Survivable

I thought it was time to get some stuff off my mind again.  Writting does help, so does ignoring everything and pretending its not happening, but I know I can only do that so long before a giant exploision occurs (see I can learn from the past.)

The last few months have been awsome, and hard and scary and happy and most of all full of yet more memorys. I gather those close to me and pull them closer, it feels good, better than when I used to push them away. And yet there are times I still feel alone and times when I dont feel alone, but wish I was. Things get confussing. Like seeing concern, worry, panic and generally sadness cross a loved ones face, then I wish I were alone. I hardly panic, I figure there is no use to it, sure I get scared, but I seldom panic. Either I will come out of the other side, or I wont. The way I see it, I seldom have control over such things. Im not saying that everything is survivable, just that everything except the last thing is.

The last month has included two admissions and one holiday. The first admission, was to my usual ward close to home, well I say my usual ward, that is a whole level of another story. The first few days, they wanted me in asap, and the only place with a bed, just so happened to by my old usual ward, the one where I first had my trach put in, the one where I spent months of my life, the same one where I more than a few close calls and respiratory arrests. Its been along time since I have been to this ward. Mainly because its a surgical ward and there is very little that they can do surigically. Most the staff have changed, but still, I hated being there. The place is stepped with memories. I did expect more of the staff to come by and say hello, however, after I while I recall that actully last time I was on the ward, I kinda walked out without telling them. Im not a rebel patient and I do do as I am told, but I was in pain, had lack of sleep and was talking to a brick wall. I had come out of surgery the day before. Due to the amount of scaring I have in my airway, the slightest touch is agony. The drs are aware of this and for this reason I am on things like Morphine when home. I take it, I deal with it and get on with it. Being in hospital, the nurses are in charge of painkillers. I hadnt sleept well ( i dont do well on little sleep) and for 3 hours solid I had been asking for painkillers. I was pacing the room in tears because I was in agony. They were discharging, I was just waiting on them to print the paper work. I live a 5 minute walk from the hospital. So I packed my backpack, walked home, took my painkillers and slept in my own bed. I would bet, that they didnt notice me gone for a very long time. They didnt ring to make sure that I was ok or anything, so yeah. But anyway, i digress.

So back on my old ward, I hated it, the staff seemed distant, untalkative. I barley saw anyone and felt like crap sleeping most of the time. A few days later, I was back on my own ward with the staff I knew. Staff who think nothing of grabbing a drink on night shift and sitting down talking to me in my room. So I did my 2 weeks of IV antibiotic, with a continous infusion of bryicanyl. and I began to feel better.

All wired up

I am under strict instructions on the ward that I am not allowed to mix. I avoid the social areas and I go home of an afternoon. So I have now told the drs that I dont like this new pattern and I hope that I dont end up readmitted. The pattern being that I was addmitted in Novemeber, and december and now januaury all for IVs, all for the same infection.

Who says hospital beds are made for one.

The problem being that I seem to be on one big circle (gross stuff in the paragraph feel free to skip) Because of my throat issues, when I cough, the trach tube irriatates my throat, causing it to bleed. I cough up the blood, which eventually clots. A few hours later when I cough again and irritate the airway, the blood clod shifts, which is super sticky and hard to move. A labrous 10 min coughing fit usually follows including headache, dizziness and general exhaustion. Eventually the clot moves and I can breathe again, but then I cough blood due to the coughing and we begin all over. Though because I have a unatural airway, it is actually possible to block the tube, which if I dont clear quick enough, I will pass out from and/or die from.

So yeah, generally not the best thing to experince.

None of the above can be fixed only managed. And so the best way to do that is to keep on top of any infections. Then we hit the next problem. the current bacteria I have, I am now colonised with (means it is unlikely to ever leave my lungs.) It is also resistant to nearly every antibiotic. For the time being, we treat it only when it gets to the point that we cant leave it any longer. At this point, im usually struggling to breathe, spending more time coughing than not coughing and sleeping at every opertunity. There is one antibiotic that can keep the bacteria under control, but if we keep using it, the bacteria will adjust and when I need it the most, it may become resistant. Its like being between a rock and a hard place.

I do my nebs everyday without fail. I am very compliant with treatment, I know that if I miss one session then I feel it in my lungs. My current session includes Salbutamol (short acting bronchodialtor - to open the airways) ipratropium (long acting bronchodialator - prevent bronchospasms) Hypertonic saline 7% (salty soloution - makes stuff on my chest looser) Amikacin ( anti biotic - keep on top of infections) Budesoonide (steroid - to keep inflamation down) +/- Dnase (DNA acting solution to thing the stuff on my chest - mega expensive, can only get limited options due to funding) I do these between 2 - 4 times a day depending. I also do chest physio and spend a minimum of 9 hours on a heated humidifier.)

So overall my team are on top of my treatment and I am doing everything I can to stay in control myself. And yet a week after coming out of the hospital and I feel like I am back to square one. If left to my own devices I can sleep for 14 + hours straight. The more I move, the more I cough and the more exhausted I get.

Im finding the whole thing frustrating at the moment. I always thought it would be the something surgical that would finish me off, my latley, it is looking more like it will be this infection. Its soul destorying.

But anyway, onto the nice things.
I have just spent a few days in france with my parents. It was nothing major, but a few days away from everything. Time to relax and just be. prescious prescious time with my family, doing silly unintresting things like cooking a meal and generally hanging out together. It was nice and I totally fell in love with the place that we stayed. One day, I want to own a beach house there. I think the air would do my lungs good.

I forgot a piece off my humidifier. Had to kinda do a Blue Peter job, but it worked. Do I get a badge now?

I am also doing 2 night classes. One for photography and one for guitar. I am loving it. I miss playing an instrument and the guitar feels like the right one to learn with. Its sitting next to me now as I write this. I have been practising my cords, until my fingers hurt. I will get better and I cant wait.

Anyway, long enough, thank you for reading and all that jazz.

The 3 Hs, happy, healthy/ish and holidays.

This blog has been well and truly neglected. I would like to say that that is going to change, but I think we know that it is not true. So many things have changed though. I think back to when I started this, to who I was. I was deeply unhappy and not just unhappy, I depressed and remembering how bleak things were then and the things I did, makes me shudder. I never want to end up with things that dark again. I put myself at risk so many times. Overdoses and injuries, infections and abuse. I hope to never end up back there. 

But even thinking back shorter periods of time, things have changed so much. I have come to accept who I am, mostly anyway and that for the forseable future I will have a trach. That one is not so easy. Yes I hate the way it looks, but more so I hate the inconvience of it. The machienery that is needed for up keep, the changes in my voice, to having no voice sometimes. The inability to have a conversation if I am using my hands, the added caution with things involving water, dirt, dust or infection. But even so, I have to say that I am making the most of things so far. 

I have lost about 18lbs, I am eating healthier and I joined a gym to build up some muscle tone. Admittedly going to the gym kills me and I have to run a truck load of extra treatments to do it, but it is focusing on the long term effects that matter more at the moment. Oh and I havnt been for about 6 weeks as my latests infection has completely knocked me on my arse.

But apart from that I feel that I am living for the first time in a very long time. I am doing things that I want to do and ejoying them.

I have just gotten back off holiday were I spent some time in Turkey with realtives and in Greece. A chance to escape everything and unwind. I have always loved travel more than anything. I even found wild tortoise (something on my bucket list)

Speaking of bucketlists, I also go to meet and shake paws with an old english sheep dog and attended Creamfields where I watched Avicii live. I am currently pursuing seeing the northern lights.

So many things. 

That makes it all sound like it has been fun and joy and it has in so many ways, but there has also been the usual background rubbish involving numerous courses of antibiotics and admissions for IVs. After many years planning, they figured out a way to put in a porta-cath, which is a port underneath the skin in my chest. This allows me to have IV medication straight into that now, instead of having to cannulas and needles. I have also had sugery to fit a stent into my airway, to try and save some of my voice. It is helping so far, but is also causing problems such as pain and potentially adding to my infection build up. I need to go in for IVs at some point soon (I was last in about 2 weeks ago, having gotten out for my holiday)

I never used to be able to understand how people could become obssesed with making sure everything is clean and things like health being such a big thing to them. To me it was always something that was either there or not. But as time goes on, and I find myself having to elvauate myself and my circumstances all the time, I find that it does become a much bigger thing. Kinda, ok my breathing is noisy today, what do I need to do. Is it airway or chest, ENT or pulmonary drs. Does the risk of antibiotics and immunity outweigh the risks of lung damage and scaring. Do I want to gain a couple of weeks of voice and good breathing, at a cost of infection, pain and exhaustion from surgery. Most days I dont know what the answer is, but I can see how it becomes a big thing. But in the end, I know that all I can do is to keep up my treatments as best as I can and hope for the rest to fall together. 

In the meantime, I aim to enjoy what I have. Keep working on things off my list and trying to achieve things that most people my age have already achieved.

Excitiment

Exciting things are happening all around.

I mentioned in my last entry (I think) that when I am having a good spell, yet need to force myself to rest to keep the good spell going, that I begin to day dream. I dream of possibilities and things I want to do. The last few days I had this overwhelming urge, that I did want to go away. Ok that urge has been there for a while, but none of my plans so far had been viable, from a health and money and ability perspective.

All that has now changed.
I found a cruise, that looked wonderful. I wanted to visit somewhere new, and now I have somewhere to add to my list. So where am I going, well, as of this afternoon, I am booked on the cruise ship the Balmoral, which holds 1300 passengers. And I am going, over the course of 9 days, going to visit;
* Oslo, Norway
* Copenhagen, Denmark
* Hamburg, Germany
* Bremerhaven, Germany

How exciting is that?!?! And no boring journeys, as I will be cruising, with libraries, and pubs and cabert shows and oh so much fun.

I will be celebrating my 10 year transplant anniversary in the middle of the North sea! eek excitement.

There is more.
The night before I travel, I have arrange to take my Dad out. He is a huge fan of Andre Rieu, but decent tickets, sold out long ago. He has no idea yet, but I have bagged 3 front row tickets for his show! Its his Christmas present and although a little more expensive than I would normally spend (you dont want to know the price) I know it will be something he will love and never forget.

I have a good feeling about December.

I am also talking to a kinda old friend and things are going so well there. I am not writing much more on that just now, but know that I am really enjoying it.

I am weary on what I write here. There are a lot of people I hope dont read it, but there is also a lot of, not sure how to put it. In transplant communities, there is a lot of support for people who are on the list so to speak.They support each other through a time that you can only understand when you experince it. But when it comes to experimental surgery, its the opposite. There is no support and so the opposite tends to happen in that a type of competition begins to form. I get it, I mean, I understand where is comes from, the desire to be well, but with the risks involved, beleive me I wish I were able to wait until things become set in stone. I dont know, I am going off track. I guess what I am saying, is people dont see clearly, its hard to see the full picture when you are so close to things. And so I am cautious on some of my writing, for many reasons.

Ah its past my bed time, but right now, December is going to be a good month. And then I think 2013 is going to be a hard year, but a positive one. 2013, the year I learn to breathe again, would sound good to me!

stupid visa

It feels like a long time since I last wrote here and yet it is only a couple of days.
Its strange how things so can change so much.

The thing that has been taking up most of my mind, has been applying for a visa to take my niece to Florida. I was meant to be going on the 1st June, but can not get a visa appointment till the 6th. After much hassle, we have managed to change the dates of our trip, though it was hard telling my niece. But the us embassy, are a real pain. There system really sucks and so, the whole visa fiasco, is costing close to £2000. Not to mention that we still have the problem of my nieces school to tackle.

But, things are at least starting to progress and so that is one less thing on my mind.

My chest seems to be settling down a little again, which is a good thing. I have an emergency appointment with my chest consultant early tomorrow, so it will be interesting to see if he can suggest anything to make things easier.

Then its back to London next week, though I am not sure yet if I will keep that appointment as it was meant to be a check up before I went away.

Apart from that, things have been good. I got tons of hugs of my niece this weekend, which was lovely. Though she is getting to tall, im used to hugging someone who is shorter than me, but now she is taller.

I sat out in the garden for an hour this afternoon with a book. Mum had been gardening, and so had the net off the top of the pond. So she put me on fish watch when she went out, which gave me a good excuse to sit out. It was nice, I like the sun, it puts a much brighter spin on the world. And tonight, I actually have some colour. My arms and chest have a nice pink glow and hopefully my face does too.

I have also started watching the big bang theory, after a lot of people told me I should and I must say, I love it. It took my a while to place where I knew one of the lead actors from, but it came to me the other night, he used to be in Roseanne. Oh man I used to love that show. But anyway, the big bang theory, yeah, really cant get enough now.

Did I mention that I have been selling a fair few cards? People seem to really like my stuff. I might look into doing this as a side business after the hols. Though I hate working to a schedule and much more prefer making stuff as I feel like it. At the moment, a lot of what I have done, have been bespoken. If I do it as a business, I hope to keep it mostly as I want, with bespoken being extra, maybe even going into things like wedding invitations in the line of bespoken.

This is a piece I was working on the other night, a new cover for my notebook. I have never really played around with inks for background, but i think this turn out well. I love the blue to purple bit.

On Christmas, Hospital, and choices

WOW its like a week since I have written. I didnt realize it was so long. Guess, I have been pretty busy (well not really busy but doing other stuff) this week.

I have been going out during the day most days. Most of the time I go home and sleep in my own bed for a few hours, but I have also been out shopping a few times (with the aid of a wheelchair) and I have managed to do the majority of my christmas shopping (just one left to get)

Its been rather surreal. I came into hospital in November and there was no real sign of christmas and it wasnt that cold. Now when I go out I see all the decorations going up, hear the carols on the radio, see the ice covering the ground, see the snow falling and definitely feel the chill of the December air around me. It feels kind of safe to come back to my room in the evening. My room where the only sign of Christmas is the advent calendar on my shelf and 2 christmas cards on my window sill amidst the get well soon cards, where the temperature is constantly controlled day and night. Its easy in here to pretend that Christmas isnt happening, that being out is merely a dream. That is until I open my blinds and see the Ice rink outside my window that appears on the flat hospital roof.

Its not that I dont want christmas to come. I mean I  used to love christmas, before the whole incidence thing I mean. But accepting that it is actually coming means admitting how long I have been in here for and how much there still is to do. Usually by this time of year, I have cleaned the house top to bottom, shampooed the carpets, helped get all the decorations up and tidied. My mum has usually made christmas cakes for all the family and is moving on to eccels cakes and mince pies. We have usually spent Saturday nights watching films while doing all the wrapping up. Under the tree is usually overflowing with presents all ready to be opened. But not this year. This year everything has gone on hold. Everything has stopped while I try to get well again.

Its pretty sad. It kind of reminds me of 7 years ago. When I skipped christmas and everyone around me just went through the motions for the sake of the kids. The kids are older now, they understand more. But of course that dosnt make things right.

In other news, my voice has pretty much gone now. If I really force it, I can just about get a squeaky whisper out. But even that takes a lot of work. My two surgeons are arguing about what to do next. One of them wants to change the tube to one that will hold my upper airway open as well. That way my voice will be restored.

But there are a lot of issues with changing this tube. For starters it will be a smaller tube, which means I would be more breathless than I am already. Considering I struggle with stairs and cant walk to far without nearly collapsing as it is, becoming more breathless is a bad idea. I would imagine it would probably mean using a wheelchair the majority of the time. And bear in mind that this would be for life, not just for a recovery period.

Then there is the issue of cleaning the tube. At the moment I can just take the inner tube out and clean it, when it gets blocked. I wouldnt be able to do this with the new tube, so I dont know how I would manage to clean it.

But on the other hand, I would have a voice.

I think I need to sit down with my family and both surgeons (hopefully when I have a voice) and discuss the options, pro's and con's and decide then. They have booked me in for surgery on the 20th January although im not sure what they intend to do then.

I am also booked in for more surgery on the 23rd December. My ENT surgeon is going to try and temporarily widen my airway so that I have a voice once again. If im lucky I will get christmas out of it then.

I have a lot to think about. I have a feeling 2010 is going to be another one of those bumpy years.

Please

I keep trying to work on this stupid assignment for networking. Not only is it one of my worst areas of computers, but it is taking me twice as long as it should due to having to research everything as I missed the lectures with being stuck in hospital. I dont understand half the concepts and its just becoming annoying. That and the fact that right now I have the concentration of a fish. Im hoping its the steroids that are making me like this. I get to stop them completely on Sunday. So we will see how i feel then and of course if my blood pressure comes down.

Mum went shopping on her way home from work today so I sorted my own dinner. I was in the living room when she came in and I had just finished my yoghurt I was having for desert. I started telling her that we forgot to put the baby tortoise to bed last night as he had dug down in the soil and we forgot to undig him and put him in the bed.

She then proceeded to lecture me on how little I have to do and I still cant manage to do the one thing I was suppossed to do right. That I never do anything for the torts (felt like saying yeah, Ive just been showering the baby twice a day and doing his eye drops, that I have never once seen you do!) Which then lead on to the usual lecture about how lazy I am and how little I do, (all this was while she was loudly unstacking the dishwasher and slamming pots and pans around) How little I did yesterday. I would have washed up, but she had already said she wanted to stack the dishwasher. And during the day I was working on my assignment. Just grrr.

I have really low self esteem as it is, but when mum starts putting me down, what little esteem is there just vanishes. I find myself fighting to hold in my tears. I could never cry in front of her, that would be a sign of weakness, it would let her know that she has won! the last time I lost control and cried in front of her was when we were on holiday and she was being awful to me and bethany. I felt so sorry for Bethany as she had never experienced anything like it before. And I started crying and couldnt stop. It went on for a good few hours, even when i got called out to eat tea. To which she told me I should be ashamed crying in front of Bethany. Gee thanks mum.

This song kinda sums up a lot of how I feel right now.


In more positive news, I went two whole days without using my nebuliser. I had to use it this afternoon after coughing my guts up and I should probably use it again now, but dont want to wake people up. But two days is good. Something must be improving. Even if I still cant breathe. Felt breathless all day today for no real reason. Dont feel blocked up, but just moving around making me feel like im lacking oxygen. Not a nice feeling. And yes I have tried walking slower but it far to hard. I cant physically make myself walk slower.