Monday, October 21, 2013


I havnt posted in nearly a month. Its odd, I remember the days when I could post a couple of times a week. These days, the weeks seem to escape me. Its not that I dont note them, I cherish them and all I am able to do during them.

I guess my lack of posting really began when I changed my nebuliser machine and had more medication added. I used to be stuck on my neb for hours, so used to type whilst on it. Then I upgraded my machine and it was wonderful, as I spent a lot less time on it. However, the downside is that I have to hold the 'mouthpiece' whilst it is running, meaning that I only have one hand, making typing difficult. I also had my meds changed, which leaves my hands very shakey, again not ideal for typing. But all that aside, I needed a break. This is the area that I use to get things out of my head, to work things through in my mind. Yet, I didnt want to always be posting the same things over and over.

But the truth is, that is all my mind is focused on. There are times that it slips away for a moment, but it back the next time I move, the next time I cough, or when the post comes with yet more appointments, its all back in the fore front.

I met with my surgeon a couple of weeks ago. I wanted the truth, the whole truth and nothing but the truth. I told him that I was getting tired and my hope was running seriously low. For months now, we have been doing monthly laser therapy. This means traveling to London (200+ miles each way) and checking in on Monday afternoon. There is usually an array of tests, just incase, bloods, xrays and other such delights depending upon my obs, such as ecgs. Tuesday morning, its up, showered, and changed into surgical stuff. I see two members of the anesthtic team and the full ENT team before 9am. At some point during the day I will be taken to theatre, where I will undergo a general anesthtic (full knock out.) This can last anything between 30 mins and 3 hours depending upon what they find, though I also ended up with the anestitst for about an hour whilst they dig around trying to find veins. I then spend the rest of the day back on the ward, usually with higher dose painkillers these days due to the damage and some oxygen to try and clear my system quicker. Wednesday morning I get my results and see the regular ENT team about 9am. About 10am my consultant usually comes to discuss things further. And once anti biotics have been decided upon and I feel up to it, I begin the hike back home, through central London trying to avoid peak hour on the trains. For the next 5 days, I am pretty sleepy and not really with it, reallying a lot on painkillers once again. After that, I begin the downward spiral as my airway builds up where it has been lasered.

Its not an ideal cycle and I find that I get very little benefit out of it.

But my surgeon confirmed, that right now, we are getting shorter and shorter on options. The usual procedure that has a 99% success rate has failed me 3 times now. The experimental surgery has not helped at all and taking any more rib cartilage is out of the question now as I get server pain at times where they have taken so much. Over the next 10 years or so, that may ease off, but its going to be a slow trek.

So where do we go from here? and how much am I actually up to going through?

If we stop lasering, my airway will close up. I will become more and more limted in my ability to do things, eventually setteling at a point where I would be breathing through about a quarter of my airway. But, pretty soon after we stopped the laser, I would lose my voice. I have done short periods with no voice and it is hell. The simplest of things become impossible. Ordering drinks at the bar, buying stuff in most shops, conversation, shouting for help.

But what is the alternative?
My surgeon is talking about trailing some stents to hold the airway open. I have tried them several times, the last time nearly killed me. My body scared up around the stent and I was found in full resperatory arrest, waking up several days later in ICU to find I had narrowly escaped without brain damage. Every other time, I have had them, they have caused major issues, many prolonged stays in hospital, many ICU visits. Am I up to trailing them again? Can I cope with a prolonged stay in hospital? It was only September that I got home from a 3 month stay, if that happened again, what then? I love the staff in the hospital, but its not home and there is no real conversation, especially when everyone you know are still miles away.

I have tried talking to my mum and such about where things are at. The hardest part, I cant seem to make her understand where things stand. She seems to think, that I should just quit the surgeries for a few years until technology is more advanced. But without surgery, things will get worse until I eventually cant keep up.

My body is already complaining. Almost constant lung infections, are taking there effect. Flying now causes my lungs to bleed. Luckily its only small bleeds, but it each time seems to get worse. And the last thing I want to do is damage my liver with too many antibiotics and having to spend weeks on IV meds.

So, whilst trying to decide where to go now, searching for another miracle, all I can do is make the most of what I have. And I have been trying so hard to do that.

Last month I went on holiday with a friend abroad. Tonight, I have just gotten back from another holiday abroad. I am spoilt and truly luck to be able to do all that. At weekends, I make the most of being able to spend time with my niece. We do simple things together, meals out, cinema or just curling up on my bed together and watch tv. Such simple things and yet they bring so much pleasure, comfort and happiness. I truley treasure them, even if it takes me a few days to recover.

I meet with friends where possible and I am making plans for the next few weeks, for christmas, for birthdays and for future holidays. All of course, going around the admissions.

And so, though I may go on far to much about the same subject, right now it effects everything I do and yet there is no escape. But that is not to say that I am not living. I am eternally grateful to everyone who has helped me get to this point, the medical people, friends, family, donors, researchers. I know that I am lucky to be here and believe me I do know it.

1 comment:

  1. I have been wondering how you were, so nice that you managed to go away for a holiday.It sounds like you have a lovely niece as well. fingers crossed for your future
    Tilly x