20 days and counting… — January 31, 2015

20 days and counting…

It’s been a long stay…hopefully only a couple more days and I’ll be out of here! But what have I learned this stay?

1- Wednesday is not a good day. Never plan for that to be a day I get out, because Monday and Tuesday have to happen first, and for some reason it also brought set backs that meant Wednesday was not the good day I always had it hyped up to be.

2- I have “little lungs” on my X-rays. I don’t get what this means but I have them…

3- I have a weak diaphragm. Probably couldn’t fight it’s way out of a paper bag, never mind help me during an asthma attack!

4- I don’t have an autoimmune disease, they tested, thank goodness I don’t!

5- 9 days in hospital is not as bad as it always seemed. Today I’m on day 20…now that is as bad as it seems!

6- Sometimes it’s the people you don’t think you’ll get along with that manage to brighten your stay and really stop the boredom setting in!

7- I have a new found determination to increase my activity once I’m out of here. Hopefully being more active will help control everything that is going on.

8- A simple virus was a lot more problematic than I thought it would be, and way harder to get rid of than it should have been!

I think that’ll do with the learning streak.

But it’s safe to say 20 days is a long long time. I’ve been well and then had more attacks a few times. I was admitted to ITU and HDU. I’ve had IV salbutamol 3 times. I’ve been on continual nebulisers, high flow oxygen, cardiac monitoring etc way too many times. I’ve been restricted to my bed space, and even worse just to my bed some days. It’s not been a simple admission, and once again I’ve gained more sympathy for my patients for when I’m back to work! I’ve decided I am still desperate to get back to work. I won’t risk my health but I know that this time they’ve done a lot more in the way of testing me to see what’s going on. They’ve added in another inhaler. 20 days isn’t the last…it’s going to add up to at least 22/23, just as I was hoping it wouldn’t. But hey ho what can I do? Just a few more days to sit through, another 10 or so nebs to take, 3 more fragmins (you should see the bruises!) 12ish more meds rounds, some more blood pressures then hopefully some TTOs and a discharge letter with a plan! 🙂 I can do this…

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Blogging… — January 25, 2015

Blogging…

I came across this picture today on pintrest:

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Somebody had put it on a bucket list board that they wanted to start blogging. The picture made me laugh a little. I’ve not blogged long, and I’ve tried to do it a few times before and failed, so maybe I’m doing it all wrong but when I blog it looks nothing like the picture! No bright room, no flowers, no posh PC…quite often it’s me, on my phone, sat in hospital or bed!

It made me wonder why I even blog. I didn’t think people would read any of what I had to say. Nothing I put on here is particularly important, and definitely not life changing for anyone. I didn’t start blogging to journal events, I have my journal, and though I touch on some of the same things it’s completely different. I didn’t start it to document my day to day life…if you have me on Facebook you know I do that through pictures.

I’d like to think I started to blog to raise some awareness, but not many people read my blog. That’s not my ultimate goal. I know it won’t ever reach a vast amount of people (almost 430 reads since I started is a major achievement for me, but not a lot).

I don’t blog to be heard, or liked, or understood either. I found it funny at first when I found out my mum and dad both read my blog and have talked about it. Sometimes I wish I could tell who the 2, 26 or 39 people who read my blog are that day. I can guess some when it says people from Canada or Czech Republic have read the entry, but not all are as obvious!

I guess I just blog for myself. It’s something for me to do. It gets my thoughts out in an easy way wherever I am. It’s free, it’s simple and I can put what I want on here. It’s definitely nothing special, but I really enjoy getting my thoughts out. I’ve never been one to speak about things, put attention and focus on me as a person and I hate it, I’m easily embarrassed and dread being the focus of people’s attention at times (honest!!). But give me some paper, or get me to put words out there on Facebook, email, letters, and now a blog, and I reach a comfort zone where I can talk pretty openly about whatever I feel like. This will never turn into a therapy session though, you’re safe from that!

I just love words. I love to read and I love to write. I always have and hopefully always will. And now that I have a somewhat unique experience to write about, I enjoy doing it. So for now, I believe I blog for my sanity, as a hobby, as a new found interest. I write this for me. And the fact people are interested and read what I have to say is great. I wonder if maybe I could just influence somebody, make a small difference in a life while I’m happily going along figuring out this blogging business!

I have no idea what’s going on… — January 22, 2015

I have no idea what’s going on…

So I’m pretty much back to square one (as my mum pointed out – I say square three, let’s be optimistic right?!)

I was doing well…that’s how all these posts start! I was taken off regular nebs and just on my inhalers for 24 hours. I was up and about, and I’m pretty sure I was ear marked to go home the next day. Then boom, cue lung strop.

It started with an irritating cough, then comes the chest tightness, and if it really gets going (and it did) then comes the wheeze. I get regular nebs, usually back to back. If they don’t help, then they call a doctor to review me. That’s all what happened last night. By this point I’m usually tiring, my heart rate will be sky high, my resps are at a ridiculously high rate, my head is pounding and I’m totally irritable.

So last night some nice doctors came to review me, a nurse prac took my blood gas (pain free this time!!) and they decided to give me IV steroids, IV magnesium and then started me back on IV salbutamol. Then to be on the safe side with my recent and prolonged histories they had me reviewed by ITU. A reg came down, and he seemed to know me although I didn’t recognise him.

Eventually after increasing the infusion quite a bit I just settled and managed to get some rest. I spent most of the day catching up. Thankfully it wasn’t nearly as bad as they have been, but that could be down to the quick acting of the doctor this time, or just the fact that even though my lungs are still playing up somewhat, I’m still getting better.

Let’s hope this is it now! I’m in over the weekend so they can wean the infusion and then finally get the tests sorted, have my consultant speak to Preston consultants and then home. Iv had enough of this admission! It’s time to go home and sleep in my own bed now!

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What actually happened then?! — January 17, 2015

What actually happened then?!

So what happened since I became an a&e breach statistic in the middle of an a&e crisis? I don’t know what the other post says about where I went next etc but I ended up on AMAU for 2 nights before transferring to a respiratory ward.
AMAU was it’s usual hectic self, really noisy and complete lack of sleep, so I was pretty glad to get out of there and into a side room for some peace! Even if it was the side room with the picture that haunts me!!

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Spent the day just relaxing and starting to feel a lot better, and spoke with the asthma nurse who said I would probably get to go home the following day as I was doing so well. My lungs had other ideas!

I woke up after a couple of hours sleep and just felt unable to breathe. I went through all the breathing exercises I’ve been given and tried my inhalers for a bit hoping I would just settle and be able to go home the next day as planned. After about an hour I caved and called the nurse for a nebuliser. She came straight in and stayed with me for a bit before calling the doctor to review me. (I later found out that she said I looked like I was struggling a bit but then just started to go blue and developed a really loud wheeze).

Doctors and nurse practitioners came and took blood gases, gave me loads of nebs, IV steroids and magnesium and at some point an ITU consultant managed to get into the room without me knowing! When I struggle to breathe all I want to do is lean forward, I usually sit over the edge of the bed and just look at the floor. I know who is in the room by their shoes…so I really have no idea who people are sometimes! Liz sat next to me on the bed and took my hand, I thought just to feel my pulse, but then she made it known it was her. They got another blood gas and left me on back to back nebs and oxygen, and Liz said she would be back to review me in half an hour, my gases were doing ok so I should have settled in that time.

Half an hour later she was back and another doctor took my blood gases again. My oxygen level had dropped quite dramatically (would you expect any less from me?!) and so they made the decision to take me to ITU.

I was taken there pretty fast, hooked up to monitors, had another arterial line inserted and was started on IV salbutamol and high flow oxygen straight away.

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I’ve never felt the need to hold someone’s hand when getting a line in before, I think the first time I had an art line someone held my hand but it didn’t hurt too bad, I probably would have managed without. But this time, thank goodness Charlotte decided to hold my hand. Art line from hell! It was horrible. Took almost an hour for it to be put in too. After that, it was pretty much a settled day in ITU. I was clearly the healthiest patient there. I always think I’m pretty ok with what goes on around me, I see patients like this a lot, but you forget how different it is to be a patient sat opposite somebody on a ventilator, next to somebody who is dying, in the same room as a family being told bad news. It’s not nice, and definitely something I need to remember when I’m back to nursing!

In the evening they decided I was doing well so they halved the rate of my IV salbutamol infusion with the hope of switching it off that night and getting me to the ward the next day. I’m not sure quite what time it was at when they reduced it, but when my family were visiting, I went from happily talking to them, to completely struggling for breath in about half an hour.

People think I cope so well with all of this, but if you were to see me in that time frame, between feeling fine and getting sick, you’d know I don’t! I get really agitated and quite mean. I start to ignore people when they talk to me, I give snappy answers when I eventually choose to listen to people, I can’t sit still, everything annoys me, and I’ll make it pretty clear to you that you’re annoying me too! I don’t mean it. Mum and I joke about it afterwards because we can see it as a signal for things going wrong, but I do turn into another person, and a horrible one at that!

Some friends came in to see me, it wasn’t perfect timing on anyone’s side really but I said to let them in. They’ve visited me loads before and I thought if they were turned away at ITU they’d think I was a lot worse than I was.

The salbutamol infusion was increased again and a few hours later I was more settled again. They left the infusion for the night to give me a break and in the morning they decided to send me to HDU. During the evening they attempted to wean the salbutamol again, another failed attempt and it was put back up and left at it’s usual rate for the night. I had a million blood tests taken, literally over 60mls of blood taken in one go! I hardly slept at all. The next day I took it pretty easy, slept on and off for most of the day. I found out I tested positive for some sort of respiratory virus that would be the cause of my flare ups, but as it’s a virus it’s only supportive treatment that will help, I just have to fight it off and let it run it’s course. The salbutamol was weaned slowly and successfully and so I went to just having nebs every 2 hours instead. All good progress!

I managed to sleep well last night, I didn’t even wake up most times they switched the neb and oxygen over, and I don’t think I ever felt the blood pressure cuff inflate every half an hour. So I’ve woke up feeling a lot more human today 🙂 I have no arterial line, they’ve stopped my fluids, and I can go to the ward when a bed is available. Onwards and upwards!

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Overwhelming support —

Overwhelming support

I don’t know how I got so lucky in life! Seriously!

First off, I’m sorry at how bad I’ve been updating people with this admission. There’ve been a couple of “sick days” were even just asking for my phone was too much effort. But after a particularly horrible day, to finally sit back and look at all the messages and texts that I’d got through the day actually made me cry! There were comments off people I don’t even know, supporting my family through a difficult time for them too.

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These are just some of the lovely messages I got…I somehow want to bottle the feeling of love that I felt Thursday when I finally got around to reading everything. You don’t know how great it made me feel. Thank you for everyone who wished me well, who has prayed or fasted or sent positive vibes and love etc. I know it helps more than I can imagine.

That time I became an A&E breach statistic… — January 13, 2015

That time I became an A&E breach statistic…

I spent 13 long hours in A&E yesterday! Normally the day I’m admitted to hospital flies by. They’re so busy with me that I don’t have time to stop and think.

Yesterday started that way, when I walked into the A&E department at 10.20am and was sent right through to majors without even getting paperwork. When I stood waiting for one of the nurses to sort out a majors bed, a doctor and another nurse looked really uneasy around me. They ended up taking my bag and sitting me in a HD cubicle in majors. They had me on the monitor, bloods sent, cannula in, blood gas taken, steroids given and on nebs faster than I’ve ever seen. Then came the usual treatment of regular nebs and IV magnesium. By midday I had a bed ready they were just waiting for me to settle first. After another hour when nothing was really working they came and told me I would be going into resus so they could keep a close eye on me.

Resus was pretty much the same, hooked up to monitors, reviewed by doctors, loads of nebs and blood gases. No improvement still, in fact my peak flow dropped by another 5-10% even with all the treatments. So I was reviewed by the ITU consultant. She said there were no beds initially in HDU so they would keep an eye on me and take me there if they got the chance to. I ended up waiting all day in resus because the A&E doctor wasn’t happy to move me into AMAU as I was. So at around 10pm I got another review from ITU who were by this point happy that I’d settled somewhat and I could be moved to a ward.

I got to AMAU at 11.30…over 13 hours after I first walked in. Longest A&E stay ever! I breached almost every target they had, but for my own good. It just shows that when you need it, A&E is patient focused not target driven. I think a few of those hours were literally just waiting for a decision to be made, and waiting did stress me out a little when you’re stuck in a room with so much noise and people shouting etc. but I survived it, I got here and I plan on getting out much faster than my last lot of admissions! (Obviously once I’m better!)

And it’s gone! — January 8, 2015

And it’s gone!

Thank goodness that’s out! I know I said it wasn’t that bad, and really it wasn’t. But it was irritating! I’m so glad I no longer have to write down times I start eating, what I have, and when I finish etc. My phone is full of pictures of times next to the food I started eating just so I could remember without carrying the paper round all the time. (Ok not completely full, I didn’t eat that much!!)

But today was pretty quick and completely painless. I got up with a sore throat, and had to get used to the feeling of the tube all over again. I’m definitely coming down with something too so my throat is raw and I’m coughing loads anyway, so that really didn’t help. I had breakfast then drove all the way to Salford again to get the tube out.

This time I was in and out in minutes. There was a woman in the waiting room about to get the tests started and she asked me how it had been. I told her that I personally didn’t find it too bad, stay relaxed and you’re fine, but that after a while your throat is sore and you just can’t get used to the tugging sensation if you have too big a mouthful of food!

I’m glad my little “friend” is gone. I’m glad I won’t need another one of those again. And I’m hoping they did find something that maybe they can do something about. I’ve never had reflux symptoms until they stopped the meds for this test, so it shows it’s really well controlled even if I do have it.

Now to wait for the results 🙂

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Another test to add to the list… — January 7, 2015

Another test to add to the list…

So my consultant in Preston decided to send me for an oesophageal manometry and a 24 hour pH test. They believe reflux could be playing a part in making my asthma bad. If they think that, I’ll do anything to see if they can find something to fix!

So today I went to Salford hospital, it took almost an hour to get there, ages to find a parking space and even longer to find the right place to go! I gave in my name then had to sit and wait (I got there a fair bit early just in case…) I saw two people come out with the ph tube taped to their face…I heard lots of coughing going on, and one lady made a comment about how unpleasant the whole thing had been :/ uh oh!!

So a man came and called me through, he explained who he was, what the tests were for, and what would happen. Then he asked me about symptoms. Now I’m sure they thought I was completely weird…because I don’t think I’ve had reflux symptoms in my life until this last week! I had to stop taking meds in preparation, since then I’ve felt bloated of an evening, had nausea after eating, and sometimes a bit of acidy reflux…nothing major though!

First test was the oesophageal manometry. I had a tube inserted through my nose down into my stomach…for the medical staff out there it was similar sizing to a rhyles tube, slightly bigger than the fine bore NGs we use to feed patients. It wasn’t actually bad at all going down, I just had to keep sipping water…no problem! When it was in, I had to lie down on a bed while the tube was hooked up to monitors and then it was slowly pulled out 1 cm at a time. Then at a certain point he stopped and made me swallow 10 mouthfuls of water, all spaced out. I just did what I was told, then he went back on pulling it out 1cm at a time til it was over and he took the whole thing out. That test, from lying down to having the tube right out took just over 15 minutes.

Straight after, he inserted a smaller tube into the same nostril, passed it down to a measurement he had got from the test, taped it to my cheek and neck and then explained the diary sheet I have to fill in.

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The tube is connected to a little box and I have to just record the times from the box when I eat or drink, write down what I have to eat or drink, and if I get any symptoms. I also have to record when I go to sleep and when I get up. The box also shows the pH at the end of the tube on the screen…so I can see what’s happening myself. My starting pH was 8.4.

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I literally sat watching the number when I was eating, the lowest I saw was 6.9 so I was thinking this was a waste of time and would rule out reflux. But then I lay down on the couch to watch some tv (I’m not feeling too great so still trying to take life easy!) and I felt a little bit nauseous, had a look at the box and voila!

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A pH of 2.8! Maybe there is something going on! We will see what happens! Hopefully it gets less annoying, it’s worsened an already sore throat, just because I can feel it pressing on the back of my throat. The tube also tugs when I talk, eat or swallow, and the whole thing is making my nose run more than it already was with a stupid cold. But hey…I can do this! I’m getting more experiences under my belt that I can sympathise with patients over! And maybe this may be a contributing factor with my asthma. Whatever happens, roll on 10.30am tomorrow when I have to go back and have it removed!

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New year…new start…new me?? — January 4, 2015

New year…new start…new me??

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So I really didn’t want to make any goals or challenge myself this year. I’ve come up with all sorts of reasons why I don’t need to make any New Years resolutions.

•why make goals I never keep?
•why set myself up to fail?
•why use a new year as a reason to change?
•I can’t lose weight I’m on steroids
•it’s a stupid idea
•I just don’t want to do it
•I only want one thing, and making it a goal won’t make it happen…

When it all boils down to it, the one thing I want out of 2015 is my health back. I don’t want to be in hospital every few weeks, I don’t want to have my asthma still be out of control, I don’t want a million hospital appointments, I don’t want it to effect my work and my life. How do I make that a goal? I don’t think I directly can.

But then we had a lesson today in church about goal setting (cue sighs and eye rolling from me!) But it was a really good lesson! It was kind of all about setting our lives in order, prioritising what we already do/should be doing and then seeing how that changes our lives and makes us better people. There were 3 categories (there were 4 but we skipped the last section which was called escape…more on that later!) First was Essential, second Necessary, and third was Nice to do. We talked about finding the balance between these three sections and sorting our lives into these three categories. We need all three sections, but we have to prioritise in the correct order.

I decided to change it up a bit to see how I could make my completely unachievable goal something to work on.

Essentials: I have to take medications, I have to monitor my condition daily (not just when I’m getting sick), I have to attend doctors appointments, hospital appointments etc.

Necessary: I have to seek help as soon as I need it (instead of being stubborn and trying to sort myself out like always!), I need to eat healthy, I need to increase my exercise tolerance, I need to find and avoid my triggers.

Nice to do: I need to get back to work, I need to get out more when I’m well, I want to be involved in research, I want to raise awareness, I want to help others, I need to take time for myself, I need to keep an asthma diary.

So I guess nice to do isn’t named right for this, but it is things I’d like to do, things that can help me in my life, but things I shouldn’t completely focus on. I’d say I’m more of the fourth section…escape. (Now I’ve looked through the talk this came from and can’t for the life of me find this, but I heard it at the end of the clip, I know I did!!) I want to do the first three sections, I do take my medications etc, but I want the outcome and I want it now! But then when I see things getting a little out of hand I wait, I bury my head in the sand, or carry on doing what I want to do, taking the steps I’m meant to but not slowing down and getting help.

So I guess what I want to do is make my health a priority this year. It’s not a goal, I can’t make it a goal to not go to hospital this year, that wouldn’t be the best idea if I really needed to!! I can’t make it a goal to control my asthma because we aren’t fully sure why it’s not controlled yet. I’m sure if there was an obvious way it would have already been suggested. But I can seek help earlier, I can slow down at the early warning signs, I can stop trying so desperately to always appear in control of life, and always wanting to be “normal”.

This year may not be my year, it may not be the year everything turns around and I’m healthy by December. But it’s the year I take control, it’s the year I’m sensible, and one year will be my year.

Until that year, I need to stop blaming the steroids and stop eating so much junk food 😉 that, I can make a goal!