Getting My Head Around It

Needless to say, I have had some restless nights recently. I don't mean simple stuff like waking up and needing to do the simple stuff. Some nights I've been caught full on sleepwalking and sleep-cleaning. I am struggling to get my head around all of it. I mean, who wouldn't? Its hard knowing what we know but at the same time, I'm clinging on to something that someone can do. This can't be all there is. It just can't be. And I will be willing to try anything if it meant a life off the o2 leash and not having to face the hard part of my condition. I'm still struggling with the fact that this could (and should) have been taken seriously so much sooner had that "doctor" taken the time and effort to do more recent tests instead of making me feel like crap and like some kind of weirdo. I guess its all well and good when you get to walk away and not see what your arrogance and stupidity (taking me off 3/4 of my meds without testing is about as stupid as someone gets, especially when they didn't acknowledge the effect it had. Luckily I demanded a 2nd opinion because it was agreed that was a really bad move) means for someone.

I hope they take comfort and solace in that they don't have to watch me go through this. A life with lung failure is hard. Not to mention how hard this has hit my family. The fact that this could have been avoided doesn't give me solace or comfort. My asthma could have been managed better and much sooner had the right tests and care been given, meaning I wouldn't have developed scarring on the lungs (pulmonary fibrosis) which is complicated with infections. I don't know exactly what's going to happen now. Maybe one day we'll get a miracle and I'll get the gift of new lungs, ones that work properly. I'd take nothing for granted if that happened. But for allowing this, I think the people who should have done their jobs should be held accountable for that. Because right now, my family and I are going through hell and that's not right.

Nothing is going to fix how we feel either. My personal feelings here are the feeling of being cheated. I see people and they get to live long lives however they like and I'm on a knife edge. There have been times where I have honestly felt like this was the last time and how I got through was nothing short of amazing. I feel disappointed that the "doctor" who could and should have done something or safeguarded me failed. I'm angry because I feel so trapped. Powerless, because I can't put this right. What I'd like is a proper apology and for that "doctor" (inverted commas because doctors are supposed to help people, this guy didn't and he let me slip through the net and I've suffered because of it) to stop practising. If they did this once, how many others has he done this to? How many families have been destroyed because of lost loved ones because they weren't taken seriously or helped?

The Alex has a bad reputation and if this kind of thing is accepted then frankly they need to buck their ideas up. I want to know why this happened and why my previous complaints skirted around the fact that someone messed up, they didn't do the right tests when they should and missed a vital chance to help me in favour of outdated results (off outdated machines) which were complete contrast to what was presented to them. I also want to know why parts of my medical records "disappeared" over Christmas and I wonder if the fact that these were totally ignored or hidden away (probably because they'd have proven my complaint and made the hospital look bad) is trust policy? I just want the truth and for this practice to stop. I don't think mine is the only case where medical records are destroyed, changed or "misplaced" because of an inconvenient truth. Save the Alex? Save it from itself!

I was discharged in pretty much the same state I was admitted in, the only improvement was that they started getting the infection under control and because I showed a slight improvement, the treatment got withdrawn. Again. Its a week since then and the painful breathing is back and I'm starting to cough more. I have an appointment with the doctor this week so maybe they can recommend something other than "wait and see". I do have emergency antibiotics on hand but I'm going to get a sample before starting (preferably before my appointment) so we can see what we find. What we do know is one thing, I shouldn't have been discharged.

As for the complaint? Well I will get this exposed and sorted because mine is a life that has been severely affected by it and well, I don't want another family going through it.

Loves
Wendy xx

Justice?

The hardest thing I have ever done was to tell my family, particularly my mum, how dire the situation with my health is. I'm going to get through it, with their love and support as well as amazing friends, a boyfriend who loves me and of course my adopted brothers and sisters. My carers have been fantastic since I got out, my primary carer is someone I feel like I can talk to, he's old enough to be my dad but I think that helps too. I never realised before how much nurses and care workers have to do and how it must take a certain breed of person to do it.

Due to my condition, I am a frequent visitor to the Respiratory High Dependency ward, one of 2 respiratory wards at my local hospital. The staff on there are lovely and without them, I don't think I would have coped with the bleak news. The woman who did the lung function tests was lovely too, she remembered me from 10 years ago! We spent the time having a good old catch up and doing the actual tests. I don't know what I was expecting, perhaps I was desperate for "normal" results so that I could get back to normality and not have to face it. Knowing your condition can be daunting and knowing something, you can't just unknow.

The nurses all gave me comfort, a shoulder to cry on when I was sat there on the bed trying to take it in. I knew it wasn't great and I knew my lungs were getting to the point of not being able to heal anymore. All I could think was "why?" Its all anyone thinks when this kind of thing happens isn't it? I felt angry too. This is harder than anything I've ever had to contend with. The thing that annoys me most was that had it been dealt with better last year, perhaps by now I would have been better controlled but for what ever reason, the local consultant didn't seem to be all that interested in that, to be honest I don't understand it myself. I do want to task that part of it further but for that reason alone I'll not discuss that here. Not yet at least. I would love to name and shame the doctor whose lack of basic common sense and the trust that let me down. I would love it for them to experience what my day is like and then have them understand what they did by becoming fixated on how many meds I have and not testing to see what the extent of the damage is! I'm hoping that lessons will be learned and no family will have to get the huge shock mine has had again.

Because, let's be fair here. This doesn't just affect me. This has also affected my family, friends and everyone I hold close. They're going to have to see me get ill and they're all as powerless as I am about it all. I can't even begin to understand how my mum feels, she gave me life and did everything as I grew up, no mother should have to watch their kid suffer and have to face a very real prospect that one day, they may have to bury their child. So this isn't about just me, this is about all of us and knowing that it would have been prevented had the consultant acted sooner isn't really too much of a consolation prize. If anything I think it makes it worse and its just the tip of the iceberg, this kind of thing is happening all the time.

Asthma isn't being investigated properly across the country and its not taken seriously by doctors. The annoying thing is that 90% of asthma deaths could (and should) have been prevented had doctors taken it more seriously. 3 people die from asthma each day in the UK and its those families who are torn apart, and all for the arrogance and backwards thinking of doctors who are more interested in targets and saving NHS funds than helping people. I find it shocking and disturbing! Going in to hospital shouldn't feel like taking a huge gamble, you shouldn't be left wondering "if I go in, will I make it back out again?"

If it wasn't for the consultant's arrogance. And no. It wasn't Dr Brocklebank, he was one of the few who tried helping me at Christmas. We seem to have an understanding and we actually get to chat every so often. Its funny, I think that I have taught more doctors about brittle asthma than they have learned in books. I'm something of a living legend (or as Dr Brocklebank puts it, an expert at what I know) and people who hear my story and see my condition first hand are interested in what this means to someone who is young, vibrant and generally tries to make the best of it. I don't think I'm particularly strong or brave, I just don't have the time to waste in being down all the time. Not to say that I don't have days where it all piles up and I have to let it out. I do have days where I want to scream and scream until my breath is gone and I curl up breathing hard and tiredly.

I'm not going to stop here, I need to get justice for this or make a difference to save a life later on. If I can help one other person get a proper diagnosis and treatment, then I have done my part.

Loves
Wendy xx

Medical Limbo

I was reading an article recently (you can see it here), about the reasons people go to visit their GP and some of the more ridiculous reasons people go to the doctors. Some of them are just shocking and the unnecessary waste of resources and GP appointments to a system that is already heaving under the demand, especially with an ageing population, people living longer than they did 20-30 years ago and the health demands that throws up, and it means that sometimes, the people who really need an appointment end up either waiting for weeks or getting so sick (or sometimes so fed up) that they just attend A+E. Some of them are then kept in hospital for prolonged treatment which may not have even been needed had they accessed the appropriate care at the appropriate time.

At my GP surgery, a routine appointment can take up to 2 weeks to get. I'm lucky that I am under a "priority" scheme which means that if I call up the surgery and explain who I am and what I need to discuss, they will try and see me sooner than if I was anyone else. This idea of a priority scheme is a good one I believe because it means that people, like me, who have severe chronic illnesses which can (and often do) get worse very rapidly, can access the care they need quickly and intervene before things get too serious. The problem with me is that I have a habit of getting used to a certain level of "crap" that I sometimes forget that what I am experiencing isn't "normal" circumstances and it isn't a regular way to be.

I keep trying to think of why I do this to myself now. Before, there were reasons I think I never really got past them. I haven't been in that situation and the memories should be allowed now to fade. I won't get punished for seeking help. I am worthy of help. I need to stop convincing myself that I'm some kind of hypochondriac. Whenever I go to the doctors I always have a genuine problem and they always give me something to try and help that. I do think that sometimes the GP wants to hit me with a giant mallet with the word "NO!" on it whenever I start doubting myself. I spend most of my days and nights managing the routine of medications, monitoring, physio and other things, on TOP of having a life, doing "normal" things like going out and doing stuff. You know, fun stuff.

I had a lung function test done. It's interesting because before no one was sure what was happening to me and there had been times whether it was contested as to whether or not I was asthmatic (this was years ago mind, I think it was that degree of "hey, maybe it's not..." that fuelled a lot of my more reckless behaviour about the whole thing) and I think now it has hit home. It has kind of given me a mental bitch-slap to not take risks with no reason. I knew my lungs were struggling and I knew my function wasn't going to be upwards of 60% which it was less than 5 years ago (even more staggering that 10 years ago I was near 80% function) and now I have about 46% of my lungs functioning, off oxygen I can't keep decent saturations anymore and there are days when I am confined in a body which is slowly failing. My lungs are slowly failing and I am dying as a result. I find that hard to admit and take in to account. It scares me and I hate knowing that one day something is going to happen. The uncertainty. The fear. I feel cheated and knowing that there are people out there who made me miserable and it is cruel how they will get to go, live long lives and do everything they can and knowing I may not make it to 30. It doesn't seem fair.

I guess that seeing it all there, in black and white really hit me. Before there was a degree of "it could not be so bad" and possibly some cure on the horizon. I never realised how hard I clung to that. If there was another explanation, maybe there would be more we can do. But to be told that in no uncertain terms that there is no getting better now, all we can do is try and make it easier but there will never be a day when I don't need to take meds or be on oxygen. This is lung failure and until it gets too bad, all we can do is make the best I get (which isn't actually good at all) work. It is the hardest thing to return from an admission and only be ever so slightly less unwell and knowing that really there is little point on going at all because we have the barriers we have. Its surprising that as soon as I could, I let myself finally fall apart. Natt had to hold my limbs so I wouldn't harm myself because I felt so upset, angry and wanted to make a person suffer, but would that fix my suffering? No.

I don't know what is going to happen. I am on maximum therapy for my condition (step 6 ) and  there isn't really too much "wriggle room" as I am on everything they give. Well, I will see the expert again soon but it makes me worry because I don't actually know whether anyone can do much more for me. We'll have to wait, hope and see where we are when they get there. As for now, I'm in limbo, waiting to know what they can do, if anything.

I'll be alright, I'm just feeling a crash, right?

Loves

Wendy xx

Huh?!

Well, I'm back in hospital again. I am going to admit to you all (as well as publicly apologise to the sensible ones who would have had me here sooner) that I probably left it too long. Fear of a place broke through my normal, logical thinking. It was great over Christmas but I was still rattled by past experiences on medical wards, over Christmas I was in the surgical ward as it was the only place they had. I don't think that anyone would choose to be in hospital and I should definitely not choose to not go when I need to. Even if I feel scared or not safe.

So yeah, I'm sorry for worrying everyone.

I need to re-learn it. I need to learn when to intervene and what isn't normal. Or how far I can go before needing help. Maybe part of me forgets that even though I have the thins I need to manage, it isn't always going to be possible to fix at home. Does it scare me? Yes. I don't want to get to that point where I spend most of my day and night in a place where I really don't feel safe, comfortable or relaxed. I don't know why. I just feel like I can't let my guard down here and I end up trying to justify my staying out and hiding away so now one has to see how I'm feeling. Something I have always done. I need to work it out and maybe find out how to cope. I seem more settled tonight, everything is set up and ready with meds. Had a new IV put in because my one went pop and now pondering whether to watch a film or go to sleep, my IV has finished so I can't lie and watch it. I did watch a film but seeing as I only have what is on my hard drive now or Netflix so its a little limited. I mean there is plenty to watch, just not my usual massive stash of DVDs, Blu-Rays or on both hard drives. I think choice spoiled me! I kid obviously, I have enough to keep me occupied and not pulling my hair out from boredom, I have been in that situation before, nothing to do and couldn't sleep!

Its not been too bad as yet. No one has had any stupid ideas when it comes to my meds, there was a mix up at first but we sorted that quickly and the slight issue with my IV but that hasn't happened again.Things seem pretty balanced out for now and it looks like I may be here for a few days yet. I don't like the idea (who would?), but if it gave me the chance to get better then I have to just relax and let it happen around me. I think we need more in place for long term, as I seem to have "flares" of the infection regularly and if we could manage it better then I would do that. It's not that I have any personal issue here, its just that I would rather be at home with my own surroundings and relax than take up a bed here. The nurses seem to like me though because I do most of my stuff myself (apart from meds) and I don't constantly call them away from their work. I have been on wards where drug rounds for 6 have taken 2 hours because of patients spitting meds out, violent outbursts and a nurse being called away by someone who wants to be waited on hand and foot.

I think some people forget that a hospital isn't a hotel, care home or spa.  A lot of patients whose families are selfish enough to not want to allow them at home are left in a place where they have vulnerability to infection and subsequently end up dying in hospital with their dignity stripped away. The ones who want to be pampered should remember that they are in a ward with others and that they can't be pampered just because they want that. I do think though, there should be a place for younger people in the hospital as for someone who is young, it is a daunting, lonely place. I don't mind older people, the wealth of their life experience is amazing, but its hard for someone my age to feel less frightened or isolated. I'm always the youngest person in the ward which is weird because if I didn't have my phone or laptop, I think I would climb the walls by now.

I want to go home but the team are trying to work out what the long term plan is here. The problem is, we need to know what to do to keep this from happening over and over again, I'll finish my antibiotics tomorrow but I'm not really much better... seems like a load of stress over nothing really. I feel like we're putting a sticky plaster over a broken leg sometimes and the affect on my quality of life is shocking. It really is. The reality of my condition is that on my good days, I can walk around and do things carrying my oxygen around and then on the bad days, I feel like someone has beaten me all over my chest. Knowing there is a large possibility that the main issue is my asthma is as it is. Its hard to constantly manage my asthma because it is so varied between days. Some days I can be alright and doing what I have to. Others I will be out of it and sleepy. No one seems to know why this happens and what to do about it. I confess, its not exactly what I wanted for my life, but there is no use crying over spilled milk, it'll probably never be perfectly better. It sucks but I am ging to try and remain as positive as possible because if I do keep my chin up,maybe one day things will get better and maybe one day I can walk more than a short distance, but I suppose it is all about perspective isn't it?

I think my biggest worry is for the long term. What is the long term prognosis and is my future really going to be completely uncertain? Will I always be this way or will they manage to fix it or make this settle down? There really are no ways of finding out just what the long term effect of all this is going to have and I guess the uncertainty is what scares me the most. That and my fear that I will never be out of this place! I think I'll just have to take it each day at a time won't I?

Loves
Wendy xx