Asthma, Critical care, General update, HDU, ITU, Nurse

5 weeks and 1 day

So I made it home after 5 weeks and 1 day. Nothing compared to what some people go through, but my goodness, in comparison to my usual admissions which are about a week to 9 days long, even with ITU admissions, then it’s definitely been a long one.

I have mixed feelings about the admission, I definitely don’t look back on it with fondness, but it wasn’t all bad. And then there’s the experiences that fall into neither and both at the same time. I always like to end on a positive so I’ll leave them until last.

Bad points, thankfully there’s nothing too major in my list that I can think of. And believe me, I’ve been thinking for the last 6 weeks!

-I missed out on 5 weeks of my life.
-I have more scars, bruises, lumps, marks, sore bits.
-I came home on anticoagulation injections, for how long I’m not sure.
-I had another ITU admission and 2 further HDU admissions.
-I was unwell again in the first place.
-I had so many set backs that just kept lengthening my stay.
-I missed my family, and the kids sadly missed me too. Oliver and Charlotte keep hugging me and kissing me, and I’ve spent a lot of Jessica’s little life in hospital.
-ITU swabs done by the nurse and not by myself :/ enough said!
-Pressure area checks.

The things that don’t fit into anywhere, things that I didn’t enjoy, that were maybe embarrassing, or could have been, but things that when I think about them, they’ve effected me more than they probably should have and in ways I didn’t think they would. These pretty much involve more patient experiences that I really didn’t want. These experiences definitely stick in my memory, I’ve looked after people in my position and much, much worse and thought nothing of it, until I go through some of the things they experience. Why am I sharing these experiences? Because they made up a huge part of my admission, these moments stand out in my mind when I think back on those 5 weeks. And I know what it’s like to go through these experiences that could be horrible, embarrassing, something people dread. I’ve written about other experiences I’ve been through, they have helped people even when I didn’t think they would, and maybe what I went through won’t help people, but it’s the realisations they make me come to that help. I know how these things could go, and I go through it myself with amazing people looking after me and it’s not the massive deal I think it is, and I realise that nurses have the power to make things so much easier for patients, and I know how privileged we truly are.

HDU is never an easy stay at first, I’ve got to be pretty sick to be taken there, there’s no perks of the job involved, I don’t just get a spot on my ward with my friends for nothing unfortunately! This last HDU admission is up there with my first HDU stay, I wrote a little about it when I was still there. Now the morphine has worn off and I have a clearer head, and after speaking to people who saw me there, I remember more. It is still clouded by the feeling of pain, being completely uncomfortable, and really scared, but there are things that happened that I definitely remember.

On the first day, Sunday, I didn’t get out of bed until the night shift, or at least for most of the day. Unfortunately they didn’t want me to get dehydrated and were filling me full of fluids, so I had the horrible pleasure of finally having to use a bedpan. I’ve dreaded this since the first time I became seriously unwell. I’ve had the horrors of commodes before, and I hate to say, I’ve got used to it. But bedpans?! Seriously, I held on for hours, I just couldn’t admit I needed the loo when I knew I wasn’t going to be let out of the bed. Every horrible thought I’ve ever had about using a bedpan was running through my head…it’s just so undignified, it’s awkward to get on, it’s worse to get off…I’ve looked after those awkward patients who ended up in a soaked bed, and I didn’t want to go there. How would I face my colleagues after this?! I was not having a bedpan. Not on HDU! But I had to. And I have to say, thanks to the staff who had the unfortunate pleasure of sharing these moments with me, they kept it completely dignified, perhaps more so because they knew me, and it wasn’t as horrific as I thought.

Horrible realisation number 2…I could barely move. I had enough strength to pull myself onto my side to try and get comfortable using the bed rails, and then kept myself there by linking my arms through the bars and wedging pillows behind me. I could sit up by using the bed controls, but slipped down the bed all the time. And even when I did move, I was quickly out of breath and in pain. Imagine that for a moment, then add in how horrible I felt from literally fighting for every breath for hours. I was hot and horrible, I felt sick, and far from human. I always just want a good shower to feel a little better. However I hit the same problem as before. There’s no way I’m getting let out of the bed, and no way I’d last if they even tried to let me! Commence my first bed bath. I’d had the same thoughts of dread about the day I may need this too. I’ve been assisted with a wash before, but only helping to get things on or off because of IVs, washing my back, nothing major. This was suddenly a moment were I was almost completely dependant on help again. I’ve washed more people than I can remember, and I don’t remember anything about anyone, it’s just a part of my job. It’s just something you have to get out of the way in the morning before you can get on with the rest of your day. It gets your patient looking fresh and looked after, and it’s an opportunity to do your checks, wounds and sitting patients out if you need to. When you’re the person in the bed needing a wash though, it’s a whole lot more of an obstacle than that…well at least it sure was for me. I’ll give it to the person who helped me though, it was once again completely dignified.

Worst realisation of them all. I was still really breathless days later after my admission. I spent a whole day in the chair and ended up too tired to move the next day. Every time I got out of bed to use the commode (yey I was promoted!) or get in the chair I got really out of breath, my heart rate would suddenly speed up, my oxygen levels would drop, I’d become really tired. It was unsafe, and I was doing more harm than good, I really just needed rest. I was eventually convinced that a catheter would make life a whole lot easier for me, and I stopped being my usual stubborn self, partly because I was just too tired to carry on, and partly because I do trust the staff I work with. No details needed here, if I was embarrassed about needing a bedpan, or help with a wash, mortified probably doesn’t even come close enough to covering how I felt now. My levels of dread soared, but once again, the person who helped me through this made it as dignified as possible.

There are more experiences, I still hate commodes, I still dread that someone I know isn’t joking when they ask to check my pressure areas, I get panicky moving about in a gown (most undignified clothing ever!), I hate that I’m a patient and I can’t just read the reports or notes, I’ll never get used to arterial stabs, no matter what people say, sometimes some of them just hurt, and sometimes a lot, as do cannulas and bloods when you’ve been stabbed too many times to be able to count them all, it’s not always pain free and easy!

But everything was for my benefit. And I can’t thank the people enough who helped me during this admission. I think about the kind words and the encouragement from the people looking after me and the staff around me. I think of the nurse in ITU who held my hand while I got my art line put in. I think of the jokes people made to cheer me up when I looked like I might cry. I think of the fun we were able to have with the ward staff and other patients. I think of all the people who offered hugs and support just to see me through my day. I think of everyone who saw me on Sunday morning and still managed to smile and act normal around me. I think of the people who told me the truth, who admitted how unwell I looked. I think of the times people got help for me, the times I heard someone mutter “I’m getting the doctor” or “I don’t like seeing her like this”.

The positives…after that you may wonder how I’d find anything positive, but you know me, there’s always a silver lining.

-I spent 5 weeks with the consultants constantly wanting to get to the bottom of this, they finally didn’t want me to go home until I had answers.
-I had so many tests that may not have all resulted in anything, but they ruled out some serious health problems, they suggested other issues I may have.
-I had my medication changed.
-I finally saw my consultant in Preston.
-They found out how serious my VCD is, and just how big a role it is playing in all of this.
-I met people who changed my perspective on life, I actually made friends.
-I witnessed a massive outpouring of love and concern for myself and my family. I’ve never been the focus of so many prayers, thoughts, well wishes, concern etc. and I thank everyone from the bottom of my heart.
-After this, I’ve hopefully got my life back.

Once again I spent most of my time wondering what I could learn from this experience. I had people message me the nicest things about how I’ve helped them learn patience, how to face trials with a smile, how to stay positive. And this time, for the first time, I realised (other than patience which I had a small problem with at the last hurdle!) that they weren’t my lessons to learn. Somehow I’m just one of those people that can go through something and still come out the other side smiling. I know it’s because of the love and support I have from so many people, it’s because of my amazing friends, both near and far, it’s because of my wonderful family. I’ve always just had an appreciation of still being here, I have some serious health issues but I’m still alive and happy and for the most part healthy! I’m not completely reliant on somebody else for anything. I have wonderful memories and I have things to look forward to. I have great life experiences as well as these horrible ones I go through!

I definitely think that what I’ve been through will help me when I finally get myself thrown back into the working world! I can easily put myself into my patients’ positions when I’ve actually been there before. People may not have the same feelings as I did, but there may be that one person who does, and perhaps I can help them.

What I think I learned a lot more than usual this time is to let go, to let others help me when I need it. To admit when I can’t do something alone or at all. To accept help willingly and to not struggle along unnecessarily because I may be doing more harm than good. I’m a very independent person, I’m strong willed and I can cope with a lot on my own. That doesn’t need to change necessarily, but admitting I need help has always been a struggle. And maybe now I don’t see it as a sign of weakness, but more a sign of strength, then maybe I’ll accept and ask for help more willingly. The times I needed help during my admission when I didn’t accept it or didn’t ask, I dragged out the situation a whole lot longer until I finally accepted help and the problem was solved. I could make myself more unwell struggling on, but getting the help gave me the rest I needed to build up my strength and get better. In life, carrying on as if nothing is wrong and not asking for help can be damaging. Or struggling along when people can clearly see you’re struggling, and not accepting help, is just as bad.

So that’s what has been spinning around in my head during and after my admission. A huge mixture of emotions but most prominently gratitude. Gratitude for the doctors who investigated so many different things and finally found some answers. Gratitude for the love and care shown to me by the nurses, my friends, and for the dignified way they helped me through everything. Gratitude for the encouragement and love from my friends, in person, through messages, gifts, cards, thoughts. Gratitude for people who helped my family, even people I don’t know who offered encouragement to me and my family while they faced their own problems too as they carried on with life whilst mine was on hold. Gratitude for the visits that helped me get through my days and weeks. Gratitude for the prayers and outpouring of love that were most definitely felt.

I hope to never have to go through another long admission, but if I do, I know I can do it. Here’s hoping this is the start of me getting my life back. And here’s to me enjoying every single day I face from here on in!

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Asthma, General update, Hospital, VCD

Still here

Well I thought I blogged sometimes to keep me sane through all of this so this is definitely a sanity entry.

Not getting home hit me hard today, and I cried for the second time this admission. I don’t usually cry at all about my asthma or VCD or admissions or anything. Not even when I’m panicking or being sent to ITU.

I cried once before in A&E over the summer, the doctors weren’t actually doing anything. It was the admission I ended up in ITU for the first time. I had been to A&E enough times to know the drill, but I was just getting nebulisers this time and didn’t even have a blood gas taken. The doctor didn’t know what he was doing and openly admitted it that he wasn’t sure what to do with me but they would probably send me home. I knew I was getting worse and nobody else had seen to me and I just cried to my mum that I couldn’t go on like this with my life. It all felt too much. Eventually they went along with the usual plan and sent me to AMAU where I slowly deteriorated and the rest is all in another blog, I’ll let you read that if you want to!

The first time I cried this admission was when the kids left at the end of visiting. Charlotte didn’t want to leave me. Oliver was quite happy he had seen me, I was ok, he could go. Charlotte is my little best friend. We have a lot of boys in our house and so whenever she came round to our house when she was younger, if the boys were mean to her she would come in Aunty Jo’s room and I would spoil her a bit. She often asks me “are you my friend Aunty Jo?” To which I always reply “best friends Charlotte!” So when she didn’t want to leave me, and the fact it had been a month since I’d seen them, I got upset seeing her sad. Not in front of her of course! I could hold it back until she left the room!

This time, I’ve just cried to the doctor, I cried to the nurse, I cried whenever people asked me was I ok, whenever people have text or facebooked me I cried, I called my mum and cried, Cal called, I cried.

#IThinkImOverEmotionalRightNow

Normally this wouldn’t get to me. But it’s been so long, and they told me yesterday I would be home today, they told me Tuesday I would be out by the weekend, I was told about 3 times in Liverpool royal I would be going home the next day. I think people need to stop telling me when I can go home until they know for sure. I had my hopes up, I’m sat here dressed!! And for it to be something so simple as they can’t get the Heliox sorted today is so annoying. They knew on Tuesday I needed Heliox at home, why wasn’t anything started then?

Totally soul destroying just waiting around. And I know it’s the weekend so absolutely nothing will be done for the next two days. I’ll still be in the exact same position as I’m in today. Not even a slight step closer to home.

I’m sorry to everyone who reads this, sorry for not staying positive. I know it’s “only 4 more days” but the last leg of the race is always the hardest. It’s the point I need to push myself the most to just keep going. And I thought I was done, I thought my wait was over.

Oh well, now I’ve got this all out I can carry on regardless. I’ll get on with it, and I’ll more than likely do it with a smile. On the plus side my mum is bringing a DVD player and what sounds like the entirety of our DVD collection to keep me occupied! There’s only so many brain training puzzles I can do! My IQ must have increased by at least 20 points!! Time to start the Harry Potter marathon, or Big Bang theory, or something else that will tick me over until Tuesday! I may even set myself a challenge to see how many films I can watch by the time I leave!!

Thanks again for all the support. I really couldn’t do it without you all!

I’ve got this, I always have.

Asthma, General update, Hospital, Tests

Nasoendoscopy day!

So I had my nasoendoscopy today (where they put a camera up my nose and down past the back of my throat to just above my vocal cords). It was a nasoendoscopy with challenge where they planned to spray various different things to try and get my vocal cords to react. It turns out though that they only had to spray a small amount of aerosol to make them react pretty drastically.

My vocal cords closed right over which literally closes my throat as I breathe in. I don’t feel the effects until a few breaths later and by that point my chest starts to feel tight and my asthma comes into play so it becomes difficult to breathe out too.

All of this happened perfectly, the speech and language therapists and the consultant all looked way too excited, as did the nurse who was assisting. They treated me with heliox gas and salbutamol nebs and managed to reverse both effects.

Afterwards they showed me the recording and I could see clearly for myself when they had sprayed the aerosol and also when my asthma started to take effect by the way that my breathing pattern changed.

This is exactly what we hoped for. They could clearly see how quickly I react to triggers. And it was two different problems acting together to cause one dramatic attack. Now I just have to wait to see the consultant on his next ward round, see what they plan on doing with this information and hopefully get sent home.

I find it hard to get across how scary it actually is for this to happen. Not the nasoendoscopy, I can manage those easily now and don’t even have the local anaesthetic anymore. I find it hard to explain how simply terrifying it is not to be able to breathe.

I always try my hardest to stay calm, and I think I do a pretty good job most of the time. I keep talking to myself over and over in my head, telling myself I’ll be ok, just keep breathing, it’ll be ok, I’ve got through this before I can do it again. But there has been the odd time I’ve panicked. My attacks are coming on faster and worse. A lot worse. It really doesn’t take long anymore for me to go from ok, to my warning stage, to struggling, to full blown loss of control. And the more apparent that is becoming, and the more I realise what this means, the worse it is.

I think I gradually lost my coping mechanism this past month. Each set back came on stronger and faster during this admission. And each time it took me that bit longer to get over it. I don’t remember most of being admitted to HDU this time, my attack on the ward is something I don’t remember at all, the Sunday is just literally a memory of pain, discomfort and struggling. Monday is definitely clearer but I was still feeling pretty out of it.

Had I had to face another potential attack not knowing what can be done to help me, having the consultants completely stumped as to what is happening, and knowing myself that I’ve lost complete control over my attacks, I’d have been terrified. But this long, complicated admission has been worth it. The excitement of the professionals in the room today made me think they’re truly onto something. They aggravated my vocal cord dysfunction and my asthma today and I’m still sat here blogging about it the same day. I can still walk around, I stopped coughing after an hour or so, I can eat, drink, talk, laugh. All because they simply used another type of gas for me to breathe through the attack, so they could administer medications to me because despite my airways narrowing I was still in control and still breathing.

I have more tests and treatments to come as an outpatient, and I can’t have this gas long term. But after today my future is looking more positive. I can see myself getting on with life, moving past this, doing things I’ve wanted to do for so long but haven’t because of my asthma. I see myself becoming me again 🙂

Asthma, Critical care, General update, HDU

Don’t count your chickens before they’ve hatched?!

I did…and I shouldn’t have been so excited for Tuesday! It’s been and gone without me even fully being aware of it. Now I know it’s Thursday evening, and I came up here Saturday night/ Sunday morning. Here is HDU. Again.

So since Saturday night, I deteriorated on the ward again. I settled somewhat on the ward but not enough for them to leave me there. So the ITU doctor brought me to HDU just so they could keep a closer eye on me.

By Sunday morning I was no better, infact I don’t remember much, only how uncomfortable I felt. I couldn’t breathe, I couldn’t keep still, I had horrible pains in my chest and back, I felt sick and I hadn’t slept at all. I’d been trying to breathe for hours and hours. There was a clock directly above my bed, and all I remember is clocking the hours I’d been struggling for. 5 hours…6 hours…10 hours…14 hours…it felt like forever. But that’s how my day passed. My mum and dad were there all day, and when my sister and friends came to visit me I believe it was pretty amusing. Let’s just say the little concoction of drugs I was on was having a pleasant effect on me. My mum has told me some of the things I was saying…girls it wasn’t me speaking! It was most definitely the morphine!

Monday I thought I was feeling a little better. I sat out in the chair all day which I saw as progress. When we sit our patients out it’s because they’re getting better. It honestly just wore me out, but I was determined!

Tuesday I stayed in bed. There was no way I was getting out of bed for anything, I literally didn’t move. I was so tired. I was moved into the bay from out of the side room.

Wednesday l managed to sit out and feel good. I went for a CTPA to try and rule out a blood clot as the cause for the pain I was still getting. Fail. I have a blood clot on my lungs as well as everything else going on.

Asthma – check
Vocal cord dysfunction – check
Infection – check
Blood clot – CHECK?! As if!

Today, I was ready to transfer to Preston hospital. It didn’t happen but that’s alright. Another night here is fine by me.

So tomorrow is the day I’m heading to Preston. I’ll be kept in for a week or two. Hopefully no longer. I don’t know what they’ll do, how they’ll do it, when they’ll do it, but I do know why. To fix me. That’s the hope! I’ll have an anaesthetic transfer with a doctor, nurse and ODP in an ambulance. And then hopefully once I’m there I’ll get more answers and maybe an end to this horrible time I’ve been having.

Today marks day 25 in hospital, when I was determined not to make it past 19! It’ll be anything up to around 40 days by the time I get home. I feel battered and bruised. It’s been really difficult getting through it all and I’d lie if I said I had stayed positive the whole way through it. I’ve got more experiences under my belt for sure, and I definitely feel more sympathy for any future patients I get. I’ve had heaps of tests done, been stabbed with far too many needles, and had way too many set backs this admission. But what will happen is that I will go to Preston tomorrow. I will finally get to understand what is going on. And most important, I will finally get some answers that will hopefully sort me out.

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