few minutes till my breathing settled.

I noticed this a few days ago, but I put it down to being a bad day.
I still am hoping it is/was a bad day.
But in my mind, I'm spotting other things.
The problem is, are these new things real? is my breathing getting worse?
Or am I panicking? Is it stress? Is it psychosomatic?
These are answers that I dont know.

Usually, when walking, if I start to feel excessively breathless, it usually means my inner tube as clogged. I am able to take it out and change it and clean the old one. This has pretty much become an automatic movement, kinda like getting a tissue out to blow your nose. Today, a couple of times, I found myself in the midst of changing the tube, however, when looking at the tube I was taking out, it was pretty much clear, not how I would expect it to look if it were clogged.

When I got home, I thought I would pass a suction tube just to make sure there was nothing blocking the end of the tube just incase. If I am honest, I have been avoiding using my suction. I dont like it, but I dont want to get used to having it, I would rather work on strengthening my cough.

The tube passed with only a small amount of resistance, which is odd as there isnt normal any resistance. But it felt kinda different. It felt tighter, more restricted. However, im not guaranteeing this as a symptom as it has been a while since I passed a tube, so it might just be me working myself into a worry.

I'm not overly concerned yet. As I said it could be all kinds of things. My chest could be too dry, it could be the beginning of a chest infection, it could by psychosomatic, it could be that I am over tired, it could be a whole host of things.

The thought is still in the back of my mind though.
Mum said, that while in London, the surgeon said that my lower airway was also narrowing, as in below my trach tube. I didnt know this was possible and I'm still not sure.
I didnt hear him say it, but then that could be a result of crappy hearing and/or post anesthetic brain.

I have not mentioned this to anybody yet. This isnt something I am overly worried about, sure its on my mind, but there is a lot more ahead of it in my mind.

I trust my team and I know that, should it be something like lower arway narrowing, that they will look after me and sort it. In like 9 days time I have an appointment with my surgeon up here where x rays will be run, the week after that I have an ENT appointment with my other surgeon, then I have London. And worst case, it is bad when I get to london, I will be going to theatre that day anyway so they can get a proper look and sort it. In between that, I can (well mum can) phone my ward or the GP will fit me. And of course there is the option regular people have of A&E., though I am told , where possible to avoid A&E. A&E tend to like to want to fiddle and save the day. They like to do procedures in ressus in the name of stabilizing you or assessing you. Heres where memories of being put on CPAP come flooding back so that the doctors can lie me flat enough to attempt for the 12th time to insert an arterial line. Plus A&E, is riddled with infections, which would be bad right now.

So the plan is, to continue to ignore this. I am pretty sure it is going to amount to nothing and I have back up plans. And I am feeling ok in my head space. I can deal with this. This isnt scary, this isnt forever and things ARE going to improve.

How great would life be if we lived a little of it everday.

So its time to stop being whiney.

Why should I be unhappy about not being ill? (double negative make a positive uh im rubbish at grammar meh)

No I dont have tumor, but I do still have the symptoms, so I am not making it up. I am also recovering from a rather intense few months where I was pretty ill. They dont keep you confined to bed rest in ICU for nothing. Yes I do feel crap at the moment, but I have beaten worse this. I have come far.

Tonight is a night of reflection. Yes I have had some pretty big set backs and I accept that, but what matters is that I keep trying, you never know what is around the corner right? When I was in ICU with my transplant, my mum took photos, when I would let her. Most of the time I sulked and said your taking a photo of me while I look like this, of course I wasnt always awake so it dosnt always work like that. I have 3 of them on my computer, i must find the others and upload them at some point. The three I have are not very good as I think I had to photo them to get on here, again will get around to fixing that at some point. But the purpose of these photos, was for when I started to get better, I could see how far I had come.

These two are from the first hospital I was and so was before my transplant and tracheostomy.

Ha check out the tan, gotta say I didnt look to bad for liver failure. Tube in my mouth was to keep me breathing, one down my nose was to keep my stomach empty of things such as bile and acid. Central line in my neck to give IV medication and such, catheter in my bladder to drain out urine, lots of medications including knock out meds and pain meds.

This was was taken post transplant (which happened on 14 December), but must have been after christmas as I have my trach in. I am also guessing it was before my birthday as I still have a feed tube down my nose in this one, but my stomach could not tolerate food, so I later had a peg tube put through my abdomen into the lower part of my stomach.

                                     

You cant really see it on this, but there is a thick red line across the pillow going to the dialysis machine as my kidneys shut down, which you can see looking at my size difference from the top picture. I just ballooned up in a  matter of days. Oh and the dude in the white coat, nope thats not my doctor, thats Jimmy Savile, not that I even knew who he was, or where I was for that matter. I also have a blood pressure cuff on instead of the usual measurement in ICU with an arterial line, as they had to take out the least important lines when I bled out and started getting clots.

So if I can get from that, to the point where I was able to partake being a full working nurse, I can improve on where I am now. Its just going to take some work and some time. But there is no rush. I will get there when I can.

I will be going on holiday in 28ish days, for almost three weeks. And when I come back? well then it will almost be time to go to London. I am going to try to use the holiday as a rest period. Nothing expected of me. I wont be doing any of my usual online work, I wont have any appointments and I will have time to sit and read, sew, play with my camera and mess around with photoshop. I can rest fully and take care of myself properly. The sun, will hopefully also do me good. Plus, being away with my parents, I will more than likely end up in a decent sleep pattern of a night.

Once, i get back? Then I think it is going to be time to get my butt into gear at getting well. I need to cut the crap out of my diet and lose some serious weight. Ideally I would love to lose about 5 stone, but even losing 1 would make a huge difference, so that will be my first goal. Im not going to go on any stupid crash diet nor am I going to join any expensive club like I did last time. Im also going to try to avoid weighing myself weekly and such as I know if i dont have a good week, I will just throw the towel in. Im just going to cut the crap out, cut down on my bread intake, increase my fruit intake and see where that goes. Im also going to try to force myself to do 40mins on the wii every night, and might thrown some running up the stairs in too.

The doctors can only fix so much, the rest I need to take responsibility for and do myself.

Its been a while

opps So I just relised that I have not updated in like 9 days.
Its been busy and very tiring.

I have mostly been spending the night on the ward, going to physio/gym first thing in the morning (which is a killer on its own as I have to be up, showered, dressed, medicated and had my breakfast all by 9:30 and I really am not a morning person) Then I have been mostly going home after dinner which is when people have coming out to the house for assessments such as fitting a panic alarm and such. And when the afternoon is free, generally being dragged out shopping 'to give me some fresh air'. Back to the ward about 7 and trying to fit in some wii when i feel upto it as more physio.

Then Friday was my birthday. The nurses woke me up mega early to sing to me and give me a present. They bought me some lovely pjs with like a hooded top to go over them and slipper socks. Was really nice of them. Then my parents took me out at dinner time. We went to a new buffet place in town called red hot, it was really yummy and I cant wait to go back again! Then when I got home my sister and her kids visited and then after that my friend. So it was a very long day and I was absolutely shattered. So much so that I felt really rough and flu like all day saturday and most of sunday.

I have spent the last couple of nights drafting up a email to one of the surgeons who was on the news last week after successfully managing a tracheal transplant. One of these would turn my life around! It would get rid of the trach, it would sort my voice and upper airway out and hopefully fix my breathing. And with it being your own tissue should mean that I would get less crap and junk on my chest so limit the meds/treatments/cleaning and infections from it. But it is a very long way off from becoming a standard procedure. My current surgeon says that it wont happen in his lifetime as a surgeon so where talking 20+ years. So I thought by emailing this guy, I might just get my name in early hehe. Although im not getting any hopes up and doubt that I will even get a reply off him. But it was worth an email.

Today I had surgery again. They basically did the same op that they performed on the 23 December. He says  what he has done will not last and it will collapse again pretty soon and to be honest I think it already has. Apparently he removed a lot of thick fibrous tissue, more than he was expecting too. But he dosnt know what to do next. He seems to want to get my trachy out and restore my airway, but my other surgeon who has been trying all kinds of different things, wants to restore my voice and get me home to recover. I dont know who to put my faith in.

Todays surgeon claims he knows someone with an intrest in tracheal reconstruction and is going to talk to him and see where to go to next, but my other surgeon said there is too much damage for reconstruction. urgh I just feel like I am going around in circles and not getting very far. Maybe I will just let them fight it out.

Or at least give it a few days as coming around from todays surgery was very very off putting. I was in so much pain I was practically crying (If you know me you will know this is rare) The pain meds they were giving me where making me want to throw up and i was shivering and shaking so violently they asked me if I had an history of epilepsy. Overal not nice. Then I spent the rest of the afternoon sleeping, even refussing drinks right after surgery, which again is odd for me as I usually drink gallows, especially when I first come around.

So maybe more sleep pretty soon I think. And review when im feeling a little bit better after today.

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.

On Christmas, Hospital, and choices

WOW its like a week since I have written. I didnt realize it was so long. Guess, I have been pretty busy (well not really busy but doing other stuff) this week.

I have been going out during the day most days. Most of the time I go home and sleep in my own bed for a few hours, but I have also been out shopping a few times (with the aid of a wheelchair) and I have managed to do the majority of my christmas shopping (just one left to get)

Its been rather surreal. I came into hospital in November and there was no real sign of christmas and it wasnt that cold. Now when I go out I see all the decorations going up, hear the carols on the radio, see the ice covering the ground, see the snow falling and definitely feel the chill of the December air around me. It feels kind of safe to come back to my room in the evening. My room where the only sign of Christmas is the advent calendar on my shelf and 2 christmas cards on my window sill amidst the get well soon cards, where the temperature is constantly controlled day and night. Its easy in here to pretend that Christmas isnt happening, that being out is merely a dream. That is until I open my blinds and see the Ice rink outside my window that appears on the flat hospital roof.

Its not that I dont want christmas to come. I mean I  used to love christmas, before the whole incidence thing I mean. But accepting that it is actually coming means admitting how long I have been in here for and how much there still is to do. Usually by this time of year, I have cleaned the house top to bottom, shampooed the carpets, helped get all the decorations up and tidied. My mum has usually made christmas cakes for all the family and is moving on to eccels cakes and mince pies. We have usually spent Saturday nights watching films while doing all the wrapping up. Under the tree is usually overflowing with presents all ready to be opened. But not this year. This year everything has gone on hold. Everything has stopped while I try to get well again.

Its pretty sad. It kind of reminds me of 7 years ago. When I skipped christmas and everyone around me just went through the motions for the sake of the kids. The kids are older now, they understand more. But of course that dosnt make things right.

In other news, my voice has pretty much gone now. If I really force it, I can just about get a squeaky whisper out. But even that takes a lot of work. My two surgeons are arguing about what to do next. One of them wants to change the tube to one that will hold my upper airway open as well. That way my voice will be restored.

But there are a lot of issues with changing this tube. For starters it will be a smaller tube, which means I would be more breathless than I am already. Considering I struggle with stairs and cant walk to far without nearly collapsing as it is, becoming more breathless is a bad idea. I would imagine it would probably mean using a wheelchair the majority of the time. And bear in mind that this would be for life, not just for a recovery period.

Then there is the issue of cleaning the tube. At the moment I can just take the inner tube out and clean it, when it gets blocked. I wouldnt be able to do this with the new tube, so I dont know how I would manage to clean it.

But on the other hand, I would have a voice.

I think I need to sit down with my family and both surgeons (hopefully when I have a voice) and discuss the options, pro's and con's and decide then. They have booked me in for surgery on the 20th January although im not sure what they intend to do then.

I am also booked in for more surgery on the 23rd December. My ENT surgeon is going to try and temporarily widen my airway so that I have a voice once again. If im lucky I will get christmas out of it then.

I have a lot to think about. I have a feeling 2010 is going to be another one of those bumpy years.