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.

Emotional Rollercoaster

It has been one crazy week on an emotional roller coaster.

First I got my letter to go and see a consultant in London, had me jumping for joy (well if I could manage jumping). Then I had a discussion with the nurses that come 3 times a week and we agreed that it would be good at this stage to drop it to once a week and after a couple of weeks not have them out all (except for tube changes.) This left me feeling a little unnerved. I know its good as it means I am getting better and dont need them, I'm learning to cope with looking after myself now. But at the same time its scary because it means I am responsible for looking after myself and then there is the whole what do I do if things go wrong or I get ill.

It was my dads birthday on Monday so I saw my sister and family, which was nice but left me feeling a little drained. Then I found some of my family who I havnt spoken to for a long time on facebook. That was an odd feeling, seeing how much they had grown up and changed. Felt nervous talking to my mum about it but it seemed to go well.

Then I found out about the whole Cushings thing. Im still not sure how I feel about that. Its scary and the treatment options are scary, but I guess I just need more time to adjust and to speak to someone who knows a little bit more about it or about me.

Friday I went for a meal with my parents, which was nice, though I struggled to stay awake the whole time, I felt so drained. I was also filled with self destructive urges.

Then got plans sorted to add some new 'staff' to my volunteer team. This is a huge step as my little team is growing into something to be proud of. It is still int he making, but I have worked hard and gotten everything ready for them.

Saturday I heard about Eva dying. I spent a good few hours crying. She is such an inspiration and so brave till the end. I wish I had some of her class and style. She will always be remembered and has made such a difference to me and so many others.

And tomorrow I go to London to speak with this consultant and hope and pray that there is something they can do to help, to allow me to breathe fully and to talk once again. I would love to get rid of this trach, it is really starting to rub raw at the moment and is so sore.

I couldnt sleep last night.  Lot going round in my head. Mainly Eva and London. I curled up with my music on and watched the sun rise out of my window as tears slowly plopped off my chin. My head just does not seem to know if its coming or going lately. Even the whole london thing is marred. I mean yeah, it would be great to be breathing and talking, but then there is the whole ethical side and going back on the transplant list not to mention can I offered the traveling up and down for treatment. But I am trying not to dwell on that at the moment. Im still not getting my hopes up until I speak to them tomorrow and find out what they suggest.

I finally got to sleep around 8am this morning and I was going to have an early night, but as its already 12:20 I think that has gone out the window. oops. So up early tomorrow. Its going to be a long day.

two steps forward, one step back.

Or is that one step forward and two back. *shrugs*

So, im beginning to get a little bit excited at the prospect of Monday. Tickets are booked. Train leaves town at 9:48am and gets into London at 12. (cost bloody £52 each though stupid train) Then coming back we leave london (Euston. Never been that station before)  at 9pm and get home at 11:30pm. (that was only £10 for 2 tickets yay)

The appointment is 2:40 I think (need to check that) and the nearest station is kinds cross and then a short walk. hmm what to do with all the other time. Obviously get food, but where. hmm might take my mum to Covent Garden after the appointment to get some tea and a nose around the shops. Ill have to have a think and plan somewhere on route for dinner. eeps I cant wait.

Then comes the descsion. Take my small crappy handheld camera or my big proper camera. I have to take all my meds in there original boxes so I suppose I am going to have to do with a back pack so might as well take my big one. Meds are going to take up enough space, wonder if I can be a real tourist and take my tripod too.

Anyway, thats my positive bit.

So my surgeon said he would send me a copy of the refferal let that he wrote so that I could chase it up. Well, I got this today and me being me, I was egar to open it and read all the gory details. I have this thing when I like to compare to others, suppose its in a way of recognizing that Im not actually lying. I have this huge fear of going to the doctors with something and them telling me I am lying about it and they dont believe me. Even after having a transplant, I was scared my doc wouldnt believe that I had needed it.

So anyway, I was reading it and found it intresting to hear about the different sizes of stenosis I have had and the types of stents they have tried. I was happily reading it until I reached:

This patient has difficult venous access due to server cushings syndrome and obesity.

Ok, so I knew I had bad access asI had to virtually always have hickman or central lines in but was told it was due to my veins being accessed so much that they had collapsed. And of course I knew I was obese. But I had no idea about cushings. Why wasnt it mentioned. I knew the very basics about it, that it causes psych problems and is basically to much cortisol (a steroid) in the blood and that it is a very rare disease.

A quick look on google tells me that it can cause weight gain, tiredness, osteoporosis, and server mood swings that can often present as a nervous breakdown. So is this what is causing my depression? Could this be why I couldnt cope a while back and ended up an a psych ward? Is this why I sleep all the time and have no energy? Could it all be down to this disorder?

So I looked at causes, which kinda unnerved me. The main causes are tumors, either cancerous or begnine, well I know my anti rejection meds can make me more prone to cancers, but I thought the main types where ovarian, cervical and skin, but my mind is in overdrive.

So I go on to read a little more. First they have to find the cause EG: where the tumor is, its most likely on the pitutry gland, which is in your skull. It is often removed, by drilling into your skull through your nose or gums and remove the tumor.It maybe nesscary to have a skin graft after the op. You may also require chemo or radio therapy. Plus you may also need steroids for life.

Tablets for life I can deal with, god knows im on enough of them already. But all the other treatments? Could I really handle them? Would I really need them? The way he wrote server cushings, kinda makes me think that I will need treatment. But I still have to question why I wasnt told about it? And how they found out I have it. The only way I can think of would either be bloods or a 24 hour urine last time I was sedated in ICU.

I dont know, I have so many questions about it and no one I can really ask any time in the immediate future. So my head will just keep exploring the possibilities and looking for correlations.

I just really hope it dosnt interffer with this appointment on Monday. You know, if they turn around and say, oh get that sorted and then come back to us, I'm not sure what I would feel then. Suppose only time will tell.