Saturday, December 07, 2013
I am home and sleeping in my own bed, for what feels like the first time in months. In truth its only been about 6 weeks, but the fact that 6 weeks isnt a long time to be away for, shows where things stand.
After hoping to be discharged from London, I knocked heads for the first time ever with my consultant. I was feeling pretty grim, my mood had bottomed out and for the first time ever, I actully begged my parents to come visit because I just couldnt stand my own company any longer. I mean when have I ever been clingy. Now is not an ideal time to start.
The consultant said there was no way he could discharge me, as my airway was a mess and without imediate treatment, I was in danger of dropping my oxygen levels again. there are only so many close calls you can go through before your luck runs out. I couldnt stay so far away from home any longer though. After about 40 minutes of negotiating, I talked him into letting me be transfered to a hospital closer to home for IV antibiotics and I will be readdmitted on Monday for surgery.
I used to deal with these things, these complications, like they were nothing. Take them in my stride and make the most of what I can. But these days I seem to be a shadow of my former self. This year I have spent more time in hospital than I have at home and the cracks are begining to show.
Mentally I am struggeling, and what terrfies me, is ending back up in a deep depression like I had a few years back. I just bearly made through the last depression, and only then due to friends and hospitalisation. Now, things are much more complex and to lose control, however briefly, could be much more disastrous. These days, I have much more access to harmful things like medication and its not uncommon for me to be home with direct venous access to my heart. I dont want to get tot he phase where I no longer care, to be at that point, would be too late.
But its not just mentally. Physically, my body is no longer able to keep up. When I first started treatment, I used to be able to travel to London, go to theatre and return all in the same day, now it is closer to 5 days from home for the same thing. I have many more complications, much more infections, more chance of things like clots.
So after this admission, the aim is to take 6 months off from treatment. I am not niave, I know what that can mean. I will get more breathless, I will lose my voice, the infections will get worse and my airway will scar up. After 6 months I have agreed to review things, but chances are nothing is going to have changed and so I dont think we will restart treatment. Delaying the inevitable seems pointless.
I used to compare myself with others, used to think, I cant be that ill. Ill people have lots of A&E trips, lots of rides in ambulances and lots of complications. I never had them. But this year, things have changed a lot. The amount of trips I have done this year via ambulance is just silly and thats without counting the ones I have talked myself out of. Its at the point now, where A&E staff actully remember me and the equipment I need to keep close to home has doubled.
So I am looking forward to some time off. Some time to regroup, to heal. to find myself and evaluate at this point, what I want to achieve. I always beleived that I could be anything and do anything that I put my mind to, but even that now seems to far away.
So I am taking a step back. Seeing what things take my intrest once again. Finding myself and rebuilding what is important. It is the only way i know at this point to save myself. But what that will mean long term, may not be as viable with a long and healthy life as I may have orginally hoped.
To say that I am not sad, would be a lie, but I know that I went with the right options from the start. I still lie my money with my current surgeon for one day fixing the issues I have and I am still part of the research comitte that is looking at treatment for tracheal issues. I play a fairly important role, on a trial streering comittee at present, which is something that I am very proud of, given that I dont actully hold any qualifications.
But more of that some other day. Right now, its nebs and bed, as my airway is still misbehaving, I am needing to sleep lots.
Thursday, November 28, 2013
The last few days have been a roller coaster of emotion that I am only just beginning to come down from. I feel that I have been balanced on a needle point, starring into the abyss.
Pure fear and exhaustion is only just leading me to review my stand on things and is leading me to question everything.
What I'd risk, and how much an I prepared to risk in hopes of small gains.
I have a lot of choices to make over the next few weeks, one that could change everything. But right now, my nerves are raw, my heart heavy and my head Cloudy. As my body recovered from a new round of torture and I examine what is left of my soul. I have to wonder. will it all have been worth it in the end.
Wednesday, November 20, 2013
That being said, god knows how many lives I have left.
Continuing on from my last entry, I went home with the tube stitched into place close to my collar bone. The aim was set to try and form a new place that the tube would sit more happily. The surgeon declared that where he put the tube, was in a nice strong part of my trachea and he had no doubts that it would support the tube.
So a week later, off I toodle to London, still high on painkillers, for them to check things, take out the stitches and change the tube. All of that actully went without problems. I was only in the waiting room a few minutes, my favourite clinic nurse took me through and prepared the room and my less than favourite surgeon checked my airway. He said below the tube looked perfect, when I asked about above the tube, he just mumbled something about inflammed, but would say little else. I gathered it would be inflammed, given that any movement was still agony and I was having to carry morphine around in my handbag, just to be able to get on with things and drink without crying.
So tube changed, spent a few hours in London, including KFC for chips soaked in gravy and Harrods to marvel at the overpriced christmas tat.
The next morning I awoke, to find that my trach tube, was not quite sitting in my neck properly. After further exploration, I found that about half of it was sticking out my neck and only the ties to hold it in place were stopping it from coming right out. I tried to push it back in, but to avail. I also noted, as I paced around the house trying to think who to contact first, that I was getting increasingly breathless, to the point that it was getting dizzying.
That decided things. An over night bag was packed and off I toddled to the wonders place of A&E. Given that my breathing was effected I was seen pretty quick. Soon I was under the care of the ENT team and though the doctor seemed a bit clueless, I had to trust that he knew what he was doing, else he wouldnt be a doctor. It was declared that there was no way that tube was going back in and so every cupboard in the hospital was raided for trach tubes. After trying at least 10 differnt ones, I begged him to just secure my airway somehow and ship me off to London. That wasnt really an option and so after calling his boss, they found some sort of ancient tortore device/ tube like thing, that was flexiable. This allowed him to insert some of it into my airway and secure it in place. Leaving me with a rather attractive trunk, where about 30 cm of it stuck out my neck and just hung there. To be honest, rather than a trunk, I was more reminded of a an animal on heat, as if parading for all to see. After swopping various jokes with my dad abotu being able to have better aim when blowing malteasers across the room and the benefit of being able to wear poloneck tops again, it was decided that I was to be transfered to another hospital. One that I had never been in before, but it was the only one with anesthtics on call all night should I need them.
Dad went for subways, as we had had no tea. My chicken, bbq sauce and cheese sandwich somehow turned into a steak and chesse sandwich that we shared. Though after one bite I had a big coughing fit, so by the time I got around to eating mine, the ambulance crew were at the end of my bed mumbeling about how good it smelt.
So then there was a mix up at the other hospital. The nurse on charge was on a power trip, declaring that no way had a bed been saved for me. Cue me back in resus and waiting ent to check me over. Turns out there was a bed after all and by about midnight, they let me go to it.
I was exhausted and knew nothing about the ward, but the staff where nice and it seemed clean. I took my meds got into my PJs and got into bed. When my obs were done, it turned out my oxygen levels were a little low. So they tried to clear the tube, but could not do much with it.
Around this time I drifted off to sleep. The nurses checked on me a various points, but despite increasing my oxygen supply, my body was getting lower and lower on what it had. At this point, my memory comes and goes, due to my brain switching off.
A dr came to the ward and after checking the tube, found that my body was yet again trying to push the tube out. In doing so, it had blocked most of the tube. She decided that the best option would be to change the tube. The first tube came out no problems, but the second tube refused once again to go back in. My trachea inflamming as it does, was giving me a lot of pain and whilst the dr was trying to get another tube in, my oxygen levels were once again falling.
This quickly turned into a full emergency and the next thing I know my bed is surrounded by doctors. As I was obvisouly more concerned about asking if I should remove my tshirt and put a gown on, or that I only had one name wrist band when theatre require two. Well cant say I am not level headed in an emergency.
They managed to cut up some suction tubing and to get that into my trachea to keep it open. Whilst I held the tubing steady, we did a high speed run to theatre. Good job it was only 5am, else we may have run some people over. Straight into theatre and they start trying to get tubes in. They found one that half went in, all the while talking to me, doing that annoying thing from films, stay with me, like you have a choice about going. At which point they decided that they needed to push the tube in with force, else it was likely that my heart would stop from lack of oxygen. They pushed and pushed and just as I could bear it no longer, tears streaming down my face and trying to scream in pain, the anesthtic doctor knocked me out.
Things were very disorientating, when I came around. My mind was in fragments. But the general gist of it, they got that tube in and managed to get oxygen back into my body before any lasting damage was done.
The tube currently sticks out my neck by about 10cm and is stiched in in 4 places. I need to keep it permantly humdified else it will block. It has also required adjustment a few times since its insertion. That was Thursday. And there was talk of emergency air lifting me to London. But luckily things stabalised and as I reach the week mark, I am now safe enough to be transported to London in an ambulance. Though, its never that simple. The ambulance will only take me, if I am acompanied by a surgeon and an anesthtits incase of any problems. Thats a lot of man hours and nhs money. But there are no other options right now and so that is the plan for friday.
What they will do once I am back in London, I have no idea. Is the solid part of my trachea is now messed up, then what options do I have. Once again, whilst flashbacks from last week still haunt me, I am left with questions concering things like, will I get out of hospital again? I nearly didnt get to see this christmas and though I tell my family I love them all the time, I have since given them all an extra tight hug. I dont know what next week will hold. I have to take it once day at a time. Stay stable for transfer. Complete transfer and then, who knows. Slow and steady wins the races. But I do wonder, how many of those 9 lives do I have left to play with.
Monday, November 11, 2013
So Monday I was admitted to hospital and Tuesday I went to theatre.I spke to my surgeon in the anesthtic room, where I usually seem him. He said he would like to have a try with a T tube. Which is kinda what it sounds like, the tube is shaped like a T, with the long piece coming out of my neck where my trach currently sticks out. The thing being is they tend to block easier and are a smaller opening. I had a lot of trouble with it last time we tried.
We are short on options, so we decided to go with the usual steam of laser and dilation and anything else he thought may help whilst he was there. With the aim that in Januaury, we will review things and review the T tube again.
With that, they knocked me out with the gas, as they couldnt get any lines in so they were going to do it once I was out of it. Good job really, I came around black and blue where there had been at least 7 attempts, plus at least one tissues and flooded the skin instead. I had one cannula in place in the end, down the back of my wrist and up the inside of my thumb.With many many layers of tape on it to support it.
But none of this I took in at first. The first thing I remember wastrying to scream in pain. I never scream in pain, but this was intense. I also have very little vocal function right after surgery and so my scream was probably more of a squeak. They gave me pain meds, then doubled what I had, but I was still unable to breathe properly through the pain. I was panting, hands clenched into fists. It was exhausting and trying to make myself heard, was frustrating. It was almost as if they didnt believe I was in pain. They kept saying things like, you have had all we can give you, so you just have to wait now and we will get you back to the ward. The thought of being stuck on the ward, were I wait hours at best for pain meds terrfied me even more. But I felt so vulnerable, so just noded in agreement. The recovery staff kept speaking to the ENT team who increased things for me. She came to check on me at one point and just said, you do not look comfortable at all, at which point I just broke down, at last someone was listening to me. I almost begged her to knock me out because I couldnt deal with it. I have done painful procedures, but this was only meant to be laser, easy surgery.
At last pain was under control and so recovery rang the ward for them to come up and collect me. And this is where the wait hit in. They did this to me last month. They kept me waiting two and a half hours last month, because they were too busy to come and collect me. Sitting in reocvery for a prolonged time is so frustrating. There are no toilets, so you have to cross your legs or go down the bed pan route. Then you miss your meal, because your not on the ward and once they have phoned the ward they cant give you any more pain relief as the ward could come at any time. This time I waited just on 2 hours. Same nure again. I get on with all the staff apart from this one nurse.
Finally on the ward and my pain was building up again. No sign of my nurse, no one could find her. My pain levels were reaching maximum and I was feeling like crap. I came so close to just packing my stuff up and walking out. My thinking was that at least if I were at home, I would be able to control my own meds. Just then, hand over staff came on and as I say, I know most of the staff now, they know I dont complain, so walk in on me with tears streaming down my face, mutttering about self discharge. The nurse soon figured out that it was pain that was driving me that me and within a few minutes, she had gone and goten my pain meds. Even though she should have been in handover she sat with me for 20 mins while the meds kicked in and my heart rate came back down. I have never been like this before. I have never needed anyone, but then I had never had pain like it and I admit that the whole thing scared the crap out of me. As has the following week really.
Wednesday I spoke to my team fully. They are still shocked at just how much my airway scars up and closes in the short space of a month. They know that in between I have no real quality of life. I guess that is a subject that has come up a lot recently, quality of life.
They were not sure if the breathing tube pushing up is causing the scar tissue to appear faster. Though we have tried keeping the tube tied down before, it still tends to break through the tissue or strings. So this time, they have dug a channel out, the lower end of which they think is much stronger than the rest of my trachea.
They have put the trach tube into this channel and stitched it in several places, very close to my collarbone in order to hold its place. I go back Wednesday for them to see what has happened, with the aim of taking the stitched out.
Personally I dont think that it will stop the tube heading up, but I am willing to go with it with my fingers crossed. In the mean time however, my pain has lesseend, and yet I am still in a great deal of it. Inside my neck, along my glands and across the front where it is stitched. All causing there own variety of pain. This is making it difficult to cough and to add to the baf, my chest is sore and my chest muscles ache. But fingers crossed that will all settle Wednesday.
And that brings me to my current issue. In recovery, they pump me full of all kinds, most of which has no effect these days. Morphine, fentanyl and tramadol. And of course the wonderful back up of ketamine.
But when I am home, pain meds are a little harder to control. There are so many of them that do strange things to me. For example oral trammadol, is like taking smarties, I dont get any helpful effect at all. Other meds like Oxynorm, send me crazy, to the point where I dont know who I am or where I am. This leaves me with my go to meds, mainly oralmorphine. But the side effects get worse each time I use it. The itching was always the biggest problem, but that could be managed with enough creams and piraton. But now, the oralmorphine, leaves me with insomnia. For this admission and to get me through, they have prescribed me some zopiclone sleeping tablets. so I can keep the pain under control as well as getting some sleep.
But now, I am finding it harder and harder to stay awake. Today, I got up just before 12. By 2 I had gone back to bed and didnt wake 8. Had some tea at 8:30 and proptly fell asleep with my fork still in my hand.
tonight, I am droping the sleepers, in hopes that I can spend some times awake tomorrow.
And apart from that, heres hoping Wednesday brings good news. for my body can not take anymore.
And know you know why my writting is so awful. I find myself falling asleep mid typing or mid conversation or just in general. My head cant help but think, is this what the end will feel like? And how long would I hjave till I hit that point.
I mean, how much and how long would you carry on fighting if there was no chance of change.
Delieghtful thought to sign off with, but always good to show my brain is still workin.
Sunday, November 10, 2013
I have mentioned about spending some time in London to work with a team of researchers. Well, inbetween that, I was able to stay at a friends house. Whats more she even let my niece stay too. Its strange seeing them talk together now. Last they met, my niece was merely a child, but now she is the whole person of her own. I am so increadably proud of her.
We had aimed to go visit the Harrods Christmas Parade, but the parade was mega early and without huge costs in energy, there was no way we could do it really. So we slept in a little later and still had a fun day.
The friday, we visited Westfield and I took her past where they do the filming for BBC Sherlock (Its our little obsession together. We often through quotes at each other from it.) As it got darker, we met with my friend and went to watch a firework display. I think it has been a while since my niece has been taken to a display, but she was mesmerised by it. By this point I was getting rather very tired, so I put my arms around her wiaste and my head on her shoulder. She thought I was simply cuddeling her and so we stayed like that for a long time, I do hope that she is able to keep the memory of it being a cuddle, rather than it being her supporting me and keeping me upright.
Saturday, as I mentioned we missed the parade, but we had to go for a harrods visit anyway. I am a big kid and so we spent a long time sitting playing with the toys. We spent the evening in China town, looking at totoro and other random things. Followed by a night collapsed in front of the tv eating cinnabon. It was very yummy.
Sunday, she had to get the train back for school, but that left time to visit Camden for some further retail therapy. We even found a a stall selling deeo fried oreos. Not had then in over year, but they were si good. I also bought some new boots (Dr Martens and cant wait to wear them properly) She was back on the train home long before I wish she had to go, but it was an increadbile weekend and I hope to do it again one day,
So that bring me back to Monday. I had the reaserch meeting and then I was admitted to my usual ward. After spending so much time on this ward, everyone knows me and I end up stuck having conversations with every on the ward.
Im skipping over the details so not to bored people.
Tuesday morning was theatre morning. As usual, shower and dressed into a sexy gown. Saw my surgeon just before going under. We spoke about future options. He wants to try putting in a T tube again. I sad we have been there and it didnt help.
He still thinks that it is worth trying and so we are going to review in January. So this time, they decided that the tube is pushing up on the new area and causing it to damage. Really? I mean im ssure I have been telling you that for the last 3 monthsl
So anyway, banter aside with the theatre staff I awoke and was actually feeling warm, which was amazing as I am usually freezing. But then the pain kicked in and I almost shot out the bed. I was in agony and the heart montores were going crazy because of it. After lots of disscussion, they started uping my pain meds, all the while talking to me like I was making things up.
Now I am going to stop here again, as I keep fallling asleep mid sentence. but yeah, nothing great and still pretty wired.
Saturday, November 09, 2013
It has been a long week and so I am going to start from the middle, for where is a better place to start than right there.
I am not sure if I wrote a while back about a committe I had been asked to join. I now can not write to much, but to give the basics of it without breaking protocol, there has been a huge funding investment made into regenative medecine. This is the area that my surgeon is hoping to work on and the reaserch could change everything.
To try not to be over dramtic, it is looking at the use of stem cells and the ability to grow new things from them. Now where this concerns me, is that the first places this has been used, is in the area of tracheas. It is a technology that one day, could mean that no body has to go through the issues I am having. That a new trachea could just be grown for them. And to go even deeper, it is a technology that one day maybe able to be used to grow anything a person needs. Be it an organ, some tissue, an eye or even a lost limb. The possbilities are endless.
Now I do need to be clear on one part, and that is that I am unlikely to benefit personally from this technology. The first patients are being selected and I can not be one of them due to the complexity of my body and medical hisotry. But, I get the next best thing. I get to work with the top doctors and have a voice in steering the way the work goes. It is a big respobility and yet one that just feels wonderful. To think that no one else will have to go through this pain and waiting whilst being unable to breathe.
And that really is about as much as I can say on it, as its all very confidential.
However it did mean that I was in London this weekend for a confrence, which went well.
I did have more to write, but I think I will come back and finish tomorrow, as my arms are not up to typing tonight. But yes, exciting times in the future are to be had.
Saturday, October 26, 2013
So enough of that.
This week is half term from school and so my niece has been down the last few days. We have been chilling out mostly (I am full of some sort of virus which has left me aching from too much coughing and an inability to move far away from my machinery.) Lots of cuddling up in bed with various films and tv shows on.
I also carved my first pumpkin of year. I love carving them and have done a couple each year for the last 4 years. My first this year, on request of my niece, is a minion.
I have been getting back into sketching a little, whilst I am sitting still. This is the last few days musings. I am thinking of putting it to canvas, but not sure who would appreciate it. I love the song rainbow connection (and generally anything muppet related.)
I took my niece home a little earlier. We were both still wrapped up in our onesies and as I was taking the car, we stayed in them. We sure did have a good giggle about driving down the road, her as tigger and I as eyeore, dancing away in the car to the music. Its moments like this that I will always treasure. I was just hoping that I didnt get pulled over for any reason. Wouldnt really want to get out of the car looking like that.