Tuesday, July 20, 2010

Further details

ahhh, So, I finally managed to get the call I have been waiting for and actually have someone there to interpret for me.

My surgeon down in London has been trying to phone to explain the 'procedure' and everything that goes with it. However, fitting it between his surgery and appointment schedule (He works in like 4 different hospitals, inc. Harley Street) around the times when I have someone home to speak on the phone, had been proving difficult. Today however, my dad was in this morning, so though I was grumpy at being woken up early, I was able to get answers to all that I had wanted to know.

I do have it recorded on my laptop for future reference, but I am not going to post it as its obviously other peoples voices and yeh, should anyone in the future want more info, please get in touch.

He basically said, I would need to stay in for 7-8 days minimum. And I was thinking, hmm thats a bit long, surly I can hurry things up a bit. After all there are people who have transplants these days and are out in less than 12 days, so surly a little bit of surgery, whilst I have a trach in to secure my airway, wont be a huge deal. Then he went on to explain a bit more about the procedure, to which I kinda groaned. >.<

Firstly, they cut into my chest and remove some of the rib cartilage. They will also perform some type of scope on my airway to assess and measure it. The cartilage will then be shaped and sized to match my trachea. The trachea rings where there is narrowing, will be split into two pieces, so that there is a gap at the back and at the front. Here the rib cartilage will be fussed and a stent put into my airway to hold it all in place. They will then harvest some skin grafts from my thighs to place over the cartilage and the stent, to encourage the body not to attack it. And thats it for this stage.

Its going to be weird waking up from this one. It is a 4 hour minimum procedure, couple that together with anesthetic and line times and then recovery, I will probably be in theater for about 6 hours. So longest procedure since my transplant. I was only in for 90 mins for my trach and that was considered complex and my hernia's have only been 2 hours max and they did biopsies and such then. I think my other longer one was just on 2 hours also and that was an acute granulated appendicitis and a large ovarian cyst. So I am going to be wiped out for a while. And sore all over. My thigh, my rib and my throat. I really hope I get IV painkillers for a few hours after this.

My worry was that, like with the last stent, my body would attack it and build scar tissue over the work they had done. This is what kept causing me to pass out and get breathless with all my previous surgeries. However, they think that by covering the work with skin grafts, that it should stop that from happening.

I also enquired about the success rate of the operation, well more so mortality rate. They have done about 400 of these procedures and only had 2 deaths, so that is positive.Thats what, like 0.5% risk, again I can live with that.

The main risk of the procedure is that it might not work out. They dont aim for a 100% airway, they aim for about 80% airway. Currently I have about 40% so that would be a big improvement for me, ha its hard to imagine being able to breathe twice easy as now. When I passed out and went into arrest, I had about an 8% airway and last time I was admitted to ICU it was about 15%.

The thing with it, is that the staff at my regular hospital, when I wasnt feeling well used to check my oxygen saturation levels and it was always 100% so they were reluctant to do anything. But my oxygen stays ok generally as when I breath in my airway widens. However, when I breathe out, its more like a vacuum and my airway narrows again. So I can get the oxygen in but I cant get the carbon dioxide out. Hence why I get horrible symptoms like headaches frequently and tiredness.

I also asked if I would need steroids. After the whole cushings thing I was really reluctant to let them use steroids. They said, given my history and such, that they would need to use them during the actual surgery, but afterwards I should be ok with out them, though I will need a course of IV antibiotics.

So overall fairly positive. Yes it is going to be hard work and painful, but I can deal with pain and they will give  me medication to help with it. And if it means I can breath better and even get rid of the trach, then it will all be worth it. And if it dosnt work, it will still be worth it as I know that I have tried. I couldnt live with the regret of not going through with this.

My big stage, I suppose, will be trying to find time to talk to the anesthetist if possible. I think this time I should mention about my PTSD and how pain and anesthetic can often trigger me into flashbacks, like it did when I got my trach. But then what if I tell them this and they treat me differently? I wouldnt want to actually freak out or be in pain or something and have them pretty much ignore it as its jut a flashback. I dont know, I need to think on this one.

oh, and I was out with my mum earlier. She pointed out that I seemed to be gasping more than normal. I did confess to her that I had been feeling a little worse lately and I explained about the headaches and such. She did agree with me and thought I should see someone about it. But as I said, I have too much on this week to be sick so I am refusing to let it get to me. (lol) I am going out with my dad tomorrow, seeing toy story 3 on wednesday in IMAX!!! (EEE excited) and potentially doing something Thursday. I refuse to see any doctor on a friday as everytime I do, I end up being admitted, usually to a hospital I hate. I still have all my back ups, such as my consultants email and the ward number. So if it gets worse, I can get checked. But other than that, i'm in clinic anyway on monday and I have nothing on next week so I can rest more.

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