General update, Hospital, Tests, VCD

Plans plans and more plans!

It’s been a couple of weeks since I last posted and I’ve been pretty busy with life and health things so time for an update?!

First of all, Rome was amazing! Really busy, really really hot, really really really tiring but oh my goodness, it was all I imagined and so much more! Crossed a few things off the bucket list 😀

Had the time of my little life, and ate loads of great food!

I ended up taking about 3 weeks off work including the time I was in hospital so I had a bit of time to get over my admission, go to FSY training in Nottingham for the weekend then off to Roma. Life is a bit of a whirlwind lately. Lots going on with family and friends, and I’m glad that I’ve had some good days and great memories in amongst all the crazy parts too. I’ve been back working night shifts, and managed my first long day shift in over a year! It flew by, but I’m not making a habit of them!

Because of my last admission, I missed my second Speech and Language appointment. I was a bit annoyed with myself missing it as we seem to be getting a fair bit done in them. No new speech therapy, but a quick check over my technique, a few questions about when I do the exercises, how many times etc and thats the main point of the appointment over. But my speech therapist has been amazing recently. She used the appointments more as a way to coordinate all my care and plans. I was glad to make it to my third and last appointment. We went over things I had questioned in the first appointment, she had sorted everything and had all the answers and plans that we discussed, and she had more. I answered a few questions which the consultant had asked her so that they can discuss again in another MDT meeting before seeing me and planning what to do next. But we went through the list of things that were being thrown around as possibilities.

1 – same as what always happens at the end of a speech and language course, I need another nasendoscopy and SLT always book me onto the list were my consultant will be present too so we can discuss and move ahead without having to wait for weeks and weeks for a clinic appointment.

2 – they want to see how midazolam effects my vocal cords. Apparently when other people have IV midaz with VCD it usually tightens their vocal cords, making matters a whole lot worse. But for some reason it works for me. I told her it’s usually a whole load of midday before I fall asleep and it makes everything settle, sometimes for good, sometimes just for a little while and it flares back up again pretty soon after. So I may or may not be having midazolam during the nasendoscopy if we can set off my VCD and see what effects it has.

3 – she asked if I wake through the night and/or get VCD attacks during the night. I said yes straight away, when I’m really unwell with my VCD it always flares during the night which can lead people to think it could be my asthma. Up until very recently it has always been thought that VCD does not effect people during their sleep as you’re relaxed and so your vocal cords shouldn’t be strained or effected during this time. Apparently my consultant was really excited when he thought I may have nocturnal symptoms. I wasn’t so excited to find out that there is recent evidence that VCD can flare during sleep because I’ve always been told that the worst that could happen to me during an attack is that I will pass out from lack of oxygen and then because my body is essentially in sleep mode, everything relaxes and the VCD attack should be sorted and you are safe at least until you wake up and it flares again. If they now think it can happen during sleep, is that still the worst that can happen? Can they rely on the fact that if I were to pass out it would all sort itself out? I didn’t think of this during the appointment so I didn’t get to ask, but its on my list for August!

4 – Because I have night time symptoms they may send me for a sleep study. I don’t know what will happen there, I don’t always get symptoms of a night that I can tell, so not sure what the plan would be with this.

5 – I need a repeat 24hr pH test and the other thing I went to Salford for a couple of years ago. Preston will be doing the tests themselves so they want to repeat mine and see for themselves what goes on.

6 – I could be a guinea pig to trial CPAP for VCD. I would have it at night and then also for during an attack. Follow my usual steps of increasing exercises, heliox plus exercises, and then add in CPAP before my usual last step of hospital for midazolam. Apparently the idea is the pressure from the CPAP would force open my vocal cords when they’re closing over, or at least force in some air. I don’t know though, thats not how we have ever used it in work, but I’d be their guinea pig so if it doesn’t work then at least we tried.

So yeah, lots of things for them to be thinking about and I could end up doing all of the above or only a couple. We will see. But if we don’t trial all of them, I’ll always think that the one we missed could be the one to fix it all. I’m a try anything type of person, if it could help, and improve my quality of life then I am all for it, no harm in trying!

Anyway, I’m not long home from camping in Wales and my bed is calling my name!

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x

 

 

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4th July

Tomorrow marks 4 years since my asthma went crazy and i was first admitted to hospital for a week. I’ve been writing a post around the “anniversary mark” for a few years and I guess it’s kind of a sum up of the past 12 months and a hope for the future months. I would post tomorrow but I have other plans 😀 and I’ll be happily exploring Rome with my brother. Definite improvement from 4 years ago!

So what has happened this last year? Well the big one is I left my job. Hanging on to that job was something I was always so proud of and every year I’d just think, well at least I still have my job. Well not any more! But you know what…it’s been one of the best moves I’ve made. It hasn’t been plain sailing, it definitely did not go to plan, and it was a complete last minute decision before my options were chosen for me and I may have lost my career as well as just my job. I made the move and handed in my notice, literally days before I was going for a big meeting to find out my fate. I was unbelievably stressed out with everything, I was crying all the time, I wasn’t happy at all, and I just thought about losing my job constantly and thought I had no way out of the stress. The day I decided to give my notice I literally cried my way out of work, thinking there was no way I could work 8 weeks notice, so in my mind, that was the last time I would work on HDU, the thought of going back just to leave was not something I wanted to do. But after I wrote my notice and actually gave it in, I can’t explain the immense relief I felt knowing I had taken control, I had some time to try and sort something out, and I was probably going to be ok. I worked a lot of my notice, I was off sick at times still and I didn’t feel guilty once for calling up saying I wasn’t well. There was no worry about the consequences, I was leaving anyway, I could start caring about myself a bit more. I think it was around 2 weeks left of my notice when I worked my last shift. I was admitted to hospital, stayed in for about a week and then took the following week off to recover.

Instead of a permanent placement, I applied for the staff bank, and after a couple of weeks off I bit the bullet and booked myself some shifts in work. I’ve only worked in A&E for 3 shifts, and then all the other shifts I’ve had have been on my own ward! I worked for 5 weeks doing nights, earlies, lates, and I was doing good. It had been about 8 weeks since my last admission (double what I was previously getting out of hospital) and then I was admitted again. No big deal, I was out after 2 nights, and back into the swing of life.

8 weeks hospital free is a major improvement for me lately. It got to the point where I would approach 4 weeks and know my days of freedom were numbered! But I definitely think a reduction in stress, choosing my own shift patterns, and throwing myself back into a social life, enjoying time with my family and friends, really helped me to keep control for a lot longer.

So since last July I have had 9 admissions, 1 involved ITU and 4 have been to the NIV unit. I have had further tests in Preston and some new treatments, 2 courses of speech therapy and a plan to review soon and update what is going on. My asthma has been well controlled (everyone please touch wood for me!!!) and it has only played up occasionally with colds and hay fever.

I have also had some great times in the last 12 months. I cut my hair to make a wig, I raised a whole load of money in the process, I’ve baked more cakes, I’ve rekindled friendships, I travelled to Essex to see one of my best friends’ little boy be blessed, I’ve started up a new “hobby” and it’s going pretty well, I’ve took control of my life, I have been to FSY training and took myself completely out of my comfort zone! I’ve been out for meals with friends, I’ve been to the caravan 3 times already this season, I went kayaking on the lake and had a total mama mia moment, I was involved in a Christmas play, I’ve been to conventions with friends, I got lost in the woods, I went trampolining! I picked giant pumpkins with the kids, I made the most epic halloween costume (with the help of my fab sister!), I went to Harry Potter Studios and overall I’ve literally had the time of my life. How I managed to fit all that in and 9 hospital admissions, plus work, I’ll never know, but I did it.

I am so much happier with my life right now. I get to spend time with my family and enjoy good quality fun days out, I also get to be home to help out when I want to and when I’m needed. I can choose if I go to events or miss out and take shifts in work, I can choose my availability. I wouldn’t be here in this great place, excited to be off to Rome tomorrow without the help of my family. They are simply amazing and I’m so glad I get to be so much more involved now that I’m working bank shifts.

My plans for the next 12 months? Just keep swimming. Keep slowly plodding along getting longer and longer out of hospital, and enjoying more and more time out with friends and family. I get a new niece or nephew in December, I hated being so sick when Jessica was a baby, I ain’t doing it again for baby number 4! I want to knock another 3 goals off my bucket list (I usually say 2 a year but I am already going to do those in Rome this week!) Keep putting myself out there, get out of my comfort zone more often and just enjoy life as best as I can!

Thanks for all the support guys! Til next time! xxx