Thursday, January 19, 2012

Be careful what you wish for.

For so long, I have wanted to meet like minded people in the same sort of situation as me. 
I have found a few people, yet it has always been differnt, all in differnt postions or places of treatment.
This week, I met two people, all in the same sort of place as me, all with the same views and all stuck. 
and after all this time of wanting to meet others, I wish I could take it back, I wish they were not going through this. I want my illusion back that tracheal stenosis is rare and that those whose treatment fails is even more rare. 
But the illlusion is shattered and I cant go back now. and it hurts so much to see them suffer. It hurts.

What adds to that hurt, is comparing experinces, I am slightly ahead of them, having had 3 radicals compared with there 1 and 2 and so they look at me for hope and I do try to give it, but this week, my hope too has been broken. And this time, I think it may take a while to repair.

Let me play the last day or so back.
The weekend was shrouded in pain and panic, though I had a great time. I went into hospital Monday evening, you can tell I am a regular as I dont even get shown to my bed these days, just told where I am as differnt staff shout hello.

Monday was a late night. I started talking to the 2 girls on my bay. One is the same age as me, from Cornwall and one is older, with kids and lives not that far from me. We compared stories, not just medical, comments off rude people, excusses we have given, reactions and tales from ICU and hallucinations. We all have very dark senses of humor, but I think most people who go through similer things have that in common.

What we found more so that we had in common, was that we had each been told that things were going to get better with the next surgery, until that fails and you start again. We have each been told, that it is very rare for the radical procedures not to work.

Surgery the next day, went ok. The stent was removed with no trouble. I awoke in the recovery room, I recall asking for pain meds as I was in agony, then I watched the nurse go to get them, whilst she stopped by the nurses station to have a chat and then speak to someone in the staff room. By the time I got my pain meds, pain was the last thing on my mind. 

I couldnt get the air in easily. I was using my accessory muscles. I told the nurse this, to which she told me my sats were fine so I was fine. I thought here we go again. I think my problem at this point, is that I remain to calm. I told many people I couldnt breathe, in the end they sat me up more, but I had already hunched over to give extra support to my chest. My muscles were burning so much.

At this point, my surgeon walks past, seeing that I was awake, on his way past he came to tell me that everything looked good. To which I gasped at him and said, in very broken sentence, Great. Just. Wish. I. Could. Breathe. Now.  He kinda looked at me and then said, oh lets see who is caring for you. One of the anesthtic docs came in and she wasnt happy with things, then my actual anesthtic doc came in and lsitened to my chest and said I was badly ratteling and had a restictive wheeze. High flow oxygen was started and I had a large adreneline nebuliser. Within 30 mins, things had settled. There had been swelling upon removing the stent which was what was restricting me. By this point, I was exhausted, but had to stay in the recovery room till I got the all clear, so a 30 min stop turned into a 4 hour stop.

Later that evening, I spoke to one of my favourite nurses, who is leaving the ward. I asked her some general questions. The main one being, how sucessful she thought the radical procedures were. She said if the first one works, then great, but if it dosnt, or if its post intubation stenosis, then the chances are you are going to need a more and more radical procedures and the best you can make of things, is dependant on how long oyu can go between lasers and your quality of life inbetween. Why couldnt anyone have said this long ago.

I also found some more info about my last procedure. I was meant to wake with a trach in place, but there were complications. Because of the amount of surgery that has been performed on my trachea, my trachea has now hardened like bone. The fear is, if they put a trach in, my trachea will literally shatter, leaving me no option but the trach.

And so I conclude, that I am rapidly running out of options.
Every radical procedure I have gotten worse after. Every laser treatment takes me longer to recover from and I never gain back what is lost. I cant keep living with surgery every month, its too much, its not way to live, and everyone leaves me more restricted than the last.
Transplant has not been mentioned since.
Now is where we find out how far I am willing to fight for life.
I am back in 2 weeks for laser. If there is scar tissue, I am going to demand to see the surgeon in clinic the next day.
If radicals and laser no longer work, the only other option I can see is to go for the permant trach.
but neither is that straight forward. 
If it goes in, it stays in, there will be no chance of it coming out ever. It will be my only airway, so should it accidentally fall out like last year, it would be an emergency situation.
If my trachea split, it would also mean, that my voice would gone.
Is life suistainable, when you cant talk?
But that is not all.
As we found with the trach last time, my body disagreed to it. It was constant infections and the strain on my windpipe made it close more and more.
With a trach, I would say I would get perhaps 18 months.
I am so thankful and so happy to have gotten the chance that I have, but right now, I am running out of options. Laws are not going to change in time.
When I talk to my surgeon, if he confirms all of the above, then I think the next question needs to be, what will happen, how will things progress if I stop treatment. And what support can my family get to deal with that.
As morbid as it sounds, I have to be practicle at this stage, there is no point in prolonging the envitable when it only draws out the pain and suffering of all involved.
Something has to give.
There has to be more.

I have slowly started speaking to my parents about it.
I think my dad gets it, Mum is still holding out hope, along with the thought that perhaps life with a trach and no voice would be enough of a life on its own.

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