Tuesday, 28 January 2014

Long update part 2

I spent the night on one of the orthopaedic wards and then moved to the very ward where all this started back in 2010.

Of course, this put me on edge from day one, however, I was pleased to see one of my friends was now sister! She was the only one who stuck up for me last time when they were flinging around the anorexia  accusations so that put me at ease for a while.

My blood results confirmed line sepsis and they wanted to remove my line. I asked them if I could transfer to Leeds so my own team could decide. Of course, it was the weekend so they were dealing with a bed manager and had no access to my team. They said they could sometimes save the line but I had Staph Aureus and it had to come out as soon as possible.

When they said that, I didn't expect them to remove it straight away since it's grafted in and I would need a general anaesthetic. 5 minutes later, in comes a nurse, with a trolley…. Oh my goodness…she told me she had come to remove my line! I asked how she intended to do that and she said she was just going to pull it out gently. AAAAARRRGGGGH! I sat and explained that it was grafted in and would need to be cut loose under anaesthetic.

Monday comes round and I still have my line and was hoping someone would finally speak to my team and at least ask for advice. During ward round they assured me they would get in touch and try to hurry the transfer so I could be put on the list for a new line. Later that day a young surgeon came in and told me they would be removing my line in theatre under local anaesthetic (quietly screaming inside). Once again I found myself having to justify my issues with locals, and again I got the usual response, "are you sure it doesn't work at all"…. YES!!!!! So he offers me sedation with the local….again AAAARRRGGGHHH! Sedation normally makes you drowsy, you still feel pain, and for me…it wears off very quickly.

After a long debate and a massive disapproving sigh he agreed to arrange the general, simply to get me to agree to have it done. It was glaringly obvious that he didn't think such a small procedure warranted a GA. Looking back now, I should have just told them not to do anything and wait till leeds had space for me, but hindsight is a wonderful thing! It was late afternoon when I finally got called to theatre and my mum had arrived to visit so she waited I'm my room.

When I got into the department I was met by an anaesthetist and the surgeon I had spoken to earlier. He didn't say much and left the consent form for the anaesthetist to deal with. She handed me the form and speedily read through it for me…. I was astounded to see I was expected to consent for the sedation and not the GA. I immediately raised the issue with her and explained that he had promised a GA. To which she told me that she would make sure I was properly sedated throughout and I wouldn't feel it. I had a really bad feeling but in that situation, when everyone is waiting for you and everything is set out, I didn't feel like I could refuse. So against my better judgement I agreed.

What a disaster that was! As per usual, they gave me a standard 2mg dose of midazolam, gave the local and started the procedure…5 minutes later, I'm practically jumping off the trolley as he tries to cut the line free. They all panicked, told me they had started so they had to finish and gave me more midazolam. This time I awoke to a great big yank on the line… there were two grafting cuffs on my line and he had presumed there would only be one, so he was trying to pull it out and wondering why it wouldn't budge! Needless to say, I was NOT impressed!

How are you supposed to carry on trusting these strangers to take care of you when you know full well they don't listen to your concerns and take them seriously. I was bullied into that procedure and it resulted in unnecessary pain and distress.

On my return to the ward, I was greeted by my mum. She told me my phone had rung 10 minutes after I had gone to theatre, she had answered it for me knowing it could be important. It was my GI in leeds… she had rung to tell me NOT to let them remove the line!!!



To be continued… Yes, sadly there's a whole lot more to follow! keep an eye out for part 3 x

Wednesday, 15 January 2014

Long update part 1

…Following on from my last post….better late than never!

After going over my last entry I can see that something was ready to give, and unfortunately…it did. As usual I did it in style and managed to end up with a string of battles to wade through both mentally and physically. I'm naming it the boomerang effect because it doesn't matter how far, or how many times I try and throw this off it always comes back and smacks me "upside the head!"

Bearing in mind that it's been several months since I last posted, I'm playing catch up with this one so forgive me if its a bit sketchy. I have so much to say that I don't think this post is going to make a great deal of sense unless I spend the next few days trying to organise my chain of thought. So, I'm just going to babble and hope for the best!

I was diddling along in my own little way, good days, bad days, you know the drill!

Then BANG something else comes along and undoes all the hard work I've put in to my emotional understanding of all this.

I think it's fair to say that I have a few minor trust issues when it comes to drs but I'm working on it. I found people I did trust to take the reigns so that I didn't feel like I always had to find the solution for myself.Two years ago, I made my hubby drive me 2hrs up to Durham in the middle of the night screaming in agony the whole way...why? Because I didn't trust my local A and E to take care of me!

I've come a long way since that night, I learnt to trust again and for the first time in years I felt safe. I had a plan, and a great support network... So much so that I felt I could stop worrying and get on with living with how things are. I switched gp's within my practice and it was the best thing I ever did. I feel like she is there for me and understands that if I phone it's because it's important... Not because I have some weird obsession for sitting in crowded waiting rooms!

So in many ways, things have changed for the better and I'm grateful for all the help and support I get.

However... Yes there's always a "but"....

I had reason to test my new found trust recently, it didn't go well and now I feel like I'm back at square one, wondering if I took my eye off the ball and let my guard down too much.

The "bang" moment was a night from hell. I was fine one minute, and the next I was on my way to the nearest A and E with severe abdo pain. I trusted that my local hospital would be ok since this was an acute problem and not related to my normal symptoms.

What happened next is beyond my comprehension.... After running a couple of basic tests they told me it was probably the start of an obstruction. The surgical reg went away to arrange admission for further investigation and came back to say...

We can't admit you because we can't administer TPN on the wards and you can't self administer because no one here is trained to use a Hickman line! We would have to put you on ITU and place a CVC line!


At that moment I lost my faith all over again. I told him that I wasn't going to stay under those terms because the whole thing was just ludicrous. What happened to non-malificence? This is where words fail me!

If they were suggesting unnecessary and dangerous procedures based on a minor training issue, then I think I'm safer caring for myself thank you very much! It doesn't stop there though, after telling them I would be going home they attempted to prescribe a few meds to cover me over the weekend until I could speak to my own team. So they offered me Octreotide for my "obstruction" and Naproxen for pain. They had all my notes, I made sure of that, so why were they trying to give me drugs like octreotide without even checking if there actually was an obstruction or not?  As for the naproxen, I hadn't had it before but they told me it was an anti inflammatory drug which needs to be taken with food? HELLO!!! I politely reminded them that this might be somewhat of a problem for someone who can't eat! Anyhow, they said if I put it through the jej tube it would be absolutely fine, so rather than be"awkward" I just agreed to take what they were offering so I could get out of there.

It was a rough weekend to say the least, of course I was more than sceptical about taking the new pills because there was no way on earth I wanted to feel any worse than I did already. However, when you have that much pain and have nothing else to ease it, you tend to just say f#@*  it I don't care if it kills me I will try anything!

Monday eventually came round and I finally get to speak to someone sensible! I arranged to go through to leeds the following day for blood tests and a consult. My GI debated all kinds of ideas as to the cause of it all, including the possibility of a gall stone. She decided to wait for my bloods to come back before deciding what to do.

I got a call the following day to say that my ALT's had elevated from 37 on Friday to 363 on the Tuesday. She asked me to arrange for my GP to repeat them on Friday to see if they were any better. They were much the same, no better, no worse but not right. She decided that since things were much the same it wasn't worth having the radiation needed to investigate. She asked me if I had been taking any different meds since friday. Of course the only new thing was the Naproxen, even though I had only had a couple of them before giving up on them because they didn't help. So the whole scenario was kind of written off as a really bad day made worse by the "help" of my local hospital... cheers guys! I asked my GI what she would suggest I do to avoid things like this happening in the future and she said, "don't go to that hospital."

...but it doesn't stop there....

This is where the confusion kicks in! In the midst of all this I had arranged an urgent appointment with my other GI since Leeds wanted a further opinion (i.e, what shall we do with this one?)

By the time I got over to see him I was feeling pretty rough. I was fairly confused by the whole thing and really just needed to curl up in a ball and shut the world out. Probably not the best day to be stirring up an emotive subject!

Anyhow, I tried to explain the whole scenario as best I could. Maybe not well enough, I'm not sure but something didn't communicate right because I left even more confused than I was before, and burst into floods of tears on the way out. This isn't like me at all, I just got so overwhelmed by the endless questions and never finding the solution.

The outcome was a recommendation of an MRI scan to rule out possible residual gallstones and a referral to the autonomic specialist that had been overlooked in the midst of everything. He was also keen that I try not to let my experiences at the local hospital prevent me going back in the future since it is the nearest hospital in times like that. I was still sceptical but agreed not to judge too harshly. I fully understand that this is a complicated issue made more so by the fact that so many different drs and hospital trusts are involved. However, at what point do you say enough is enough? I'm so tired of explaining over and over to new faces who are simply "passing through" my care, never fully understanding the how's, the why's or the impact this has on my whole world.

As you can probably gather, I really wasn't having the best time of it and one thing soon led to another. I can only presume that the added stress, fatigue and lack of sleep contributed to what happened next.

Once again, I started to feel unwell, but this time it was different. I started with a temperature in the early evening but passed it off as the start of a cold which had been doing the rounds with the kids. Obviously I know I need to be vigilant when it comes to temperatures so I rang the nurse on call for tpn. She told me to disconnect the feed but not to flush the line and go and get my bloods done to be on the safe side.  I flushed some paracetamol through my jej tube and set off to… the nearest hospital (yes I thought they could handle a blood test). I took my little thermometer with me so I could keep an eye on my temp if I had to wait a little while.

By the time I got there, my temperature had come down a little but I felt terrible. I explained what the problem was but I had a feeling it wasn't seen as urgent after going through triage with a temp of 37.5 which isn't considered a temperature at all these days, 38 is the marker and so I sat in the waiting room for a further 2 & 1/2 hours. I was so cold I had curled up in a ball next to hubby shaking like I was sat in a freezer. Every muscle in my body was aching and I was starting to wish we had just gone the extra distance to leeds.

When I finally got called through once again, it was pretty clear I was going to have to tell them what to look for as they didn't seem to be taking any of this seriously. I told them I had a central line and a temperature and needed bloods doing to check for line sepsis. His response astounded me. He said, "I can't see it being a line infection because it is very difficult for bugs to get inside the line!????" To which I politely explained (while screaming on the inside) that line sepsis is one of the most common complications for someone with a central line. I then told him (since they hadn't checked) that my temperature may have been ok on arrival but it was now 40.5 after paracetamol indicating a significant infection! This prompted a much more favourable response and they finally took some cultures and got me started on antibiotics.

I think that night was one of the longest in history and by morning I felt like I'd been hit by a truck and the driver had turned round for a second go just for good measure. Not the ideal time to have to explain my medical history to a bunch of strangers, but you're on your own in times like these and the only person who knows what you need…is you. It sounds awfully pig headed to say that at this point but the rest of this story will hopefully explain where my feelings come from.

to be continued…..