24 hour pH test — November 27, 2017

24 hour pH test

Oh my days! As if the last time I had an oesophageal manometry and 24 hour pH test I said it was nothing! (Last time it actually was fine!) this time…a whole different ball game! I had my first one done in Salford and the nurse in Preston said she had moved from there recently. She said the equipment at Preston is a little more “bulky” 😩😩😩 she was not lying! The oesophageal manometry has the bigger tube and this time she put it in to a certain point (my eyes watered like mad it was so uncomfortable!) and then she taped it in place and made me have sips of water every so often. None of the pulling it out a cm at a time like last time. Thank goodness though, because I managed to find a position to hold my head that stopped me wanting to throw up the whole time and I just took deep breaths and closed my eyes the whole time. Horrible. Stung even worse coming out! 

Then for the pH test she put in a smaller wire that monitors pH near the back of my throat and then at the end of the tube near my stomach. It’s all measuring fine so I’m guessing I don’t have reflux and will hopefully get to stop some of my meds finally! I can feel the wire constantly though! It’s quite sore at the back of my throat and it’s made eating a nightmare. Roll on 9.30am when I can get it out! I’ll be there waiting for the clinic to open I think to get it out in the morning 😂

So yeah…anyone who came across my last blog about the test before they went for there’s and were shocked to find it was worse than I had said…I’m in the same boat now! 😂 seriously though…I’m gonna suggest to Preston they invest in the same stuff as Salford! Although apparently the Preston equipment is better?! I don’t agree 👊🏼

  Roll on getting this out! 

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My lungs and airways are good…but my heart’s gone crazy?! — November 24, 2017

My lungs and airways are good…but my heart’s gone crazy?!

It’s been a couple of months since I updated on here I think! I’m terrible at posting on my blog this year, but then things got pretty stressful at the start of the year and real boring and monotonous for the second half…with my health anyway! I think my last post was about all the plans they had to treat my VCD, and then I went to my next appointment and my usual Speech Therapist wasn’t there and they back tracked on everything! So I got another appointment through with my usual Speech Therapist who gets things done, she said she was pretty annoyed they had arranged the last nasoendoscopy for the week she was on holiday, she looked at the results, and said she would speak to the consultant again and get everything back on track with the plans for new tests and treatments!

So…that brings me to pretty recently. I had a clinic appointment for my asthma and they are the people who first found out about my VCD and referred me on for the experts to have their input. Well, the asthma guys decided that maybe my inhalers could have been effecting my VCD all along – they put me on these inhalers when everything flared up over 4 years ago, and aside from a couple of months on a different inhaler because I was seen at a different hospital, I’ve been on the same inhaler for 4 years. And I use it every single day. My asthma was too bad for me ever to even be tempted to just not take my meds. So they thought a while back this could be the problem, and when I had my review most recently, they changed my inhaler! So I lost my cool pink Fostair inhaler and they have taken one of the parts of the inhaler out and put me onto QVAR, with the hopes that the added part in the Fostair was the whole cause of the problems, and maybe changing it might solve everything!

They also wrote to my GP to finally start “slowly increasing” my Amitriptyline dose from 50mg up to 150mg!! So I had to wait a couple of weeks but about 3 or so weeks ago my GP “ever so slowly” increased my dose from 50mg to 100mg. I lost days of my life! Honestly! The first time I took it I slept the whole of the next day! Then I took my evening meds again and was out for the count all over again! It took at least a week but I got myself from total zombie state to napping through the day to actually being able to function in society pretty well!

Right up until last week!

It’s winter, it’s not uncommon to feel run down in November when you have asthma, VCD, or when you just attract as many germs as I do! But hey, so far, I am still doing good! My breathing and VCD has not caused me to be admitted to hospital since September! If I make it into December then I’m sure it will be the longest I’ve managed to control my asthma and VCD for a long time. But I digress!

So a week ago, I picked up a long day shift in work. Hallelujah! I haven’t worked much this month so feeling a little run down was not gonna stop me! I went to work, was happy to see I was in with good people, and I knew the patients, bonus! A little into my day I felt like my heart was racing a bit, I didn’t completely ignore it and people knew my pulse was up but I just took it easy…er than normal and sat down between jobs. My day wasn’t difficult. After 6pm we had a number of jobs to do all at once, when we were behind the curtains with one patient, the next patient was already shouting for us to go help them. So me and one of the loveliest people I’ve worked with got on with it, weaving in and out of curtains, between visitors etc. and I just didn’t feel good at all. I started shaking, my head was pounding, my heart was racing so fast and I couldn’t catch my breath.

I still think I panicked. But hey, I’ve never felt like that in my life. I went into the staff room, openly admitted I didn’t feel good. They checked my obs and my heart rate was 160! For no reason. I agreed to everything anyone suggested and that is so not me. But this was completely alien to me, I’ve had fast heart rates after a tonne of medications, but my breathing is normally so bad I don’t notice so much. This was just odd. The ward put out a Medical Emergency call for me and nurses and doctors quickly came to see to me. I had an ECG, was put on a trolley (the shame!) and wheeled to A&E resus, apologising the whole way there thinking I was just having a panic attack or something. Literally everyone who came in to me, I couldn’t apologise enough, I felt like a time waster, but I didn’t feel great! I could speak in full sentences, even the resus staff agreed this was new to see me talking, cooperating and responding to everything. I had some bloods and was put on a monitor and literally spent the whole night trying to “chill myself out” and keep my heart rate down as low as I could get it. They told me I was waiting for a bed on the Heart Assessment Unit and that I couldn’t move from resus until a bed with heart monitoring was available.

I didn’t sleep much, but I did chill myself out eventually. My heart wasn’t agreeing with relaxing but I tried. We got on top of the massive headache I was getting, the nausea that that was causing, and I stayed in bed most of the time to try and let things settle. By morning, every time I moved my heart was still racing. I could get it into the 90s if I stayed completely still, but if i turned my head to check the monitor or moved my arm to check my phone, my heart was right back up there. It was crazy!

The doctor came to see me in the morning and said if my ECG had settled and my bloods were more normal that I could go home to rest. My ECG showed sinus tachycardia and prolonged QTc but it was more normal than the night before, and my potassium had come up from 2.8 to 3.4. Still not normal but I’d had a lot of potassium overnight and I was set on going home to eat a tonne of bananas! My magnesium was off too but that’s all related. And I was dehydrated still even after 4 litres of fluid IV overnight! I’m not a big drinker but that was crazy!

So I got home, I could feel my heart racing whenever I walked, I could feel it skipping around when I was sitting down or talking. It didn’t feel great but after a couple of days it’s gone. I quickly got fed up of bananas and drinking loads, and the vitamins I’ve started taking demo aren’t making any difference (I’ve got my first ever cold sore and mouth ulcers now too!)

I have an appointment in 2 weeks to go get a 24 hour ECG monitor on so they can see if anything is going on with my heart. The prolonged QTc they said will be caused by my increase in meds for my VCD so I don’t know what will happen there. It won’t be left too long though as I have an oesophageal manometry and 24hour pH test on Monday/Tuesday and a clinic appointment for VCD review two weeks after that. So hey. My VCD has been great *touch every bit of wood possible….and my head for good measure!* but maybe the meds sorting that out aren’t playing well with my heart. If that’s the case then I’m hoping there’s back up plans for VCD treatment and they don’t let it go back to what it was! So for now, 24hr pH monitor, 24hr ECG, back down to 50mg of Amitriptyline (and no sleep for Joey!) and we shall see where that leaves me before Christmas.

I can’t be sad about it though, in 12 days I’ll be an aunty to 4 little beauties when my sister has her fourth and final little bundle of crazy gorgeousness! I’m excited for a boy again! I’m used to baby girls around the family, another crazy quirky nephew is going to just be a tonne of fun!

Live life to the fullest everyone! Count every single one of your blessings, and then count them all again. Be grateful for your abilities, your body and your health…even if things don’t quite work how they’re meant to!