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.

London!

As most have you have probably already figured out, I am indeed back from London.

Stupid computer issues are still being annoying though, I tell you the company my computer comes from are the bane of my life. My computer is involved in my life so much, that to go without it for any period of time is hard, but its over a month now since I had a full working laptop urgh.

I rang to tell them it had a fault, it took them nearly a week to collect it, they then had it for over 2 weeks and another week to return it. I get it back today, unzip the case (It was sent off as laptop, charger and case, all with my name in large letters on it) To find only the computer no charger. What use is that!! By the way it was the cooling system that had gone. After 2 weeks of not hearing from the company I got my mum to ring them and their reply, yeah its back sitting here, well gee thanks, weren't you supposed to email/call? When asked why it had taken so long, they said because its an insurance job, payments had to be sorted. Ermm no, it was a warrenty job, nout about insurance. When I get the letter back today, it was sent to sony in Germany for repair as it was a manufacture fault. So the company didnt even do anything with it except ship it and return it and they still mess it up.

I paid extra when I got it to upgrade to a sony as they have a good rep, never again. Thats the cooling system and motherboard both gone in like 8 months on a top spec laptop. They send their appolgies and a free cleaning cloth (Like you get with cheap sunglasses) Anyone in the north west, if you get DSA, avoid Remtek at all possible costs!

So yeah, back to London. It was fun. It made me think a lot, but fun all the same.

Got into Euston station about 1, so I took mum out for a taste lunch in Prezzo, which does the most tasty Italian food. nom nom



We then took the short stroll from Euston to Kings Cross and booked into my mums hotel room, dumping half my stuff and all of her stuff there then straight back out to book me into my hotel (or hospital hehe.) My letter said I had to be there for 4, we got there about 4:30. The letter said ward B, which had a big sign on the door saying shut go to ward C. Went to ward C and they directed me straight into a room that resembled a fish tank. Full windows the length of the room. Full monitoring until next to the bed and a load of equipment such as resus trolley, and about 4 oxygen ports. (I was later to find it was a HDU room I was in)

Pretty uneventful to be honest. They said I would be on the early morning theatre list, but didnt end up going down till about 3. Under for about an hour. Pain was manageable, but when i came around it felt like someone was sitting on my chest. I tried telling them, but the drugs where still in my system and I couldnt lift my arm to my neck to talk so I began to panic. They ran a few nebs and gave me more pain relief and it seemed to ease off.

Was discharged the next morning with a little bit of information. (See previous post)

Was pretty tired so didnt do very much, before putting my mum back on the train. I went to stay with a friend. we had a pretty laid back week, lots of munchies and films, which was ideal.



And of course drank lots of food coloring.


Went to Camden one day and drank lovely milkshakes in an American Dinner. I also managed to finally find a nice bag for the summer to carry all my junk around (I usually have a black Jack Skellington one, but black really dosnt look good in summer)I needed to to go across my body to distribute the weight, but big enough for things like alco gel, spare tubes, drink and most times my camera. (I dont leave the house without spare tubes and tissues and a drink)


We also had a day at the zoo. We saw Otters.


A gorgeous Galapagos tortoise.




I found Nemo!!


And dory! (Yes I love disney)


I found a pushmepullyou (Anyone who dosnt know what one of them is you need to watch http://www.youtube.com/watch?v=niKkURpdzIQ&feature=related (wont let me embed) but the 1967 version of Dr dolittle is the best one!! )



There were lots of bright colored birds

Including ones that used the same hair color as me :)


Lots of bright butterflies that would come and land on you.


Giraffes!


Tiny baby monkeys! (On the left on top of the log)


Pumba!! (there goes the Disney thing again hehe)


And the most gorgeous penguin! They were all being fed and he was following the keeper around. He wasnt interested in the food, he just wanted a cuddle hehe.


Ah it was great fun.
It was a really big step I think. When I first got told I had to have the trach, the thing that put me off the most (apart from the obvious) was not being able to jump on a train/bus to go visit or stay with friends. I had been used to going to visit people every couple of weeks and I didnt want to lose that. Well I was already down there so I stayed and took the train back on my own. Had to take a big case to carry my nebulizer in and all my other junk like medications and dressings. I didnt take my suction, I thought, if I need it, then im not well, so I can either jump a train home or go to a hospital there.

It was difficult sticking to my routines of nebulizers and dressing changes, but I did enough to survive on for the week.

It was also a bit of a wakeup about just how different I am from last time I was there. Since I had started visiting a friend there, I always had breathing trouble due to my stenosis, but the main factor was the depression, I didnt want to do anything, but when we did do stuff, I was able to keep up. This time it was the other way around, I wanted to be out touring and seeing and doing things, but just could not keep up with everything. I used to love getting the tube as it was so quick and directed you straight to where you wanted. This time however, I dreaded it. Most the stations have escalators, which is ok, but a lot of stations and attractions in london involve stairs (my worst enemy). People would be virtually running up them and I was going as fast as I could, but still gasping. I do hate that feeling. I could never live in London, they all walk to fast.

But its a step in the right direction towards independence. And who knows, if they fix my airway maybe one day I will be able to run up the stairs with the londoners.

And the tides turn

So I arrived in London about 2ish on Sunday. Took mum out to Prezzo for dinner, it was very yum. I had rissotto and she had chicken.

Got to the hospital just after 4, where I was addmitted to ward C, funny to be on C ward considering the ward I have been on at home was C ward. I was addmitted to what I reffered to as the fish tank! It was like a glass room so that you could be seen easily from outside. Kinda daunting at first as it was technically a HDU/ICU so all the monitors and charts where around the room.

There was a lot of uncertainty about who I was and where I should be and it was decided that first thing in the morning I would be moved to another ward. This was later changed and they decided to keep me where I was as I was booked in for a HDU bed post op.

The next morning I was awoken at 6 to get ready as I was first on the theatre list. My old ward used to insist on a shower with anti bacterial soap and fresh towels, followed by clean gowns and surgical socks on and the bed was changed so that that was also clean. But in this hospital it was more so heres your gown, im going to pull the cutains while you get changed and that was it.

So I sat around for ages and at about 11:45 they finally said ok we are taking you up now. Got up there and they said, sorry not ready for you just yet, we will call you back in about 30 mins. 2 hours later they finally came for me. Canula went in fairly easily and I was off to sleep.

However, I hated waking up. Usually it does not bother me much but this was the worst wake up I have had. When I was first coming around, it felt like there was something heavy sitting on my chest. I tried telling the nurse this, but I just couldnt get my arms to work enough to get my hands near my throat. They kept telling me to relax. Eventually I was awake enough to tell them, so they sat me up and listened to my chest and such. Nothing sounded out of place so they just monitored me. The pain control was better than my hospital at home and soon I was back on the HDU.

Slowly the IVs came down, as they had been pumping me full or hartmens solution and then the monitors came off. Slept a lot but managed some food and drink then got a major craving for McDonalds. My friend came to visit, which was fun, so I got her to bring me a shake and fries. yum yum

So anyway, I spoke to one of the registras as my surgeon was busy. Bascially they now think that the way forward would be reconstruction using a piece of my rib to graft the cartilage.

They want to fit me in as soon as possible, so there talking of doing it in 6-8 weeks. It will be a day in surgery to do it, IE at least 4 hours and I will have a sore throat as well as a sore chest.I will also be in for approx a week.

I dont know a whole lot about this procedure yet. I have a vague memory of looking into it when I was first diagnosed but it was ruled out fairly quick. We shall see. I need to do some research and see where it leads.

But overall positive. They think they can do this rebuild and think they can get the trac out in about a year. So yeah, good news.