My 28th Birthday and a list

This is my first blog of 2013, I can't believe its almost 7 months since I last posted!! So much to tell. Not sure I'll fit it into one blog though, that might become a bit of a laborious read.. I wouldn't be cruel enough to do that, not today anyway :)
So first things first.... erm... I should probably put a 'little' list of things I should have blogged about but haven't had the time to .. in small bite size chunks, just to keep you in the loop .. (bare with me, I'm working through my diary to jog my memory)

• Acupuncture : My  pain consultant offered me acupuncture as a form of pain relief, once a week. I've been having sessions now for about 6 months. It's been great, made a massive difference to me and has really helped me sleep. Effects arent as long lasting as hoped though. Back to the drawing board.
• Ralph's 6th Birthday - my boy is middle aged!
• Korean Restaurant - Went out with a bunch of friends to a Korean restaurant in New Malden. Was certainly an experience. Was awesome seeing the food being cooked at your table. I had my first taste of Kimchi, not sure I'll be eating it again - Though the fried egg in the middle was nice 
• My 28th Birthday - will actually write something properly on this because it was pretty cool.. keep reading and I'll update in a bit.
• East Surrey Admission - A two weeker, including a stay in ITU - nothing out of the ordinary for me but pretty unpleasant as you'd expect. 
• Barcelona Hen Weekend
• Sean's 28th Birthday 
• Endoscopy - definitely need to expand on what happened with that!!
• Ralph at the vets - wow - that got expensive!
• Great Aunts 90th birthday bash - Liverpool
• Croatia holidays
• Afternoon Tea in London with Tor
• Quilting lessons
• Hearing Tests

So I'll start with ...

My 28th Birthday..

It was my first birthday spent with Sean, and he spoilt me rotten. I was woken up by being covered in birthday balloons and to the sound of birthday banners being hung. I didn't feel  melancholic about this years birthday. I think I previously mentioned in a blog that on my 27th I suddenly had this realization that I was the wrong end of 20 and felt like I hadn't really achieved a lot. But this birthday wasn't really like that, I felt old for sure but felt a lot more positive about things. And having Sean there made things even better. He bought me a really beautiful necklace with matching earrings - I don't think I've taken it off since.We also went to Jamie Oliver's restaurant 'Fifteen' (you may remember it from when he did his first show with all the disadvantaged adolescents he took on to given them a skill). Well he's still doing the project even though we don't hear much about it these days. Food was pretty awesome. 

Then a couple of days later we went to a cooking lesson in the Jamie Oliver cookery school (Are you noticing a trend here). Sean and I are massive foodies - you may have noticed from our ever expanding waistlines. We learnt how to do some vegetarian curries and special Indian breads. It was yummy, but when the tutor tells you not to add too much chilli, she says it for a reason! - remember that. I thought my head was going to explode. 

At Jamie's Cooking class

We did it!

Transplant Week, Businesses and Psychic Mediums

It's been great this Transplant Week to see so many people promoting the cause. On facebook loads of people have been changing their profile pictures to show the poster and logo which is great. I've been sending some links around and doing my bit too. Though I would always like to do more. It's just difficult to know where to start and the issue of Transplant is a very grey area. Of course some religions are aposed to it and lots of people are aposed for completely personal reasons (the thought of 'not dying whole' or 'without ones eyes' being seen as the soul by many). It therefore can be difficult to find a line between gently encouraging people to consider signing the register and seeming pushy by relentlessly tweeting and facebooking about it. It's such a personal choice and evokes a lot of emotion  - tricky stuff.

What's been being posted in aid of Transplant week :)

I was really excited to see my friend Tor Tremlett appaearing on Lorraine Kelly's breakfast show this morning. She was dead nervous but she did so well. You would never have been able to tell how scared she was. She was looking so well, great to see the change from where she was last year. In fact if it weren't for Tor's generous donor I would most likely never have been able to speak to her as we only got to speaking post transplant. Well done Tor, great work - keep it up :)

 

As for me, it's all been pretty good going for a couple of weeks. I've been a busy bee as myself and my partner are in the midst of setting up a business at the moment. This is something I would never have been brave enough to do on my own. It's all very exciting and the website will be coming soon so I will direct my readers to it for a cheeky butchers when its launched :P. We plan to sell products for cake decoration so we have been onto to stockists and all sorts. So much to sort out. We are slowly but surely getting there though. 

On a spooky note, I was at a wedding the other day.. and who was I sat next to at dinner?? A 'psychic medium'. Usually I'm sceptical to say the least and not sure whether to believe it or think it's all a load of rubbish, preying on people who are in a vulnerable emotional state etc. But... I may have been convinced!! She introduced herself and we were just chatting casually. I felt like I'd known this woman my whole life, like she was my best friend. Something I can't describe. She turned to me (whilst I had a mouthful of chicken roulade :S) and just said something that really freaked me out. She told me 'not to worry' that I would 'have another couple of really rough years but then things would seem a lot different'. And that she had 'seen my first born so I could stop worrying about whether my health would stop me having kids'. How did this woman know this!?!? She didn't know I had health problems or that I had these worries, she'd never met me before. And I had never told anyone that before. Weird. There was loads of stuff she said and I literally open mouthed, jaw on the floor shocked at how accurate this woman was. It made me feel all warm inside, like there is hope after all. I know loads of people would think I was nuts for believing it but if you knew some of the other stuff this lady told me you would also be stunned. Fingers x'd she's right.. 2 more years to go... then its all plain sailing.

All's Well that Ends Well

What a crazy month. I haven't been able to blog as I have been in hospital and they had no 3G/wifi signal whatsoever. So even when I was feeling up to it, I couldn't get online. This is super frustrating as facebook and twitter are my lifeline and save me from going completely nuts when I'm in hospital for a long time. 

This was the' standard drama' - if I can call it that. I was having some trouble with breathing for a few hours and got really tired out running around during the day which didn't help matters. Sean (my boyfriend) got home from a long day at work (sorry babes) and was greeted by my blue face. It was the night of the England match for Euro2012 too so I felt really guilty as I imagine he'd been looking forward to sitting down to watch it all day. He was keen to get me to hospital, I was more keen to wait it out. Mainly because I wanted him to see the match, and I'd promised him a Chinese take-away that night (haha, small things ay). Anyway he explained how we were better off going earlier than later as after the match A and E would be full of drunk footie fans. After he told me that I didn't take much more persuading. A and E is always horrible on a Friday, and that's when there's not football on, let alone when there's an England match being played!

We rocked up at the hospital and I must say I was feeling pretty shocking by this stage. I wasn't going to make the same mistake as last time and try and get to the waiting room in that state so I waited until Sean came back with a chair and some portable O2. I had my own O2 in the car but its such a big bottle and so impractical.  NB. I am still working on getting a small cylinder as mentioned in previous posts. But it seems yet again my loopy consultant has changed his mind. I despair I really do. 

Looking pretty blue in the car while waiting for Sean and the chair

I got in there anyway, was taken straight through to resuss and had a central line whacked straight in my neck. I know this sounds like a strange thing to say but I was actually so relieved they did that. I usually have to battle with them as they want to try and get a small vein first in the back of my hand or arm. Usually it doesnt matter how many times I tell them that I don't actually have any veins left, they  still want to have a pop at it. So you can imagine my relief when there was a respiratory reg on call who took my word for it and just got on with it. In the long run this is much more beneficial as it means I can be given the necessary meds and get back to feeling better ASAP. It wasn't long before I had the standard aminophyllin infusion and started to feel a million times better. If only they could act this fast every time. My blood gases weren't great (pO2 of 7.2 - normal range is 3-5 I think) which meant I wasn't able to exhale the CO2 and as a result it was building it up - dangerous business. So they had ITU come down and take a look at me. They took me upstaits to HDU/ITU where I had an arterial line put in (ouch!) and lots of infusions started. 

Was so pee'd off as Sean was chucked out and not allowed to bring any of my stuff in. I wasn't allowed my iPod, any wash stuff.. nothing. So I can tell you, that was one lonnnnnnnnnnnnng night of staring at the wall and hearing nothing but buzzing monitors. Plus, not long after the maintenance aminophyllin infusion was started, I began to experience the usual perfuse vomiting as a result. An anti sicknesss I take called ondanzatron is usually really effective. I can't take any other anti sickness meds as they make me sicker (I know - bit backwards ay?!) so this one has been a God send. But even this didn't work this time. So I spent the night puking my guts up until my system was loaded with it. 

Starting to feel and look a bit more like me. Complete with CVP in my neck thanks to very fast acting Reg.

Thankfully within a couple of days I was well enough to go back to a ward. Unfortunately the only bed available was on a gastric ward. The nurses seemed to have absolutely no knowledge in even the most basic of respiratory care. Not to mention, I was stuck on a ward where a respiratory doctor didn't see me, in fact I was seen by a renal team - haha - so that was useful!?! It later transpired that there had never been a handover regarding my existence on the ward and so I spent 3 days there just wasting time and not getting any better since arriving there. In fact, I felt worse and knew I was heading for a return to ITU. 

After Sean took a walk down to the Resp ward to find out what was happening about the mystery bed I was supposed to getting, one finally appeared. Strange how suddnely when you threaten to complain, a bed magically appears isn't it? So I went down there. I'd love to say that the care there was better but sadly not. They were so short staffed, there was one nurse on to every 15 patients. A woman in my bay had a really nasty gastric bug and we were all told that we couldn't have our bed linen changed for 3 days in a row as they had run out of bed sheets. And if anyone made a mess (ie. poor woman in next bed) then they would put a pillow case over it!!! OMG.. this made me gag. I couldn't believe what I was hearing.

I went down hill pretty fast on one of the days after this and found myself begging.... and I mean literally begging the nurse to get me a doctor as she seemed completely oblivious by anything going on around her. She just kept coming back and taking my observations... my Sats were 81% when I told her how bad I was feeling and she said she would go and look at my medication chart. She didnt come back for an hour! By the time she actually called a doctor they had gone down to 71% and I literally felt completely done-in. Nothing left to fight with. The doctor came straight up and advised the nurse to set up a magnesium infusion, and some aminophyllin and went to attend to another patient while she did that. Well, guess what.... this delightful 'nurse' - (I use the term lightly) didn't bother. And consequently I found myself laying there blue and unable to move waiting for a miracle. I had pretty much kissed goodbye to any help. I felt like I knew I was going to die that night. I was completely powerless. I couldn't call for help, Sean was there thankfully and stayed way past visiting times just to keep me alive. He was running about all over the place trying to get them to do their job and help me. I remember just looking at him and thinking, 'this is me... giving up.. I've got no more to give'. I remember closing my eyes and all these things going through my head. I was thinking... my God this is going to be so traumatic for him, when there's nothing he can do to help. we are totally reliant on these useless people to save my life. All he can do is sit there and watch this'. I lay there like that, in and out of consciousness until I couldn't even feel my chest move any more. And I knew... I'd stopped breathing and I couldn't take another breath no matter how much I wanted. It's then my memory just stops...dead... nothing. Nothing but blackness.

Thankfully Sean took the initiative to pull the alarm out of the wall because the nurse just stood there watching, blankly, in sheer panic I guess. Sean tells me at this stage he was really quite verbally abusive to the staff as he knew I was going to die from neglect and he was powerless to it. I say abusive, I don't think unduly. I gather he told them to 'DO THEIR F*ING JOBS AND GET A F*ING DR' as they should have 2 hours before. He had tried and there was nothing more he could do but watch. An emergency response team came, with an anaesthetist and helped breathe for me and gave me a load of infusions of I don't know what of. I just remember waking up, all blurry eyed, thinking 'What the hell has just happened?'. Not even entirely sure if I was alive or dead to be honest. 

And so another week of treatment ensued. This upset me so much. I have been through this countless times believe it or not. I am regularly neglected by health care teams as they don't realise the seriousness of my condition/don't have the staff to monitor me. I carry paperwork with me to explain, so when I am too sick, they can read it and act on it. But even that doesn't seem to impact. It seems I have to dying or dead before anyone takes action. It upset me more this time because myself and Sean were due to take a vacation to Belgium and Germany the following week. And their slow reactions and crap treatment/or lack of meant I had to endure another week in there and that ate into our holiday time. 

We talked afterwards about whether we would still go away.  Afterall  I'd been through quite an ordeal. We decided being in a foreign country where we didn't speak the language probably wasn't wise considering the seriousness of my admission and downward spiral whilst I was there. I felt like such a let down. Yet again, me being poorly had ruined the fun we were supposed to have. 

It turned out okay though... we had a change of heart after my discharge and decided it would be okay if we just took things steady. I didn't walk anywhere during the vacation, I only posed for a few photos standing up. Apart from that I was too tired and breathless to do much. We took the oxygen generator too, and the big bottle for when we were out and about (As impractical as it was). 

Posing with the giraffes at Antwerp Zoo, Belgium

By the lake for dinner in Cologne, Germany

Friendly tortoise at Antwerp Zoo, Germany

Hanging with The Count and Elmo in Gent, Belgium

Beautiful Cologne Cathedral, Germany

My Sean, in a restaurant in Gent, Belgium

We had a fab time and I felt so liberated. Over the last few years travel abroad has become so problematic for me. I can't get insurance and I get too tired to do all the sight-seeing stuff that I love to do. I felt like I was full-filling a bit of a dream really. I never got to do the student travelling thing and I'd longed to so much for so long. I really had felt like I was missing out. I am so thankful to Sean for making it happen for me. It was beautiful and I want to see so much more of it. For those few days, despite being in a wheelchair and getting some strange looks from the Flemish, I felt like almost every other person my age. I travelled through 5 countries in one day. I will definitely go back and see more of Europe. I can't wait :)

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 :)