Where I am at.

Why is it, that I can always think of loads that I want to say and it sounds so eloquent in my head. Yet I sit down in front of a computer, and my mind draws a blank.

I have always held in my mind, that my breathing was going to get fixed. That one of the major surgeries would eventually be the one that worked. That perhaps I wouldnt know it at first, but that I would get better. I have always had in my mind, that things were going to get messy, that I something could go drastically wrong and so I have been prepared for that. To prepare those close to me, for the possibility of my story not having the happy ever after fairy tale ending. And yet, inside, I have held it my mind that I one day I would be able to breathe.

The fashion at the moment seems to be to make a bucket list and whilst I have things that I would like to do, rather than it being a bucket list, it has been a when I can breathe list. It contains all kinds, from the fun things like kite surfing and marathons, to the simple things like living independently, graduating and holding down a job, not to mention goals, such as climbing the local cathedral tower and getting to the top of Monument in London.

But as time progresses, the chances of this get smaller and smaller. Each major surgery, leaves me feeling weaker and less able to breathe. The restrictions grow, the treatments become more and the future begins to look a little darker.

Right now, I am having surgery every 3 weeks. Only smaller ops, laser and dilation, but still regular admissions and regular damage. I still have a trach in, but my peak flows, sit around 110-150 lpm. When at home, I run an average of 2 hours of nebulised medications (6 different ones twice a day) and extra when I need it. I am attached to a hot air humidifier for about 9 hours a day and take around 30 tablets in addtion to daily injections. But, its not enough to stop the deterioration. These days, I have an almost permanent stridor that makes me feel rather self conscious.

I go to theatre on a Tuesday, by the sundayI begin to feel the restriction again and by the time I next go, even simple movement around a room leaves me feeling out of it with major headaches.

Between that, I have regular courses of antibioitcs, both in tablets and IVs when needed. The problem with IVs at the moment, is that I have very poor venous access. This means that I have to stay in hospital whilst on IVs, so they can keep my access open. A course of IVs is usually 2-3 weeks, but I go to theatre every 3 weeks. It makes things complicated.

At present, I am taking a course of antibiotics via tablets, given them straight after theatre as well as a heap of extra physio and nebs, but by the time I am off the tablets for a week, my lungs begin to kick off once again. I cant put the IVs off for very much longer.

Right now, I am running very low on options. They cant keep taking me to theatre every 3 weeks, but the airway wont stay open on its own. At some point, the doctors will need to admit defeat.

I have faced my own mortality on a number of occasions and whilst I am not scared of death, I am petrfied of dying. I remember moments of sitting in hospital, gasping for every breath, fighting to get the air in and just feeling pure terror. Tears flowing freely as I begged for help, all of this in hospital settings, were help is on hand and you can still have faith that the doctors will be able to correct things. But to face this with the stark reality that there is no help coming, that the fighting for each breath, is the easy bit, because the alternative is not breathing and not existing. That is what scares me. I dont want my family to have to comfort me, I need to be strong for them, especially if the end were to draw near. It would be my final act, to go out brave, a fighter to the end they would say. But the fear grips me, It reminds me of all the previous times and pretty soon, the fear bubble ups and I feel it sink its teeth into me like a snake that wont let go until it wins.

And that is what sits in my mind, it what always sits in my mind. It is what has spurred me on through the big ops, given me the kick to keep going even when the odds are against me. Fear, like that feeling when you go over a hill and your stomach takes a few seconds to catch up. It grips you and takes you down with it. Leaving you nothing but a moany sulky brat, when you long to be the grateful brave warrior.

I guess that I just wanted to put that out there. I have nothing to fear but fear itself, but this fear is a great one and not something that I can see myself getting over before I need to.

Still here

I'm still home.
There is still a lot of hospital stuff going on.
Tuesday I had my stitches replaced,
Wednesday I had to go for blood tests.
Today I had chest clinic.
anf tomorrow is Liver transplant clinic in Leeds.

Things are tiring. Breathing is hard work. To the point that it any walking, be it flat or slow, leaves me gasping. Stairs are a complete nightmare. I go up them slow, yet it still takes me over 5 minutes to catch my breath at the top. My breathing is very noisey and a little embarssing. So admitedly I have been avoiding walking in public.

But Monday is back to London for a review and surgery. So hopefully I will get some answers. I am trying to stay positive. I mean, at one point I didnt think that I would ever get back out of hospital. Yet here I am sitting at home. Yet there is still that part of me that knows the signs, knows how tight things have gotten and knows the pain that has been there. But I remain hopeful. I dont think they could leave me like this for long, so hopefully a plan will be put together. I just hope that they listen to me and actully hear me. I tell them that breathing is a struggle, but they only see me when I have been sitting still, so I dont think they see the extent of it. Its just exhausting sometimes.

Next week, I will hopefully know more and then I can feel a little more settled. And this weekend? Well, I have my niece here all weekend, and my parents are away. Much cuddeling and fun is to be had. Not to mention lots of junk food and sugar. I need this to recharge before heading in for the next round.

Crippling

Its nights like these when I can feel myself becoming more and more miserable. I wouldnt say depressed per se, though I guess it probably is to a point. I still get enjoyment and such, but some nights, the lows can be crippling.

Breathing is getting harder. Every morning, I wake and my chest muscles are so sore, from lying in an odd position and having to literally suck the air into my lungs. Yet I am so exhausted, that I sleep through it. I do wake myself, several times a night, with the noise of crap blocking more of my airway.

Simply, walking from kitchen to living room, right now, takes me about 5 minutes rest to catch my breath. And sleeping, I average about 11 hours a night and then days like today, I ended up napping for another 4 hours.

I know things could be so much worse. Perhaps that is why I only feel miserable. I am thankful for what I have. But its still an odd feeling. People I went to school with are celebrating things like their childrens 10th Birthday. Everyone I knew or know seem to be getting married, buying houses and having babies. And I know that isnt the be all and end all, but I mean come on, I still live with my parents. I havnt had a serious relationship since I was 16. The differences are just insane. I guess that is why I have trouble relating with people and making conversation. Ask me anything medical, and I can give you a good answer. But life experience? basic milestones? I have no idea. Sometimes that difference just seems a lot. Like, a different planet type of lot.

Mostly I just ignore it best I can. But, sometimes, when there is no sign of things changing, it just becomes like a weight. And that, is really all I have to say tonight.

The 9 1/2 week hospital saga

Wow a whole month between posts.

There are a lot of reasons for it really. I mean I doubt anyone reads here, but it was always more for me anyway. Partly that I have so much to catch up with that it became a tad overwhelming. But also because, I used to write last thing of a night, right before I went to sleep, to allow all the thoughts to tumble from my mind. But I am back on my nebs and so by the time I run them, my hands shake to much to type.

So I am writing before I run them. I am going to do a quick run down of hospital, though my orginal post is half finshed, if anyone wants to read it, I can still publish it, but as I say, this place is mostly for me these days so I still have it in draft.

Hospital was tough. I was finally discharged last week, making my stay just short of 10 weeks. It was one of the toughest periods of my life. There were times when I was too weak or breathless to be able to even shower or make it to the bathroom easily. There were times when I threw up so much that I thought my stomach was leaving my body. There were times when I didnt think I would leave the hospital ever again. Those I admit where some of my most scary days. When breathing becomes such a chore that you wonder how much longer you can manage it unassisted. There were times when I pushed myself so much, that I had to sit on the floor for almost an hour to recover, then almost couldnt get back up off the floor. When I pushed so hard that I was in too much pain to walk for almost a week. There were days when I wondered if I should call my parents to let them come visit before time might run to late. There were tears and fights, but also joy and pride. It was one of the most emotional 10 weeks of my life and its not over yet.

Waking up from surgery, I expected to hurt, but I didnt expect to not be able to lift my left arm. The IV line had tissued during surgery (a common theme these days) nobody had noticed the line for some time and so my arm had swelled to 4 times its normal size. Given that my leg had been split from waist to knee and I couldnt move my neck, having my arm out of use made movement very tough indeed.

But I got myself moving, quicker than they had anticipated but I wanted the catheter and feeding tube out and I wanted to get as much movement back in my leg after them taking muscle out of it as well as skin grafts and finding the cartilage. I did all that and all was well.

But then my neck swelled, my oxygen sats dropped to 82% which for me is a huge thing for me and I looked like crap. I was put on 4 differnt types of antibiotics, but showed no sign of improvement. After late night draining of my neck, at 11pm on a saturday night, results came back that I had a bad hospital accquired infection in all of the areas that had been operated on. There were only 2 antibiotics that would get rid of it and I was allergic to one lot of them. I was put in isolation and begun them. The first 4 days were horrific. I couldnt even keep water down. Everything hurt from throwing up and the lsightest movement had me retching again. I was on IV fluids and injections for the nausea. But they began to worry about me not absorbing my meds as they wouldnt stay down either. At last after almost 5 days, my system began to adjust and the nausea eased off. Over the next 3 weeks, I had to cough all the infected material out, as the swelling slowly began to go down.

Then there were problems with the trachesotomy that they put in in surgery. It was butted into the back wall of my trachea, so not only could I not breathe through it, but it was wearing a hole in my trachea. After a few attempts at fixing it, it was taken out.

That night, I coughed out 3 pieces of cartilage that they had planted in my neck. I cough a lot anyway, jous of crappy lungs, but brining out the cartilage, was something else. The drs face was priceless, when I walked to the Drs room, knocked and asked to see him for a minute and showed him. You could see the cogs whirlling on what to do next, and checking I was breathing ok. Lots of treatments later, where I had to run almost constant nebs all night long, and my coughing eventually settled. For a while the Dr sat at the desk outside my room. Everytime I coughed, I could see him watching me, waiting just incase. It was both scary and reassuring at the same time. I owe a lot tot hat Dr, for although I didnt freak out, it felt like a team work thing. I didnt freak, because I trusted him. The Dr on nights the following week, would have spontatniously combusted if presented with the same scanrio and I dont think I would have felt as safe. Anyway, my surgeon was phoned at home and informed and such.

The following night, I coughed out some more cartilage, meaning at least 4 out of 7 pieces were now outside my body (though I think it was more so 5 or 6).Things were not looking as hopeful has they had a week earlier.

I had been fitted with a PICC line, that ran up my left arm to my heart for IV meds. A week after the cartilage insadence, just when things were starting to calm down, my arm began to swell. A scan revealed I had a DVT. If that isnt bad enough, I am allergic to the meds used to treat blood clots. I was started on new meds that nobody had heard of before and the line was removed.

It was noted that one of my eyelids had dropped and that my pupils were differnt sizes. I was diagnosed with Horners Syndrome, caused by damage to one of the nerves in my neck.

One morning, I somehow ended up getting my IV line flushed with salbutamol, a med that is usually only given as a neb. My heart rate spiked to 210 and I spent the following 24 hours on a heart monitor.

But, worst of all, out of all of that, was I developed Surgical emphasisma. Now I am no stranger to that, it is where air is able to leak between the layers of tissue in the skin. It causes swelling in the skin, that when touched crackles almost like rice crispies. I have had it before, but this was serve. It ran from my waist to above my ears. It swelled one of my eyes closed. I wasnt allowed to lie down and it was very painful. I had all my painkillers increased and was put back on the ketamine.

I was really begining to struggle to breathe and so, while I was awake, on the ward, one morning, I had a mini trach inserted into my neck. The following morning it was switched for a regular trach. Never have I had them put in while awake. It was quite the experience.

Surgery had to be held off because of the surgical emphasima. Breathing was still hard and I found my days filled with sitting still, whilst on oxygen and running so many nebs that I dont know how my lungs didnt swim out themselves.

Eventually I went back to theatre and things mainly looked swollen. But the trach was secured and for now, I breathe through a 7mm hole in my neck, that gets clogged because of my chest issues. Things are not very comforatable and we have no idea if the surgery will work at all. My orginal trachea had to be cut open with a bone saw, which is very unusual, the first time my surgeon has ever had to do it. So it was a mess to begin with. So time will tell.

I also developed a Staph infection in my blood system. requiring more IVs. This was discovered the day the Drs were discharging me. It is a nasty infection that can wreck the heart muscles in a mater of hours. So I had lots of heart scans. I was, disapointed at not being discharged as I had become increasingly home sick. I had told my parents not to visit as i thought I was getting out. When I didnt, the days began to drag, with no visits to break them up. In fact the last couple of days, I spent trying to hide my tears as I just wanted to get home.

Mixed in with all of the above, were fights with nurses who wouldnt listen, meals out and take aways delivered to the ward, good friends visiting and making friends with some of the nurses, I gained the trust of a Dr who I never thought I would, he even talks to me now like I am human. 9 I have had issues with him in the past) and other Drs, who gave me hope again and made me believe, if only for there shifts, that things could still get better, that i could make something of myself again, once my breathing was fixed and to him I will always be grateful, he lit a torch, in the darkness.


I saw some amazing sunrises.

Had the best picnics and time away from being a patient as possible.

And confirmed what I already knew. That I am under the best possible surgeon and the best possible team. Even if this never works, I will be forever grateful and in debt to them for there amazing skills, compassion and understanding. Not to mention their ability to not scream in frustration at the 10pm ward call they would get most nights for me, to fix broken cannulas, or if I had thrown another temperature, or coughed out some more cartilage. I am also thankful to the people who visited me and kept me sane, the ones that sent me gifts and those who well wishes I received via snail mail or online. I am a very lucky person.

Needed - Balance

I have said it way to much but still say it now. Nights like tonight, I need to write. I need to remember, I need the emotions. Yet I doubt I can do any justice to this. The subject is to big and I am too exhausted.

But days like today, things change and change a lot. They give me such a glimpse to the future and now always in a good way.

Today, my parents visited, I wasnt expecting it, they just turned up. I cant say how I felt. I knew that I looked rough and that it would be a shock in a way for them to see how much has changed in the last week or so since I last saw them.

What I hadnt prepared for though, was how much of a change I would see in myself.

I have done long term hosptial stays and I know they have an effect on you, but you can work on it once again when you get out of hospital. But this time, I couldnt keep up with a visit. My body was not physically strong enough to keep up with just sitting.

Simple things, I am lying on my bed quite comfy, no real stress. But I still had to have my nebs running all the time else my chest felt too tight to get the air in. I was mostly just listening to the conversation happening around me but rapidly finding out that in fact, even had I wanted to join in more I couldnt.

If i planned agead, I can control my breathing to get one full sentence out at a time followed by a couple of quick breathes and a few more words. But this was not susuataiable. To hold conversatin, became a chore or breaking things down. 4 words seemed to be my limit. So 4 words followed by 2 big breathes and 4 more words 2 more breathes 4 more words. And so on till I got my sentence out. You can imagine how long anything took to come out.

And if dad didnt get what I was saying or interupted me, I wanted to throw something at him.

Mum could see how hard I was finding things and took pity on me. Taking themselves off to do there own things and come back later. I feel guilty that they have traveled so far to come see me, only to find I cant keep up with them. Its not a nice experince.

Bless her though, she goes into full Mum survival mode for me. Making me nice food, tidying my drawer up, sorting my washing. Anything she can do to lessen the load on me.

Part of me wants to say, its not meant to be this way, not this quick.
But then, perhaps this is ideal. Maybe we both needed the harsh jolt of reality to show where we are up to.

Dad didnt like the idea of leaving me tonight. He was suitably anxious at how hard I was finding it just being right now. But as mum explained to him, it was the effort of me being there that was causing me such issues. If they hadnt been there, then I would have been resting my muscles instead of trying to force them to breathe and work.

Time will tell and tomorrow is a new day and all that jazz. But today has been a steep learning curve for all involved. One that shows just how close to the edge i am wandering right now. One wrong slip, one lose pebble and it could all come down on top of me.

Change is in the air.

I have had 3 amazing months.
Months filled with everything I could have wanted and more.
Love, so much love.
Happiness
Achievements
Old friends, new friends.
Holidays abroad and holidays in the UK.
And most of all, very few hospital stays.

But, I can feel it in my gut, things are about to change.
I've lost my stamina.
In the past, I have picked up pretty well after surgery.
I know the rules, I know to keep moving, I know to breathe to deep.
But this time is different.
This time recovery has been slow.
I expected it to be slow to be honest, its one of the biggest ops I have had.
But its not that.
Its not even the complications.

On top of the usual surgical recovery, I have developed a new condition.
costochondritis. Basically inflammation of the cartilage in my rib cage.
It makes sense, the trouble is, nobody know if it will be permant or temporary.
The main issue is pain, getting comfortable at night is a nightmare.
But it causes other symptoms. Odd symptoms you wouldnt expect.
It makes one of my boobs sore, it sticks out and it aches and pulls.
But its not just that.

As I say, I am not being unappreciative. I have loved the last 3 months.
But change is in the air.

After spending a night in A&E unable to breathe, I was started on anitbiotics.
My chest is a mess. My doctor says its to be expected, spending so much time under anesthtic.
I have been started on steroids and a second course of antibiotics
But that is just the start.
As soon as a bed comes available, I am being admitted for a course of IVs
Hopefully it will help.

But the doctor did admit that I am now colonised psuedomonas and possibly staph.
Basically means, they will always live in my lungs now.
And flair up whenever they decide to.

But again its not that.
My bladder is playing up.
It took 3 courses of antibiotics to clear the infection
and I'm still not sure if it gone.
I cough a lot and at the minute I leak easy.
Not good when your lying in bed hooked up to machines.

The coughing has other side effects.
prolapses and as I mentioned bladder issues.
But I cant bear the thought of getting them checked over.
The thought of another clinic.
Another doctor.
I cant bear the thought of having them confirm what I already know.
Or to tell me of more problems.
I feel I am falling apart.

But once again, its not even that.
I keep mentioning 3 months.
I do look back and smile.
But there is more to 3 months.
My last trach lasted 3 months before the scar tissue built up.
And I have feeling this one is going to be the same.
I am able to talk more without covering the hole.
This means it my airway is blocking below the tube again.

Time is getting to be a problem again.
I have another tube waiting somewhere in the hospital for me.
That will give me another 3 months.
That should take me to the next surgery.
But what if it dosnt work.
What if the cartilage dosnt grow.
what if dies before I even get to my next appointment.

I have never been a whatif type of person.
Yet now I feel myself getting scared.
Scared of what I dont know.
Perhaps what is next to go wrong.
Perhaps, I am just tired.
Tired of everything.
Tired of things going wrong.
Just tired.

Its no one thing, it a hundred small things all rolled into one.
And there is nothing I can do to stop any single one of them.
Every answer just out of reach.
Every solution short of one step.

I have come so far
and I will ever be thankful for everyone who has gotten me to this point.
Be it friends, family, doctors, nurses, donors.
But the truth is, right now, the future grows less clear.
I can see myself getting weaker.
the last few weeks are taking their toll.
Maybe sleep will help.
But I am changing.
Life is changing.
evolving
change is in the air.
maybe good change
maybe bad change
But any change, is always accompanied with drawbacks and oppertunites.

Perhaps sleep will numb my mind to stillness tonight.
Perhaps I shall sleep more than a few unbroken hours.

Breathing is totally under rated.

I feel amazing! I just wanted to put that out there really.

I am home. It went as expected, in that I was discharged from one ward whilst I continue to wait for a bed on another ward.

But in theatre, they basically moved the crap that was blocking my airway. My airway was still a little tight and so the new trach that we wanted to get in, wouldnt go. They knocked me out in the end, to force the muscles in my neck to relax and so that they could force the tube in. Its a little on the painful side, but the good bit, being, that the tube is in and its a whole 4mm longer than my other tube. This means that it bypasses where the scaring keeps building up. Dont get me wrong, I am not under any illusions that it will last forever, but if it holds out like the last one, I should get at least 4 months before it begins to tighten. And its saturday now, I went to theatre on Wednesday and the pain is lessening already. I have only needed 2 doses of morphine today so yay.

Its silly how you adjust though. To run up the stairs for something, get the top and think, hmm I am still breathing. To sleep of a night and wake up feeling like I have slept, not to mention, not waking every hour to unblock my airway. Its like I am suddenly a million times better.

Which now means that running through my head, is the question, should I go away? On one hand it makes sense to, I can breathe so well at present and I still really want to go.

But on the flip side, I still keep getting sick. My body is still trying to kick up a fuss about something and coughing fits still involve me losing my stomach contents.

I think mum shed the best light on it earlier. She said to me, last year when you went away on your own, you were 100% sure you could do it, you were well and everything was staying within set limits. This year, there is doubt and part of me wonders if I could manage it all on my own. Not to mention, would I enjoy it, if I was constantly monitoring the situation. I know she is right, that it is the best option to leave it for now. But part of me still whispers, make the days count.

I have a good feeling about the next op, so perhaps, I can say, well if I wait, by next year I may be able to do it, with fixed breathing. Plus, it kinda scared me seeing my inability to cope with being ill last week. I knew I needed treatment, but the mere mention of going through A&E and the possibility of spending time on the assement unit in my big hospital, was enough to reduce me to tears. I am not normally like that. I normally grin and bear things and make the most and get on, not cry and want to scream.

So, the plan now, to try and get these damn IVs sorted and see if that stops the sickness and coughing. As soon as they are done, I will book myself into London for a rib cartilage harvest. I need the IVs first really. I know coughing becomes difficult and painful once they have been playing with my ribs and so, it would not be a good idea to go through that, whilst my lungs are still full of crud. So Monday, if no phone call, I may need to get on the phone and kick some butt again.

ohohoh, but now, I might not need any more hospital! I totally bought my own surgeon! Complete with a huge syringe and an xray. Im sure he can give me some new bricks or something.

London

Alas, I never did get up to an update last week.

So yeh, last week I went to clinic in London with my surgeon. It started off stressful. I listened to the traffic reports before leaving and I know the route I was taking, I had traveled a couple of weeks before with no traffic. There were no road works and so I set off with plenty of time, but expecting a smooth journey.

It wasnt smooth. The area I had to travel to the station at, involves going over a bridge, you know that pretty green structure on the Cathedral City adverts? Yeh, its not a nice bridge at all. It is a main area that gets a lot of traffic. It is also an area that goes suddenly from 5 lanes to 2 lanes and within a few meters of getting down to 2 lanes, you have to be in the correct lane for your destatntion. So it is often busy and I have previsouly spent more than 3 hours sitting in traffic waiting to get across it. However, as I say, I had checked, it was empty.

By the time I got to the bridge, it was no longer empty. The radio were doing all the travel reports saying how unusual it was for the traffic.I had also had a slight mix up with the times, thinking that the time I had in my mind, was the time it left the city, not the time it left the station I was going to. So all in told, by the time I got to the station and parked, I had missed the train.

My ticket was valid on other trains, but it was an hour wait for the next one. So an hour in the station and 2 hours on the train, had my anxiety levels prickling. I dashed getting across London and was pretty impressed at how quick I managed to do it.

So I got into clinic, in time to see the surgeon before he dashed off, though I only got 10 minutes.

From what we managed to discover in that 10 minutes, is that, my upper airway sounds awful, but he wants to investigate, but the trach tube also seems to be digging into the side of my airway. So to put it simply, I am back in hospital tomorrow, in order for him to have a poke around and see if he is able to move the tube about a bit and to come up with a course of action.

So tomorrow, it is back to London, all set for surgery on Tuesday. fun eh.

blah

Hopefully a quick update as I dont really have much to update.

A quick backtrack as my video was awful. Last week I ended up back in surgery, less than a week after my last one. Turns out the area of trachea above my trach has now collapsed. This means that I have once again had to ditch the speaking valve, making speaking a lot harder. You would be surprised at the amount of times you want to talk, when your hands are tied. To speak without a speaking valve, I have to block the hole on the front of my trach, while I speak, then uncover it to breathe in again. This means, when your standing washing dishes, and someone asks you something, you can answer. Or if you touch something hot and shout ouch, the sound dosnt come out. It gets frustrating. Although I am once again having some issues below the trach, so often I can get short sentences out without covering it. As they are short sentences, I tend to sound like that kid of the Malcom in the middle show.

Anyway. I am seeing my surgeon this week to discuss where we are up to and where we go from here. I spoke earestly in a email to him. There is a minimum of 2 years until the research for the surgery that may help me will be availble. Right now, with both ends of my trachea collapsing inwards, it would be a miracle at this rate if I make it to the 1 year mark, never mind the 2 year. I am getting tired, tired of surgery, tired of pain, tired of being tired. I think perhaps its time to review where we go now.

Half the time these days, the thought of leaving the house, makes me want to cry at the effort it takes. I have more bad nights than I do good nights. And today, virtually every breath I have taken has made a squeaking sound. A squeaking sound, like a squeaking toy, is from the air trying to get through a small gap. My lungs take twice as much effort to pull that breath in and out. It is exhausting.

And I know the lungs cant hurt as they have no nerve in them, but I am getting a heck of a lot of pain along the scar site from my lung surgery. To the point, where today, I even asked mum to give me some physio on that side to help it.

I have a feeling that this appointment, is probably going to be one of the hardest appointments I have had to face.

In other news, well not really other as its on the same tracks, but the world leading surgeon for tracheal transplants, the one who is supposed to have been making leaps and bounds and fixing my type of issues, was arrested last week for fraud. So yup, thats going to suck. Though, it does now mean, that I am definitely under the worlds leading surgeon for tracheal surgery.

I am doing everything right, I am in the best place and I have the best people caring for me. Other than that, lets just play on luck.

I have my niece here tonight, so some quality time and cuddles might be a good option.

gotta give

Something has to give, something has to change. And it has to change soon.

My last post made little sense. And this post is even harder.

Everyday my breathing seems to be getting tighter. Where at one point, I used to feel breathless, now, I feel the trapped, I feel it trying to get out, i feel it stuck. My body crying, screaming for oxygen, my lungs pumping it and my throat unable to keep up. The pressure builds, the effort increases, things go fuzzy.

I know I complain lots about sleeping too much, but this is beyond anything I have had before. I can barley keep my eyes open. Long sleep, unable to wake. Inability to read anything as my eyes keep going crossed trying to stay open. Right now, I type with my eyes shut, jerking awake suddenly every sentence or so.

But sleep is not as easy as it seems either. Everytime I sleep, I drift off, begin to relax, begin to rest, before suddenly being ripped back into reality my lungs once again complaining, forcing the air through the smallest of gaps. Shift my tube, make the gap slightly bigger and I can sleep again. Sleep until the next time. Hourly on average. Right through the nights.

When moving my tube brings me to tears, then I no know it is time to top up the painkillers. I hate them too. Yes they make you more sleepy, but the pain is extrodanariy. Like somebody has a knife to my throat. The slightest movement.

A world of painkillers and sleep. But its not enough, its not comforting. What if's play through my mind.

So many symptoms. Shake head rapidly to force eyes to focus. Everything a struggle. Conversation, impossible, movement exhausting. I walked 15 steps earlier, from kitchen to living room. Over 5 minutes to get my breathe back and another 20 mins to get the energy. Cant be bothered with food, to much effort.

Sleep calls once again, only had 19 hours to day.

I need help. I know I need help. Beyond anything I have done before. Is this what dying feels like? Is this what the end will eventually be like? Pity from people. Doctors, giving you everything you ask for. Parents making you sit still. Looks of concern. Skin so pale.

I need that help and I need it soon. I need it tomorrow, not later. But off who.
Main surgeon says nothing he can do, says speak to home team. Home team say, nothing they can do, speak to main surgeon. Like a child, go ask your mum, go ask your dad. I dont have the energy to play, I dont have the ability to be elquont. I have reached out, I have asked for help. I have hanfef control over.

Time to drift off into nothingness. Tomorrow will see a change one way other. Tomorrow help will come.
I hope it does anyway, this is getting beyond my ability to handle small quantaties of fear.

Tomorrow or bust!
Something has to give.
Giving into inability to see.
Cant make out letters.
So good night.
And thank you.
some rest please now.

nonsense.

I have been staring at the screen once again for the last 20 minutes, contemplating what to write.
How to up date, how to sumerise where I am up to.
But in truth, right now I dont know where I am.

What I do know, is that its  not even 10pm here and I am tucked up in bed. I have not been dressed all day and yet I feel worn out.

My last addmission showed me a lot. Where I thought I had strength, I dont. I lack the ability to stick up for myself and that leaves me unable to fight in the areas I need most right now.

Right now, I need to cling to people, I need people around me, to tell me things will be alright, to see through the facade and know that perhaps the unspoken is bigger than first thought.

Right now, each day is a battle. Although I am out of hospital at the minute, my health is still not complient.

In round up, I went to clinic last week struggling to breathe. Clinic addmitted me as they didnt know if it was infection in my throat or scar tissue. If it is infection, that is easy to clear with meds. If it is scar tissue, that becomes more complicated as it means that it will keep building and keep needing to be removed, until a point is reached when we cant keep up with removing it. Then things get more complex.

After a week of meds, the conclusion was drawn that, it is infection, but the infection is building up as I can not get the breathe to clear it due to the scar tissue. The scar tissue was removed and I was allowed to go home.

Upon getting home, I developed this extreme anxiety, that had no known cause. I was still on my pain meds and struggling to keep my eyes open, yet, I didnt want to go to sleep, I was to scared to sleep. I stayed awake until about 2am, but did eventually drift off despite my best efforts to stay awake.

That night, every half hour, I would wake, gasping for breathe, barley able to get the oxygen flowing through my lungs. I kept having to change position in hopes that my airway would give me some free flow. I gave up at 7am and got up.

Later that date, I had clinic with my chest consultant. He isnt happy with my chest or how much I am suffering with it. He basically said, you have 3 big seperate problems, but put the 3 together and you are in a right mess. Crappy lungs, immunsupressed  and a disagreeing trachea.

He wants to admit me. He wants to blast my lungs with some more drugs, get some physio input and monitor me a little more. He said he cant touch the trachea area, but wants to work as best as he can with it as he can see how much it is tiring me.

So I had to agree to be admitted for some more IVs, which I am now waiting for. I also need to keep my surgeon updated on how things are. The good news with this, is that my chest guy has agreed finally to have a port fitted in my chest. This is such a weight off my mind. Right now, IV meds have to be put through a needle fitted in my arms or legs. The needles are very difficult to be put in me now and most I have to wait for anestists to come fit them. Having a port, will mean no more needles, it will be mean a safe access point in emergency, it will mean not having to miss med doses when a needle can not be sited. It also means, that eventually I will be able to run the IV meds from home myself, and therefore avoiding hospital addmissions.

Huge step forward.

But right now, I can barley stay awake in the day, yet, unable to sleep of a night as my breathing likes to keep me awake. My lungs feel like they are on fire and I generally feel rough.

Now here is the hopefull part. Over the next week or so, things should improve. With a bit of luck, my throat issues at the minute, will just be swelling, it wont be scar tissue. Antibiotics will clear my lungs out and give me some energy again.

The thing I want to avoid most, is going to London next week. I need my throat to improve, as if i am still struggling I could well end up back in London, which I dont think my mind is up to keeping up with right now.

Half of this dosnt make sense. I have lost my focus writing. I wont delete it right now, this is just the stage of my mind wandering. I will however try to rephrase tomorrow perhaps.

I just need a sign, something to tell me that I dont need to go to London again, as that is my worst thought right now and I would rather stay home and recuperate.

Oh and I am slowly working on catching up with blogs, but I have difficulty keeping my eyes open, and so if your blog has more than 3 lines of text, then it may take me a little while longer.

urgh

Well, I am still not breathing right, its getting kind of annoying now.
I am telling myself that it is nothing to worry about, I have been through this before and it does clear. I am happy enough with that.

The hard part is that, it has never been this server or this long lasting. Normally my peak flow drops to about 120 minimum for maybe 3 days. Right now, it has been about 5 days and my peak flow currently sits at a rather scary 80 l/m. Its frustrating as even the most simple tasks leave me panting and I am unable to finish my sentences in one breath. Its never been this low and I know I am only dealing with it, because my body has adjusted to crappy oxygen levels. All I seem to be doing is taking pain killers and either sleeping or struggling to stay awake.

I have to have a backup plan. My plan is, if things have not dramtically improved by Tuesday, then I will contact my surgeon and ask him for an emergency review on the wednesday.

I need something in my life other than illness and hospital. And I am still searching for something. But this latest flare up, is making my search that much harder.

Time, time is all I need at this point.

Structure

I dont know where I go to from here, I am lacking structure.

For as long as I remember, I have always had something in life to aim for, or at least something to build around.
There has been college and uni which became such a big aim in my life. Then hospital took over and for a long time, it was making it to the next appointment, surgery, admission. But now, hospital is on a back burner. I told my surgeon I didnt want admitting last time I saw him, there is nothing he can do to improve things, that is worth going through the whole surgical experience for, I accept that this is now a waiting game.

But now, I have nothing to plan around and although its good that that means no hospital, it is bad in that I need to get back with the living.

I am alive and that is right where I should be. I need to live and to live you have to do. I have spent the summer existing and that has been good, I have enjoyed pottering around, playing with my craft stuff, spending time with my niece and watch rubbish tv. But I need more and I am not sure what that is. I need something to show for my time, I need human contact.

Watch this space I guess on that one. Exhausted yet wanting to do more, we shall see how that plays out.

On other news, today was a hard one. A sudden coughing fit in the middle of a shop, gasping, spluttering, tears streaming down my face. Afterwards the pain and exhaustion kicks in, in a sudden wave. Shoulders and back ache from forcing air into my lungs and all I want to do is curl up and sleep.

Today marks the start of another uncomfortable trachea phase. My tube sticks out more than it should, I cough more, gasp more, experience more pain. My peak flows barely hit 140 and I begin to struggle with full sentences. But, I can keep my calm, pace myself, for I know that it will pass. That in about 3 days, I will spend the day coughing up blood, my tubes will clog and my heart rate will jump. But then, the pain will settle, my tube will slide back into proper place and my breathing will settle with my peak flows jumping to around 220 again.

This too shall pass and that is enough to bring me through.

Ha, its a little ironic, I had to sit through a driving/speed course yesterday, but I couldnt drive myself as I had high doses of opiates in my system. Trying to get out at the end and not let all the other drivers see I wasnt driving was fun.

Time is a wonderful enemy

I should probably be sleeping now, but I still feel the need to write.
I dont know where to start or what I want to say, so bear with me, this will be long and probably not much sense.

On tuesday I got out of hospital. I was meant to spend the entire time on IVs, but by Sunday, my veins had gone again and after many failed attempts to reinsert them, they gave up and switched me to orals. My infection markers where coming down yet I still felt rough. I was discharged Tuesday, still on Orals, but as I put it to them, everything they were doing in the hospital, I can do at home, so I saw no point in staying in. Its now Saturday and I feel the same as I did the day I went in. My guess, is my infection is worse now than it was then and my trachea keeps blocking up. But truth be told there is little they can do. So Tuesday afternoon I made the 3 hour journey home.

Thursday morning, I then made the 3 hour journey back to London. I had been asked to attend a research meeting. The meeting was with the professor who is fronting the research and surgery into the tracheal transplant. He knows about the website I have been building for airway information and if very encouraging for it. He wants as much input as he can from myself and a fellow patient, with aims of getting other patients invovled.

Whilst in London, I spent some time with a friend and we saw, the show, the lion, the witch and the wardrobe, which was truly a wonderful production and a good night overall.

The meeting was fascinating. He is a highly educated professor and his ideas and research are amazing. The possibilities that it paves the way for in the future are endless. To think of a world, where people could go through transplant without the fear of rejection, without medication and all the problems they cause. The amount of lives it could save is endless. And to think that in 20 years time, people with airway problems like mine, would come in for one op and be fixed with no more problems.

The meeting was also very gratfying. That these professionals want my view on things, that they like the work I have done and value my opinion. I like that I have given them things to think about and ideas that they may not have had before. Again the future possibilities. In future times, it could be a job that combined many of my skills in one go. Nursing, medicine, computers, design. The scope for progress is huge and the thought that lil old me could be part of such a huge amazing thing, is truly mind blowing.

But there is always a flip side to these things. I now know a lot more about the research, where it is up to and what it entails. And in short, its a long way off. They are applying for grants now, from the time they get the grant, to the time patients will begin benefiting from treatment, is a minimum of 18 months, but as research goes, probably a lot longer.

In all respects, 2 years isnt that long, it will probably fly by. But when I think about the last 2 years, they have been very long, very hard years and they have taken a huge toll on myself, my family and my friends. And then I think of the last month. The last month has been harder still. They cant keep my body free of infection. The only way I can think to give a general idea, is for people to think back to the last time they were sick, a time when they felt sick enough to go to a doctor and be put on medication to cure it. Well, that is how I feel, but its not a temporary thing, its living with the thought that, things are going to carry on like this for the forseable future.

Infection drains you, it puts your body into fight mode. When you awake in the morning the first thing you think about is pain, when you go to sleep, its the last thing on your mind, be it lungs, joints or neck. Through the day, you feel permantly tired. I could and have last week, slept for 20 hours a day, with no problem. Even showering becomes a dreaded task as it just takes too much energy. And the other problem with infection, is that it always gets worse. The meds become less effective, the symptoms get harder, it just takes so much out of you.

Where is this going. I honestly, dont think that I can make 2 years like this. I feel like I have run a marathon and not the energy to go on. Truthfully I dont want to die. I want to be independant, I want to see my niece finish school and go to prom, to college, to uni. And every time I look at her this weekend, I just want to break down, the thought of not seeing her reach those stages is hard. I love her so much it hurts sometimes.

I had contact with my surgeon today, on a Saturday and everything, he really does go above and beyond his duty, I am so thankful for him, he is one of the good guys. I have an appointment with him at the end of the month and, in his words, we are going to discuss all the possbilities for keeping things comfortable. I guess then, we shall decide how hard to fight from now on in.

And between now and then, I am going to enjoy all the hugs I can get and have all the fun I can mange. And I will savor every moment of it, because every moment is prescious and everyone is special.

Fear

I havnt posted much recently. I guess I have been getting on with life.
Not to mention trying not to complain as much. I have things pretty good, I know I do and believe me I am thankful for that.

But then, there are times, when I know how lucky I am, but I also know something isnt right. But I worry about seeking help, incase I am wrong, that things are fine and I am over reacting. I know I have written about this feeling before, but at time like now, the feeling gets so overwhelming. I know its ridclous and that doctors trust me, but learning to trust myself is a whole differnt level.

Right now, I am on antibiotics again, as I have 2 sets of infection in my trachea/lungs. Staphylococcus aureus and Streptococcus. But right now, breathing is tough. It feels like I have something stuck in my throat, other than the obvious metal tube through which I am breathing. This means, my breathing is hard, restricted and noiesy. But here is where it confuses me, I can kinda breathe around it, as so to keep the noise down, but sometimes, I cant and thats when it gets scary.

The video, is more for my record, but you get the idea. Its just regular breathing.

So, I have clinic on wednesday. And one part of me says please let it be nothing as I dont want any anything else to go wrong, while the other part of me says, I hope I am not exagerating and that there is a genuine problem. While the other part of me that comes out when things get scary, says, please admit whilst I am down there and sort this out to stop it being scary.

I think in conclusion, that we can see that i get scared easy. Im scared of my own body and that sucks. But deep down, I dont want to show my fear, and so I only want to mention genuine problems.

So this is me, addmitting, that the world can be a scary place and that my mind is a bit of a mess at the minute, but I have not given up.

life? nah.

Hello Blog.

I havnt posted for a while. oh my, I almost have a life.
But alas, normal function will now continue in my lifeless life.

Last week, I had clinic with my surgeon, which was kinda odd as I never go to just clinic, its too far to travel. But they wanted me, so I went. After some sulking because I wouldnt sit in the 'patients chair' (They always do mean things to you when you sit in that chair, like sticking cameras in places where there shouldnt be cameras ha.) He looked at my trach and said that, that dosnt look very good. Then he put his scope down for a better look. I heard him groan a little and then he stood for a few seconds glazing at me with that look that says, i have absloutly no idea what to do here. (I hate that look by the way)

So, it turns out, given that it was only 2 weeks, I had a heck of a lot of scar tissue already in my throat, more than he was expecting. A new plan was formed, in which I have a few new trach tubes and I am to change them myself frequently. The aim of this, is to take the pressure off the areas where it is scaring and allow it to heal. The complication of this, is that, it may well scar more, preventing me from putting the old tube back in.

He sent some swabs off for cultures and I left him mutering something about speaking to the professor to try and hurry some treatment options up. Basically put, my trachea sucks and the trach that was meant to mean no surgery for a while, is in fact causing even more scar tissue to appear.

But, I am still here, though feeling rather rather crappy in all earnest. Pretty sure my chest or trachea is growing some nice little bugs, that are trying to attack my body. This means that as well as my trachea playing up at the minute, so are my lungs and my stomach. And there is nothing I can do about it right now.

So as i was in London, I stayed down there for a days and had some social time with a friend. It was good, watching lots of films, going the cinema, eating out, shopping, drinking cocktails, that kind of thing. And although I got some might evil looks whenever I stopped to cough my lungs out, it went pretty good. Though, I did learn, that if you squish on to a tube train at peak hour and then proceede to have a coughing fit, most people will step back and you get a bit of space of around you instead of being squished. Though, I am unsure as yet, if it is a worthwhile trade, having that space, for the evil glares you get.

But right now, its bed time, so Im off to sleep.

Win some, lose some

Finally had clinic today with the results of my sleep study.
It showed some mild problems, but the docs dont want to act on it at the minute, due to waiting on more surgery. So yay for no apnea diagnosis.

Chest docs are at a loss to what to do. Any meds they want to try, I already seem to be on, but the crap on my chest is still far to thick. The longer this trach is in, the more issue I am having. Im coughing more, changing tubes more often and most nights waking with a tube full of blood. But, I am still breathing better than I was. Today, I made the walk to the hospital all in one go, no stops and still pretty much able to give my own name in at the desk. This is hugely better than I was. Its been about 2 years since I have been able to do it one go so yay for progress.

Unfortunly, waking up is getting harder again. I am still pushing myself to be up and moving by 10, but it is getting harder. Though, I have mostly cut out the afternoon naps.

Today, I got a load of stuff done for the solicitors which is something I have been putting off for over a month so again yay for progress. And this afternoon, I made an easter egg for my niece. It is a galaxy and oreo easter egg, and hidden inside the egg are chocolate covered oreos. (We have an orea thing going on between ha) It weighs a ton, so I think perhaps I made the shell a bit to thick, but for a first easter egg, i dont think it is bad. Hopefully she will love it.

She is coming down tomorrow, with her new blue cast as she has broken her arm, again! But not going to see her over easter, so getting her this weekend instead.

So yep, yay for progess, aww for annoyance.

Reality sinks in

Today, my heart is heavy.
I want to say, it has been one of those days that I never want to do again.
Of course, I have said that in the past and can now clearly say, that it dosnt get easier.

Today, I moved all my trach stuff back into my room.
This is when the reality sinks in. When the stack of machines at my bed sides grows yet again.
My nebuliser, my humdifer and my suction.
Each machine with its own prupose of keeping me well.
On top of this, the boxes of dressings, tubes, ties, valves, creams, caps and wipes.
My room once again no longer resembles a bed room, but more so a clinical area.

I know there must be a reason for this journey
and I hope that this isnt the end.
I have met some amazing people and achieved so much.

But tonight, as the tears quietly drip down my cheek I am allowing myself to be sad.
I am allowing myself to mourn the life I had hoped to have by now.
Tomorrow is a new day and new days bring new oppertunities.

One day at a time.

Life is changing, evolving, growing.
I need to change my priortise.
I need to work out what is important.

I am still might against the trach, but perhaps if I give it a chance, it can work out.
I must admit, it would be nice to not spend so much time in and out of hospital and theatre.

I am also not in the same position that I was last time I got one.
It was a sharp wake up call when my surgeon close to home reminded me of that this week.
How last time, things were desperate. There were a lot of close calls.
As he put it, I was very ill and very weak.
I worried him a lot and scared the heck out of him when I would drive to college despite being to breathless to get a full sentence out.
As he said, we dont keep people in ICU for weeks at a time for fun.
And not many patients stay under ward care for 5 months.
And as we joked, not many patients would get the privalage of the hospital staff seeking his advise at a 3am.

I am strong and in so many ways. This is going to be the turn around.
It has to be.

I am still putting a plan B into place though, which may still back fire, but is a risk I think I need to take.

Right now, exhaustion is setting in. If i am active for more than say 30 mins, I get so exhausted that I just want to sleep. Im aching from coughing also. But I am not as restricted as I thought I would be. Although it is tiring, I am still able to do jobs without feeling like I am about to collapse. This is all positive. This is all great.

I am spring cleaning my room and sorting my wardrobe out, to make things easier to, so I hope to get that done soon. It would be nice to see my floor once again.

One day at a time.

lies

I told a lie today. It was only a small lie, the same one I have told so many times before.
But once I finished telling, i didn't feel the same careless shrug I usually feel. I was smiling, reflecting.
It was upon this discovery that i stopped and thought. Perhaps it wasn't a lie. Maybe it's the truth. The thing i have wanted to be true for so long, now seems so natural.

I was talking about the past. About everything really. And i said I was so lucky. That sure things may not be ideal, but I was thankful to be where I am now.

It is true. For so long I resented being saved. I hated that things were hard. But right now, I am filled to the brim with love and gratitude. I could have lost much, yet here I am.

I will always want more but that doesn't mean I am not Damn grateful for what I have. I have so many opportunities and so many prospects that i can't wait to try out.

Hospital wise things are going so well. There are bound to be small hicups but i know i can beat them. I have a wonderful life ahead of me, filled with such amazing people, that I can't wait to get on with living it.

Oh and this was the first skin graft where there was no new or open scars to be discovered. Everything is on the up. And i can breathe a deep breath and admire the view from the top.

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