East Surrey Admission, Scones, and Pseudomonas

East Surrey Admissions

My admission to East Surrey came as a bit of a blow. I'd been really well for a few months and it came out of the blue. I hadn't had a cold or chest infection.. so I wasn't really sure what was going on. Our visit to A&E was much more sedate thankfully. With a bit of encouragement from Sean I went before it got too bad (I always put it off in the vein hope I'll miraculously recover), and am glad to say that it was a sensible thing to do. It meant I turned up conscious anyway ha ha. Believe it or not that's not always the case. I avoided having a piece of metal drilled into my shin this time - which is always a bit of a Brucey bonus. Thankfully they did the logical thing and whacked a central line in (not before butchering my arms with a dozen or so needles). Which I have to say was a godsend. I spent a few days on a clinical decision ward, where I seemingly was completely forgotten about. And it wasn't until Sean nagged them relentlessly that they actually realized and saw that I'd slipped through the net. That same afternoon I was moved to the chest ward - funny that!
I was there for a good few days, nothing had really changed, I was no worse but no better. But not being able to even get to the bathroom on your own for lack of the ability to breathe does become somewhat of a pain in the A after a while. Anywho it all came to a head in an almighty crash I had. They took their sweet time to get a doctor to me when I was telling them, so the inevitable happened and it became a drama when they couldn't get my breathing under control. Unfortunately this happened in the small hours of the morning. They called my parents and Sean to brief them on the situation - at which point I was blissfully unconscious and in respiratory arrest. Sean was told to come as soon as possible as I was basically half dead. Bless him when he arrived he just saw a load of nurses and doctors stood by the desk with their heads down looking very solemn, he said his heart literally sank and he thought he hadn't made it in time. I'm glad to say and as you can see - I did survive, its just they had had to intervene with intensive care doctors and ventilation. As always I'm very glad not to have remembered the event itself and am just relieved that this is becoming a less common occurrence for me. Though (without being morbid) I cant help wondering just how many more of these respiratory events and interventions my body can take? I think I've more than tripled the standard 9 lives of a cat already. It turned out I was growing pseudomonas, which hadn't been detected and so I wasn't on the necessary treatments for it. Anyway, after another week or so I managed to talk my way to getting a discharge home... and now it all seems but a distant memory :)  

I got kinda down during that admission. Sean and my parents were a massive support. But I felt kind of abandoned by everyone else. My friend Emma worked all day, then drove a goof 60 miles in the evening to see me. That really perked me up. She's always a star, and she brought scones and clotted cream - winning!! 

ouch!

Emma and Scones

Portable O2 and Hickman Lines

Today I went to see my respiratory consultant. He has been my doctor for over 15 years so we know each other well. I've approached him many times before regarding a portable oxygen supply. He is always so reluctant because he says if I have access to it portably, I will be reluctant to go to hospital when my breathing is bad which can be life threatening. But with my recurrent emergency admissions it seems ever more pressing an issue. 

I took Sean with me. I was worried about this as I didn't want to over-emerse him in my medical world. I want him to get to know me for me before he has to confront all that's wrong with me. But it seemed important to have him there as not only support but also so as he could tell my doctor what (in his experience) happens to my breathing when I sleep. And of course what he witnessed on the day I had to go to Resus recently. It's difficult for me to recount those events as I was largely unconscious for the majority of it. 

My doctor did listen and to my surprise immediately agreed and filled in the application to get me some portable O2 albeit only a bottle to carry rather than the re-fillable liquid supply. But I was happy for that alone. It gives me a lot more freedom to be able to travel in the knowledge that it buys me time if I am any distance from a hospital. 

Another very important thing I wanted to discuss with him was the option of a permanent port of some kind. As you may or may not have read from my previous blog posts, I have absolutely no venous access any more, thanks to years of medical intervention. He was concerned, as they always are about the risks of this getting infected. And also said he was worried about the cosmetic appearance of it. I told him straight out, I was at a  point where cosmetic factors no longer matter to me. Just to have the relief of not being stabbed multiple times with a needle would make my hospital admission so much more bearable. Alas, he agreed but my relief was short lived as he said he would have to consult the big guns at the Royal Brompton before he could formally agree to go ahead with a Hickman line. My heart sank as soon as he said that. I know the Brompton will never agree to it. I expressed this to him but he seemed not to be listening any more. Perhaps I'd filled his concentration quota for the day.

I find it all so hard. I seem to spend my week, every week, attending medical appointments. Never getting anywhere. Always fighting for what I need. Never getting it. It's pretty soul destroying. I hope if nothing else, he will at least send off the O2 request for he promised he would. He's been known on numerous occasions in the past to forget, or change his mind at the eleventh hour. My philosophy has become:

'If you don't get your hopes up too high, you don't have so far to fall when they let you down'.

Gastro Surgeons

Today I attended the dreaded gastro-surgical clinic appointment up in London. The last few times I've been have been nothing short of a nightmare. I've been pushed from pillar to post for years now as no one wants to take responsibility for performing my surgery. This is because they have so many concerns about maintaining my airway during it. This drives me nuts because its not like I don't spend loads of time going under emergency anaesthetic as it is. And (although granted I know emergency anaesthesia is life of death), they seem to be able to get a team together in quick time to sort me out then. Why will no one sort this out?

Bottom line is... I've had GERD for some years now. Which in itself isn't earth shattering stuff. But because I have the tendency to aspirate my stomach contents into my lungs - leading to pneumonia's and all sorts of nasties, I need this operation called Nissens Fundoplication. Its a procedure where they essentially create a tightening around the sphincter of the stomach so that it doesn't reflux the stomach contents up. In most 'healthy people' the sphincter does its job, unless you are a premature baby and its not developed yet, or elderly and its just lost its ability to contract. But due to lots of different reasons mine doesn't do the job it should and consequently I need the surgery - ASAP.

Today's appointment was very different. After being told my doctor had left (they forgot to tell me!?)  I had to start all over again with a new doctor. I wasn't too impressed and thought 'here we go again, may as well go home and not bother'. I had a bit of a wait in clinic but eventually was seen by a doctor who was truly the most capable doctor I've seen in this area. He was keen to listen to all my concerns and really apologetic for all the hassle they'd caused - though it really wasn't his fault. He spent ages making phone calls and made real commitments for things to be done to help my case. I felt strangely reassured. I usually don't hold out much hope for these guys because more often than not I'm let down by false promises. But he seemed really keen to make some progress with me. He is sending me for a bravo capsule examination. They've previously tried to send me for this but it has been cancelled at the last minute as yet again 'no one wants to be responsible for protecting my airway while they do the investigation. So a specialist theatre slot needs to be arranged and a different hospital. He has put the wheels into motion so lets hope things start to happen from here. The dude even gave me his email address and said if I didn't hear in 2 weeks then I should email him directly. How many doctors say that?!!?! If I can get this surgery to go ahead my life will be better by far. No reflux = no/very few, minor aspirations which means my lungs will be much happier :)