Where I am at.

Why is it, that I can always think of loads that I want to say and it sounds so eloquent in my head. Yet I sit down in front of a computer, and my mind draws a blank.

I have always held in my mind, that my breathing was going to get fixed. That one of the major surgeries would eventually be the one that worked. That perhaps I wouldnt know it at first, but that I would get better. I have always had in my mind, that things were going to get messy, that I something could go drastically wrong and so I have been prepared for that. To prepare those close to me, for the possibility of my story not having the happy ever after fairy tale ending. And yet, inside, I have held it my mind that I one day I would be able to breathe.

The fashion at the moment seems to be to make a bucket list and whilst I have things that I would like to do, rather than it being a bucket list, it has been a when I can breathe list. It contains all kinds, from the fun things like kite surfing and marathons, to the simple things like living independently, graduating and holding down a job, not to mention goals, such as climbing the local cathedral tower and getting to the top of Monument in London.

But as time progresses, the chances of this get smaller and smaller. Each major surgery, leaves me feeling weaker and less able to breathe. The restrictions grow, the treatments become more and the future begins to look a little darker.

Right now, I am having surgery every 3 weeks. Only smaller ops, laser and dilation, but still regular admissions and regular damage. I still have a trach in, but my peak flows, sit around 110-150 lpm. When at home, I run an average of 2 hours of nebulised medications (6 different ones twice a day) and extra when I need it. I am attached to a hot air humidifier for about 9 hours a day and take around 30 tablets in addtion to daily injections. But, its not enough to stop the deterioration. These days, I have an almost permanent stridor that makes me feel rather self conscious.

I go to theatre on a Tuesday, by the sundayI begin to feel the restriction again and by the time I next go, even simple movement around a room leaves me feeling out of it with major headaches.

Between that, I have regular courses of antibioitcs, both in tablets and IVs when needed. The problem with IVs at the moment, is that I have very poor venous access. This means that I have to stay in hospital whilst on IVs, so they can keep my access open. A course of IVs is usually 2-3 weeks, but I go to theatre every 3 weeks. It makes things complicated.

At present, I am taking a course of antibiotics via tablets, given them straight after theatre as well as a heap of extra physio and nebs, but by the time I am off the tablets for a week, my lungs begin to kick off once again. I cant put the IVs off for very much longer.

Right now, I am running very low on options. They cant keep taking me to theatre every 3 weeks, but the airway wont stay open on its own. At some point, the doctors will need to admit defeat.

I have faced my own mortality on a number of occasions and whilst I am not scared of death, I am petrfied of dying. I remember moments of sitting in hospital, gasping for every breath, fighting to get the air in and just feeling pure terror. Tears flowing freely as I begged for help, all of this in hospital settings, were help is on hand and you can still have faith that the doctors will be able to correct things. But to face this with the stark reality that there is no help coming, that the fighting for each breath, is the easy bit, because the alternative is not breathing and not existing. That is what scares me. I dont want my family to have to comfort me, I need to be strong for them, especially if the end were to draw near. It would be my final act, to go out brave, a fighter to the end they would say. But the fear grips me, It reminds me of all the previous times and pretty soon, the fear bubble ups and I feel it sink its teeth into me like a snake that wont let go until it wins.

And that is what sits in my mind, it what always sits in my mind. It is what has spurred me on through the big ops, given me the kick to keep going even when the odds are against me. Fear, like that feeling when you go over a hill and your stomach takes a few seconds to catch up. It grips you and takes you down with it. Leaving you nothing but a moany sulky brat, when you long to be the grateful brave warrior.

I guess that I just wanted to put that out there. I have nothing to fear but fear itself, but this fear is a great one and not something that I can see myself getting over before I need to.

urgh

Well, I am still not breathing right, its getting kind of annoying now.
I am telling myself that it is nothing to worry about, I have been through this before and it does clear. I am happy enough with that.

The hard part is that, it has never been this server or this long lasting. Normally my peak flow drops to about 120 minimum for maybe 3 days. Right now, it has been about 5 days and my peak flow currently sits at a rather scary 80 l/m. Its frustrating as even the most simple tasks leave me panting and I am unable to finish my sentences in one breath. Its never been this low and I know I am only dealing with it, because my body has adjusted to crappy oxygen levels. All I seem to be doing is taking pain killers and either sleeping or struggling to stay awake.

I have to have a backup plan. My plan is, if things have not dramtically improved by Tuesday, then I will contact my surgeon and ask him for an emergency review on the wednesday.

I need something in my life other than illness and hospital. And I am still searching for something. But this latest flare up, is making my search that much harder.

Time, time is all I need at this point.

Stay

If things stay as they are right now, I think I could deal with that.
Today, pain has not been an issue. Slight ache this evening, but other than that, its like it was never there.
I have not taken a single pain killer in 24 hours.
Breathing is steady, I have not fully blocked up in the last day or so and on a good day, I can push 200 L/min on my peak flow.
I find I am still squeaking when I walk, but I am able to walk, which is great.
I have managed to save the funds to purchase a new nebuliser, cutting my treatment times drastically down and allowing my to travel once again, without having to make sure I am well enough to leave my equipment behind. I am just waiting on new stock with the company and then I should be able to get (hopfully within the next week or two)
Things right now, could be a hell of a lot worse.

At this stage, I know that there are no treatment options.
That any hospital admission would be to stop a decline rather than bring an improvement.
Right now, things are once again up to fate.
I am bidding my time until transplant becomes an option.

Stop playing

So, last week, I was beginning to get a little tiny bit hopeful. Once I started the long term anti biotics, I was coughing less and my peak flows remained steady for a few days, and then began to rise. The only change was the meds and so I began to feel a little bit hopeful thinking at last my body is playing along.

But, less than two weeks after starting them, I am once again coughing and my peak flows have nose dived once again.

I think numbers on peak flow dont really mean much in terms of how things effect me, so this kinda makes more sense. I should have a peak flow of about 450. I have no idea what that is like, my best is about 300 (right after surgery)

At 300, I am amazed, I can walk any speed and even on a mild incline without getting breathless. I can get to the top of a flight of steps and carry on walking at the top.

At 250 I notice only a tiny amount of breathlessness, usually when on an incline so I slow, or I notice at the top of a flight of steps that I am panting.

At 200, I have to slow a lot for an incline and still get breathless, I begin to slow down my pace and I have to stop to catch my breath at the top of a flight of stairs.

At 150, any walking has to be slow and I still pant. I generally stop half way up a flight of stairs and again at the top, where it takes about 4 minutes for my breathing to settle. I also generally switch to mainly whispering when I talk as it is not as exhausting. At this point, coughing fits become a lot harder as I struggle to get the air in after a cough. I can often be seen, standing with my legs crossed and an arm over my abdo to support it whilst leaning over to cough. This supports the area where my hernias are,to try to prevent reputure, but also means, I can generally catch myself.

At 120, All of the above, but with the added joy of headaches kicking in. If I ignore the headaches and keep pushing on, My limbs generally start to feel heavy and I have difficulty moving.

Right now, I am averaging between 130 and 160. But today, I had a major coughing fit whilst out. I leaned over the shopping trolley for support, but I could feel myself gasping to get the air in inbetween. I honestly thought I was going to black out.

My lungs are sore, well not really, I have pains in my chest, but I know the lungs have no nerves so its not the lungs,yet it dosnt feel muscular. There is still good air entry, it just feels kinda heavy and sore.

I think, I may build up the courage for a GP appointment soonish. Im going to ask about trying the inhaler form of one of my nebs, to see if it will help during a coughing fit. I dont know what else to do and I am not due in London till the end of January. I can probably make it till then, but it will mean a lot of sitting around and not much doing anything. You see the bad side of having a doctor so far away, is that I never actually get to talk to him. In the two years I have been under him, I have only been to 3 clinics and theaters are not the ideal place to set up plans.

This too shall pass, just wish my body would react normally, isntead of playing along for two weeks.

Annoyance

I painted my nails todays.
Well actully I painted them a couple of days ago with metallic silver. However, being the cool person that I am, I turned the silver into purple, from my hair. But alas, I had chipped it so today, I am rocking the Black and gold look.

I like this look.
Plus, its about the most I have done today.
Well technically thats not true, its still be radio clinic today. As of yet, mum isnt displaying any super powers. I was hoping she was going to learn to fly or move stuff with her mind, but alas, she is still the same mum. Albeit a mum coming down with a cold. Which gives me the opportunity to seek revenge and say, well you should have gotten your flu injection, like she usually spouts at me every year ha.

I have also been working on a card, but I threw it to one side in frustration. I am working in blue, and I just dont do blue on cards ha.

I think I am more just frustrated in general. my peak flows have taken another drop, the highest I can get them to today, after nebs is 200. I was coughing in the kitchen earlier and dad came to make sure I was ok, because, in his words ' I dont sound ok.' But again, coughing is relatively normal as is the restriction. The aching heavy feeling in the bottom of my lungs though, is a different story. But alas, I have clinic on Thursday, where I think, I may just beg him to fix me, or just like get rid of this pain. I wonder if its fluid building up again gah.

But even more annoying, is that my stomach refuses to let the lungs have all the attention. It must be close to 3 weeks now, since it behaved. And its getting tiring. I am alternating between having to run the loo, inc. several times a night, and then a couple of days, of being very gasy. I know im very classy with my description. Its just that I know I have to be careful to make sure my meds are all still being absorbed and rightfully, I should see a doc. But shoulds dont always happen and I hate talking tummy troubles with docs. I'm such a kid.

Anyway, off to watch some youtube junk and finish off apple tea before.

wake up

I think I may have given off a wrongful impression, either that or I write things my mind hasnt clicked with yet.

Right now, I am in a good place. Mood wise, health wise, family wise. 

Things are good, things are looking up.

I had Liver clinic on friday and whilst I often dont think about clinic, for some reason this one making me a little edgey. The last week or so, I have been having some stomach issues, which seem to be getting more frequent. I guess something in my mind, had perhaps linked it with Liver issues, I guess its something that will always be in my mind in some way. But, things are fine, everything looking good. Next month, I hit 9 years post transplant. 9 years is amazing, more than I could ever have asked for. And I am still so grateful for that. To my donor and to my surgeon for taking that risk. 

The longer you are transplanted, the more the risks alter and so I think I am past the most feared risk now, rejection. My body seems to like this liver, and although medication is still needed and always will be, the chance of me going into rejection are a lot slimmer now. The risks now, more so revolve around medication side effects and secondary problems. 

I am also well prepared this year and I have had my flu jab already. (Go me!) I didnt get around to it last year due to the whole pneumonia issue and being admitted. I cant afford to get sick this year, not that I could last year, but its done and out the way.

My culture results are back (I sent them off last Monday) and I have proteus in my lungs again/still. Not sure where we go from here, but seeing my lung doc on Thursday. Since getting back from London last time, I have been getting progressively worse chest wise. My coughing usually wakes me parents up, but I sleep through it, which has been true for the last week, but the last two nights, I have woken a few times. The bit that makes me anxious, is that, I really struggle right now to clear my chest. I have to kinda cough as much as I can, then stop and take a few shallow breathes, before a big breath to continue coughing. That coupled together with disturbed sleep, is making me tired and cranky. But this can all be fixed.

As for my throat, the lows are lower, but the highs are not dropping so quick. The new nebs, seem to be helping a lot. And although, I can often drop to 130 peak flow, with plenty of nebs and physio, I can, most the time, get it up to about 130.

Life is continuing. I have once again put my extender wire on my neb, meaning, that the 2 hours I often spend on it in the morning, I am able to move about and get dressed at the same time. Family issues seem to be settling too, which always makes me happy. Mums radiotherapy, seems to be going ok yeh, no new major dramas. 

Life, although it hasnt changed, feels good at the moment. I do feel like I am changing though and thats a good thing. Since I left nursing, I havtn really given much thought to going back. Well I have said I want to and I do, but I havnt really felt it, if that makes sense. Tonight, for the first time in forever, I realized, that I still feel the same way. Medicine still gives me that warm fuzzy feeling, I can still picture myself standing in scrubs, looking after somebody, making a difference. Deep down, I still want to do. Perhaps my mind blocked the urge out when it wasnt possible. Is it possible now? In answer, I dont know. I wouldnt want to put a patient at risk, however, I know they have disabled students, there must be ways around it. So, I couldnt run up and down a ward, nor do loads of long shifts. But, I could do some. I always wanted to go to ICU nursing. I could still monitor a patient, care for them, mix the drugs and give them safely. I could do most of it, if I could just get through training. 

I feel like something inside me is suddenly waking up. As if its been switched off for a long time and just booting in now. Its not just nursing, its boys and life and love and a million and one things all added together. I am ready to start my life, not hide around indoors. Things will pick up, things will improve and in the meantime, I can research and make sure I am ready.

cest le vie

Rachy passed away today. She was a fighter & and inspiration thats for sure. Breathe ease Rach. My thoughts are with her friends and family tonight. x (http://lungs-for-life.blogspot.com/)

I have discovered a way to get my hypertonic saline running easier without it leaving me in agony.
Usually, as my throat is being scraped every 4-6 weeks, it gets raw. I cough a lot, which irritates it more. So running hypertonic becomes a little painful. (think chapped/split lips and eat salt and vinegar crisp)

So anyway, tonight, I have had my humidifier on most of the evening and just left it on whilst running my nebs. oh it was heaven. As my throat is warm and moist, the salt isnt sticking, so im hoping its going into my lungs better. Weird feeling though, as I am blowing out through my mouth piece, the steam coming out was warm and so the plastic piece in my mouth was going warm.

The reason I am on my humidifier is my own fault. Last night, my body refused to shut down for sleep, so when my alarm went off at 7:30, the first thing that came to mind is, who hit me over the head with a hammer, closely followed with, who has been feeding my drugs as my vision was very wavy. After reassuring myself that no, I didnt go out last night, this cant be a hangover, my mind clicked, that it was in fact a migraine. I hate migraines. I have had them since I was about 5, though they started as stomach migraine. Managed to take some meds for it, but of course they take nearly an hour to kick in and this morning was not one I could delay or disrupt, today was about supporting mum.I managed the basic tasks like dressing, but the thought of nebbing when my head felt like it was splitting, was not a thought I could bare. It just wasnt an option.

So radiotherapy clinic went ok, though it is the first one so will take a while to hit in. But the staff seem nice enough so yeh.

By afternoon my head was still pounding, so I decided to nap it off. After about an hour, I remember half waking, but not being able to wake anymore. Thinking, something is not right, I cant breathe. After a scary few minutes, trying to wake up enough to get help, I managed to move to my other side, with aims of getting up, but quickly falling back into the abyss.

When Dad woke me later, I was breathing better than earlier, but still not great. I checked my peak flows and it was 110. I was like WTF!! Its been a long time since that low, were talking pre trach days, so god knows what it would have been when it woke me.

I have loads of treatments tonight and its back to 220, but just incase, I have made sure my emergency bells are still reachable.

Its just an odd feeling. Im not being all woe about this, I know its my own fault and I can take it in my stride, its just a little scare, to keep me on my toes. But it is annoying, today, isnt about me. My parents dont need any of this, I need to be supporting my mum. I cant afford to get sick right now. And the thought of not seeing a doc for 3 months, makes me a little nervous.

But alas. Tomorrow is a new day, and we begin again. Tomorrow I will wake refreshed from a nice sleep. I have just changed my bed and I am looking froward to snuggling down.

good, bad, indifferent.

As the title suggests, this week has been a week of everything.

Today was Chemo clinic with my mum. They had to stop one of her chemo drugs on the last cycle, as it was causing damage to her heart. She was becoming increasingly breathless and not dealing with it well at all. so it became heart scans and medication and wait and see. Today she got the results of her latest heart scan and although the damage is not completely gone, it is getting a lot better fairly quickly. This is great sign. But it now means weighing up the options. The med that was giving her the most trouble, is called Herceptin, or more commonly that great new wonder drug, the one that has been the feature of many articles about postcode lottery due to its expense and a lot of places not offering it. She is meant to be on it for 12 months. So every 3 weeks, till August 2012.

We spoke with the doc today and she did some calculations at how much effect it will have. With the surgery, the chemo she has had and the radiotherapy, she sits at approx 68ish% chance of still being here in 10 years (Bear in mind that 10%ish in the other 32% died of other causes) To add this other drug, gives her roughly another 7% chance of still being here in 10 years. Now 7% is nothing to be knocked, I mean out of 100 people, thats 7 more alive. But, and this is my opionion no one elses, is 7% worth it, if it means for the next year, her life is on hold as she cant move about? Knowing my mum, I would say not.

I have noticed through this, how differnt she is from me in her ways of dealing with things. I tend to keep stuff in, protect others from the truth, and deal with things of my own accord. She likes to share with everyone, everyone knows how she is feeling, and if she feels rough, its not unusal for her to burst out crying along with slogans such as, I just want shooting, or why me. The way she was over the summer, to put her back to that for 9+ months, I dont think she would hack it. I think it would destroy her. Not to mention, all that time sitting, at her age, would be damn dangerous to her joints and her lungs. But, its not my descsion, and its not one I can partake in. She needs to make it herself. If she dosnt, then there is always the risk of blame and guilt if things go wrong. Plus how could you possibly say to someone, I dont think you should have a treatment that will potentially keep you alive.

So tomorrow, we begin radiotherapy. That is going to be 3 rounds of 5 days a time. So with the oncolgoist, mum has decided she will probably go back for a go on the chemo and see how it is, but we are going to leave off on it until the radio is finished. So stage 2, here we go.

hmm
As for me, im still coughing a fair bit, though the coughing fits have eased a little, but the stuff im coughing up, not good. My peak flows dropped to 200 yesterday, despite nebs. I have also coughed up a lot of hard crap.  Today, my peak flow jumped back to 250, yet I feel breathless, which dosnt add up.  So silly lungs need to start behaving. I wont gross you out with stomach issue crap, due to increased chest crap.

And, as for the last one, I dont know if I blogged about this, but I think I am becoming more accepting of my transplant and finally reaching a point of acception, the point where most other people reach soon after. Well anyway, I want to know more about my donor. I dont even know if it is possible, with it being so long ago. I mean I know nothing of them, age, sex, nothing.

The only place I can think to ask is my transplant centre, Leeds. However, I want to do this on my own, not with my parents, just something I think is more private to me right now. Well, next week I have Liver clinic. More has radiotherapy and my niece is off school. PERFECT! This means, mum will be happy to let me drive to Leeds with my niece. (she dosnt like me doing long drives on my own incase I have problems) And as she has clinic, she can stay home. Which gives me perfect opportunity. And then, I shall leave it to fate. If they can give me details, then so be it, if they cant, then I will know it is time to move on. I mean really, how long do they keep records of that stuff.

Yup, and so, sleep time, as I have to be up in 7 hours.

Frustrations

Despite my best efforts, my peak flows are once again dropping.
I am continuing with all of my nebs plus extras.
I have also been humidifying nightly.
In the past couple of days, they have dropped from 290 to 250.
That might not sound much, but believe me I can feel it.
To get 250, requires work. Right before a neb, it is pretty much 200 once again.
This is my first frustration.

My second one, is that my lungs seem to be enjoying plating up.
Right now, the bottom section of each is aching like mad.
I have really tried focusing on my physio, but it is not alievating it.
I have been coughing a lot.
Yesterday, I had to run into a shop while out and buy a cough medicine as I couldnt breathe for coughing.
I dont usually like to use cough medicine as if I am coughing it needs to come out.
I do however normally have a cough syrup on hand to ease the grating i get on my throat from coughing.
That wasnt enough yesterday.

Third.
I was told by London that they would see me for surgery again early december, in 6 weeks.
I have just recieved a clinic appointment for mid january, making it 3 months for out patients.
I really do feel like I am banging my head on the wall with them sometimes.

Fourth
I also got a letter to tell me that they wont pay one of my transport claims.
This is because you only get 3 months to claim them and it was outside of that.
The reason it was late?
I sent it to them, but it ended up at the sorting office and they were asked to collected, but didnt.
When I resent it, I explained all that, along with sending the original and letter from the sorting office as evidence.
They just returned the tickets with no explanation of evidence.

So I am having to use the painkillers a little longer.
But other than that, things are ok.
I have just gutted my first pumpkin of the season and made my own pumpkin soup with it.
I have never had pumpkin soup before, but it is very yummy.
I may have to buy more pumpkin as my torts like it as well.
These are my carvings from last year (and it was the first time I had ever carved them)

I want to make a fall display, so I have ideas for that running through my mind right now.
I dont know, I am just so in love with this seasons colours.
The rich dark oranges and browns.
Its a very under rated season.
I mean winter gets all the attention of Christmas.
And spring gets baby animals and easter.
Summer gets sun and beaches.
but nobody really decorates for Autumn.

I also got some very pretty Christmas papers yesterday that I cant wait to use.
I have a fair few projects in mind for them.
I have a few cards that I need to do this week to.
And I also need to format a computer, maybe even two.

So there is plenty that I can be doing.
And right now, that is what is keeping my mind active.

And for that I am glad.

still going

oh wow a day time post :)

Right now, I have that horrible feeling in my muscles of exhaustion. My brain feels a little groggy, like it wants to sleep some more, but for now, I think its time is had some awake time.

So from that you can gather that I am still breathing! yay.
And its great.
Ok, thats a lie, I think.
Its not great in the sense that its not like average joes breathing, for example walking and talking at the same time is still a problem, but it is great in the fact that it is better than when I had the trach in. I can even get though most of the day before the headaches crash in. And to have all that, with no tube hassel, well its pretty amazing to be honest.

Then obviously the million dollar question comes into play. Does that mean the last surgery worked/helped? Its a difficult one. I find it so hard to judge what is good and what is bad. Like i say my breathing is wonderful, but that is only compared to the crap I was used to when I was 70% blocked. It is better than just before I went for my last big op, but then, when I had the big one before it in August, things were even better to begin with. I was breathing great then, peak flows up in like 350, which is only classed as mildly obstructed.

Before the last big one, they were down to 200 after laser and 120 before. And now? Well, they vary between 200 and 250.  I dont even know if peak flow shows anything. I know that in asthmatic terms, anything below 250 for my height/weight/age would be classed as critical and would earn me a bed in A&E. But I know that my system has adjusted a lot to it.

I also know, that right now, my chest brewing something. Its always disheartening to catch a glimpse of fluorescent goo and knowing your body just produced that. What is more, I only finished a course of antibiotics yesterday. Least it is confined to my chest. And is a million times easier to handle than if I were trach'ed.

So all good news. As for the exhaustion, it seems a little unrelenting at the minute, but then I did push myself a little too much yesterday. Helped mum with the shopping then visited my sister. My niece got a rabbit for her birthday and it is just the cutest thing in the world. Lays in your arms like a baby so you can scratch its tummy.  We bought a lead for it, as their garden is very open, so we were hoping it could go out to play, but not be able to leave the garden. To put it simply, rabbits dont like leads ha.

I didnt even come online last night, instead, went straight to bed when I got home. Now that is odd for me. oh wells, nothing planned for today, thank heavens. And mum is naping on the couch. All is well in the world, until next week of course, when we begin again with the whole chemo round thing. fun fun fun. which is actually another point, which may even help thinking now. Monday, I have clinic with my thoracic surgeon, but Wednesday, I finally have my refferal with the chest dude. By Dude, I mean top consultanty person. So perhaps that may finally move things along, and help to get these annoying chest bugs to settle down and stop jumping about in my poor lungies.

Sleep needed

Tonight, I am so exhausted.
I know I say that a lot, but today it feels extreme.

Yesterday was the solicitors, which didnt go to bad, though I have a ton of work that I need to do with dates and appointments and such, fun times eh. Afterwards, I walked around town for a short while, picking up a few bits I needed, a couple of head bands and some leggings and such. I felt tired, but it was more of a sleepy cant wake up tired.

Then today, I went shopping with my mum. Again, I wasnt out that long. But I did have to run back to another shop to pick something up for my sis as we realised that the shop was going to close before we got back to it. But afterwards, I got in the car and it just kinda hit me. I just felt drained, like I had run a marathon or something. By the time I got home, I just wanted to collapse.

I stood in the kitchen to wash the tea dishes, and I just wanted to cry. My legs and arms feel like they are full of lead and I  feel like I havnt slept in a month. I ache and I am tired.

I dont think I can deny it any longer, my breathing is gradually getting worse again. I am at the point where slow flat walking is ok, but take it to normal speed walking or add a hill and I cant do it. I walk up the stairs at  my slow walking pace and I would guess it takes about 4-6 minutes to catch my breath once again. My peak flows are worse of a morning than an evening, but the difference between the two is getting less and less. I am averaging about 180 at the moment.

I have an appointment in London next Wednesday. I am hoping in the mean time, that my breathing does not drop much more. We have booked a hotel for the Tuesday night this time. Getting the 5am train was just too much last time, especially as mum had to get the 9pm train home and so was not getting in till midnight. Its a long day for anyone, I know I struggled with it. But more so than that, I dont want to put my mum through that. She is not young anymore and I stress her enough without adding more physical exhaustion.

Lucky Charing Cross has their own accommodation that they can rent you. Though the problem will arise more so if they decide to admit me. Mum will have necessities with her, so talking her into going home instead of staying will be a task. She wanted to stay last time, but I managed to talk her into going home as she didnt have her medication with her. Its not that I dont like having her nearby, but again its more stress on her, not to mention time off work and accommodation fees.

On that note, I am so so tired that I am going to curl up and sleep. ha, me in bed before 10, long time since I done that.

Normal

I have had an amazing weekend.
Nope, I didnt do anything huge, life changing or even that exciting. What I did was, be almost normal. I had a day that someone my age might have, I did things that I used to do. I paid for it afterwards, but I had the fond memories to go on with.

Thursday I picked my niece up. I wanted to steal my sisters photos, and I managed to do all that without her noticing me. Which is pretty good as not long ago, I could have coughed and panted to much to do anything in secrecy or even to have the energy to do it.

Friday, I scanned a lot of the photos and got them printed. I also did some shopping and had a movie night with Alison and my niece. Saturday I got up early. And it was early, it was like 7:30am!! And I took Alison to her Ice skating lesson. My niece and I both got on the Ice afterwards. I didnt do much last time I went skating as I just didnt have the puff to do it. I had to stop every half a lap to get my breath back. This time, I could get round at least 2 laps before needing to stop. I didnt do to much as my blades need sharpening and the rink was crowded, but I was pleased with what I did do.

I had a wander around the shops and took Alison home. Had a bit of an argument at home, which wasnt fun but oh well. Took my niece home and came home myself. Sunday the spoon theory really did come into play. Mum commented that I was breathing heavy again and I just felt so drained the entire day that I hardly moved.

Today, I still feel so drained, but I woke early for me this morning. I found myself sitting bolt upright at 10:30am gasping for breath. I ran some nebs and rested, but sat more upright. I checked my peak flows and they had suddenly dropped to 140. I was thinking oh no, not already. But after some nebs and moving about today, I seem to be breathing a little better. So I have everything crossed that I had either drained myself too much on Saturday or that I had slept with my mouth open and dried my throat out.

Remember a while ago, my surgeon here had applied for funding for me to get a humidifier to help ease the issues I was having with my trach? Well, I got response from the funding place on Friday. It only took 4 months!! Anyway, they have granted me the funding. I didnt know what to do at this point, as I dont have the trach anymore so I didnt know if I was still eligible. Then came the issue of, would it help now? and if it didnt, would that not be a waste of money if I still got it. I put it on my list of things to get sorted when I get a chance.

Today, the respiratory nurse phoned. She had the letter confirming the funding and wanted to clarify a few things. She said she had discussed it with my surgeon, who knows I dont have the trach, but given my current issues, the surgeon still thinks that I should get this equipment. That it might help with the issues I am now having. For example, if I ran it through the night, I shouldnt wake up needing to urgently neb all the time. His original hopes were that, if I had this equipment and slept with it on, it might help my breathing so much that I wouldnt need to neb during the day at all, and so I could get on with things easier. So apparently the medical engineers at the hospital are currently in discussion and meetings with the company that supplies them to discuss which one will be the best for me and how to get it and such. Its strange how much work goes into getting one piece of equipment.

I have the solicitors tomorrow, which I am dreading. Getting through that, especially without crying, will be a challenge. I did however, have to calculate all my hospital associated stuff. In the last 13 months, I have had 72 separate appointments, spent 142 days as an inpatient in hospital and been to theatre 16 times. No wonder this year seems to have vanished with nothing to show for it.

But, through all that, I am inspired. Greatly so. I stumbled across the blog of a lady who is currently on the heart transplant list due to cardiomyopathy (Which is generally when the muscles of the heart become weak) She had an internal defibrillator planted in her chest, which went off during her speech on her wedding night. Since then she has detoriated and now has, what is effectively an artificial heart, while she waits for transplant. She has to carry part this around, in a backpack style bag. Yesterday, she posted about what she has been up to. Andrea has been going to the GYM and participating in Yoga and pole dancing classes. WOW. I mean just wow. I cant even bring myself to go the gym with a working heart, never mind carrying equipment and whilst on the transplant list. Kudos to her!! I really hope she gets her call and soon. Her blog is here if you wish to read http://stayingtruetomyheart.blogspot.com/ )

Reverse

I hate that feeling of going backwards.

Once I got out of hospital, I began moving forwards, exercise, getting out, dong things.

But with each day that passes, I seem to be able to do a little bit less than the day before. The things that I do do, make me a little more breathless each day and take a little longer. 

Once again, I have gone from being able to get dressed in less than 5 minutes, without stopping, to having to sit between each item I put on. To not only getting breathless going up the stairs, but now down the stairs too.

I am a little grouchy today.I didnt sleep well. From about 6am this morning, I awoke every half hour gasping for breath. I was meant to take my sisters kids out today to give her a break. She text me early this morning to cancel, one of them has a cold, which I cant mix with at the moment. I dont think my system would handle a cold on top of this. So whilst, I am annoyed that I didnt get to see them or do fun things with them, I am also pleased, as I wasnt in the best condition this morning for being active. Mum came into see me at 10am and we agreed, I should try get some more sleep. So after running a couple of nebs, propping myself up and taking some meds, I managed to fall back asleep and not wake till after 1pm.

My peak flows had dropped again this morning to 170, its not a huge drop, 10%, but believe me I can feel it. Of a morning, my peak flows are 170 and of a night they are about 240. Considering it was only a week ago, I was hitting 300.

But I see my consultant on Wednesday, and hopefully it is something they can easily fix. Just another little bump in the road.

Lucky, I have friends that know that my social limits are lazing about watching films. 

I saw an old friend the other day. I went to college and uni with her. She picked me up, cooked me dinner and we generally lazed about in her living room watching American Psycho and some other random films. American psycho was good but had an odd ending. It was kinda bitter sweet. It was great seeing her and later when the kids finished school it was wonderful to see them. But by the time 3pm hit, I was struggling to focus on basic conversation and found myself saying huh? and what? a fair few times as I had just blanked during conversation. I also didnt have the energy I would have liked to play with the kids.

It was sweet, her eldest, has basically known me all his life. I used to pick him up every morning and take him to nursery. He always referred to me as Kim Car as he was always in my car or on day trips to see the squirrels or reindeers and such. He had his friend over for tea and his friend asked why I talked funny. He told his friend its because she has a poorly voice.

What wasnt so sweet was his friends dad picking the friend up. When I spoke he kinda burst out laughing and then stopped. I guess I do kinda sound like a drag queen.

Anyway, tickets for wednesday are booked. Bloody £150 *grumbles* and I have to be up at like 5am oh noes.

ack enough for tonight, time to go watch some medical drama haha.

Improvement!!! & scars

I have spent a small part of this week stressing. Not a lot of stressing, but it has been something that has been in the back of my mind. My breathing is great, dont get me wrong on that one, but it didnt feel as good as it felt a few days ago. I think when you have had breathing problems, you are more aware of it for a while after, always on the watch out for problems to arise. But I didnt want to stress over it and so pushed it out of my mind, though I have been watching my peak flows a couple of times a day to see how they were doing.

For my age and size, I would expect to get a peak flow of about 450 L/min. Before my breathing took a turn for the worst last year, my peak flows were about 250 and once I got the trach, they dropped to about 150. This week, they have been jumping around between 200 and 250!! Now that is amazing, it means that I am back to how I was before I dropped. Major achievement and no wonder I have been breathing better for it. I just did 30 mins on my wii fit and my peak flows jumped to 300! 300 is amazing, I have not had a number so high in years.

It also means that it was just me stressing about being more breathless and the feeling was probably just an adjustment thing. When you think about it, I didnt do any stairs or steps for 4 weeks and now I do them a couple of times a day, so I guess at times I am bound to feel exhausted getting to the top.

That being said, I still feel exhausted all the time and yet again fell asleep on the couch this afternoon for a further two hours. Once I awoke, I went to sit in a neighbours house for an hour. When I got back, I said I would set the table for tea and again a wave of exhaustion just hit me like a ton of bricks. I really struggled finding the energy to get up. This is something, I hope eases soon. I have a GP appointment on Thursday so I may mention it then.

Speaking of my Wii, I put a few of my favourite Wii fit games on today and did just over 30 mins in one go. The good bit about this? First attempt at some of my favourite sections and I knocked all my old scores off the top. So although I feel unfit, my ability must be better if I am able to beat my old scores without practice. Things are looking up.

In other news, my trach has now fully closed over. The scar is still pretty ugly, but it will heal and such.
This is my trach scar on my neck now.

Ok, the image is a bit crap, but you can see the old inscsion, just on the bottom, from November and then this years along the top. The big long red bit in the middle is from the tube migratting upwards. My neck is still pretty swollen and an odd shape, but that will settle. There is also still some air escaping when I cough into the tissue, but it is a lot less than it was and hopefully it will continue to heal itself from outside in.

This is the scar from my rib cartilage

It is a lot smaller than I was expecting and it has healed so well in a short space of time. However, this is probably the most painful part of the surgery. It ached for a while and being big busted, meant that however I lay, there was a weight dragging on it. Whilst in the hospital, I lived wearing vest tops with built in support, however, since being home, I have gone back into underwired bras, with no problem at all. Lucky its in a place that dosnt rub. Hardly any pain from it now, just a little ache of a night when I first lie down.

The skin graft site is also healing well. Just a little red square at this point that fades some every day, no pain from it at all.

Speaking of pain, I have developed major tooth ache. Its absolutely agony. I think I am going to have to bite the bullet soon and go to a dentist. Surgery and inscsions and hospital stays dont bother me at all and I can face them with just a mild apprehension, however, mention dentists and I will turn into a quibbling mess in the corner. I know a lot of people have a fear of the dentist, but I dont have many fears so this one is hard for me.  Its strange as the dentist never used to bother me at. Then when I was a teenager, I got an infection in a toth and they had to take it out. It hurt so much getting it out and I could feel them pulling it. When I got home, I felt so rough I went to bed and awoke with myself and my pillow covered in blood. Probably wouldnt bother me now, but at the time it freaked me out pretty bad.

I got up the courage to go a few years back and they started talking about a root canal. Now I had no idea what it was, but I remembered them talking drills and such in Finding Nemo, so at  the point I panicked and didnt go back. Now the very same tooth is complaining. owie =[

Yesterday was a bad day, I was so tired I didnt even get dressed. So I think its time to start putting in some guidelines of my own once again to get myself back on track. The first one is that I am going to make sure I am at least washed, dressed and hair brushed every day even if I am not going out. I also think one for me to start working on is to get to bed earlier. I might do a couple of days where I force myself to bed by 1am, then move it to midnight. I may even set a lock on my computer to shut itself off at midnight.

I need to work on getting my weight down and work on my fitness, so I may try to bring in a few new goals next week.