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.

Botox - sadly not in my lips or crows feet :P

Having some pre-op nebs before laryngeal botox surgery.

..

All went went. Home now. My throats a little sore and my swallow isn't quite right but this is normal and to be expected. I have this procedure done every 3 months to help my laryngospasm

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 :)

It's not all death and despair

For the last few days, I have felt pretty darn good as things go. I've been feeling quite sprightly and managed to go out and about quite a bit. Tonight I'm hoping to go to the cinema with mum for a girlie night to see Prometheus. And a kind friend gave me some Cafe Rouge vouchers that she claimed when she cashed in her Tesco points, so I'm going to treat my lovely mum :)

I wanted to also take a moment to thank all the friends I have made through twitter and online forums who for the most part also live with chronic lung conditions. You have all been such a great support to me. More than you'll ever know. Just a year ago I felt so alone with all of it but you have given me reason to believe there is hope and your input has given me just the boost I need to start looking to the future again. I shouldn't name names as I'm scared I'll leave someone off the list but to name a few, Tor Tremlett - ever my inspiration, and fast becoming a cake decorating genius, Richard - who has helped me more than he'll ever know and offered me a friendship for which I am truly grateful  (even if we did fall out over something silly), Gemma - for being an upbeat and ever optimistic friend, plus the Northern Ireland contingent - namely Lauren who incidentally has the coolest baby dogs in the world. And 'Sheffield Claire', always a shoulder to lean on - metaphorically of course as we actually haven't met yet haha. Plus our very own 'islander', Jack - keeping it real!! Luv you all - 'you da bomb'. Plus loads of others that I can't thank enough :)

Sickly sweet Oscar styly speech over for this year :) < bows>

No Port, more expense and crap art

Crazy week. Long story involved which I'm not in the right mind set to go through start to finish. But main point I should probably mention is that I had my Brompton consultation today. And surprise surprise - no Hickman, no port - no line of any kind will be entering my sub-clavian any time soon. Apparently the risk of sepsis is too high and in emergencies the staff in A and. E wouldn't know how to access it. I disagree. Clearly I don't have 15 years of medical school to back up my opinion but I do have 27 years of living in this body, with these lungs. Not to mention a fractured shin to show for the last effort that was made to gain access when I was on deaths door and there were no veins to be stabbed. perhaps in my own stupid little way I think that it more than qualifies me to disagree?!? So with that little bombshell I am truly vexed. I can't say I didn't expect it. I knew he would say no, was just hoping for a miracle I guess. 

Was also told because I'm not a CF patient I still have to buy my own (£300+) nebuliser machine. That basically says 'If you're not CF then your need isn't as great' - that is despite the fact that I have more admissions than the average CF patient?! I am not saying I am more deserving - quite the contrary. I am saying we all deserve to be treated the same and to have access to the same treatment and funding regardless of the chronic lung disease we have. 

To add to my day of just general pissed-off-ness (<made up word> before you grammar geeks jump on the 'correct term train') I had to stare at that god awful cheap, shitty, donated 'art' they have on display there. In fifteen years that excuse for 'art' has not changed. It doesn't calm me when I've waited over two hours to be seen as intended but makes me even more fractious. One day I am going to lose my nut in there and break it over my knee and then burn it in some kind of pagan ceremony. Brompton really? - come-on!!!

Neuro Physio - Hope for the future?

I went to see the neuro-physio yesterday. I have been before and I really like the lady I had. She was on my wave-length. This time they gave me someone more senior. She seemed quite cold and so I was a bit worried she'd be a bit of a slave-driver. I wasn't wrong. She really was making me work hard. She had no time for friendly conversation. Just got straight to it. She started by looking at my gait (the way I walk). 

(As any of you who know me will know I use crutches to walk these days due to a incident that happened two and a half years ago. I was in an unfamiliar hospital as I wasn't in my area when I got sick. I was therefore taken to the nearest one. I was very sick and spent 3 weeks on life support in Intensive Care there. Unfortunately due to poor care, and downright neglect effectively, I got compression on my spinal cord. As a result my nerves no longer worked as they used to. As an extra stroke of bad luck, this was around the same time as I started to develop Avascular Necrosis in my hip joint. With the both happening in unison I struggled to control my pain and walking was very difficult).

I had only walked a few steps and she asked me to come back to the physio bed. She examined me and to my surprise announced that there was no point in treating my legs, as all the problems I had were now stemming from my spine. At the time of my initial spinal cord compression, I was not given the right care. No trust would accept responsibility for the payment of my treatment and I was therefore left with no neuro-rehab. I waited for over 18 months for someone to agree. As a result, my problems have only worsened. She said eventually they will be able to begin working on retraining my legs to do what they should be, but for months yet, the work she will need to do will be totally focused on my spine. 

So despite her coming across as a bit of 'little Hitler' at first, she seemed to really know her stuff when push came to shove. She seemed so confident about her plan. I found this encouraging, as for so long now I've remained pretty hopeless as far as regaining my ability to walk unaided. I'd even began to rely more heavily on wheelchair as walking was becoming too tiring and painful to bare.

We've scheduled 3 months ahead for appointments, and there will be many more than that I'm told. I'm just excited at the prospect of walking again. I don't care if it takes ages, I just want my mobility back if I can get it. Mobility is also crucial if I want to retain any kind of lung function. Since I haven't been able to do any exercise my lung function has plummeted.

There are no promises of course, and she didn't even speculate as to whether I would ever retain any of it, but for now I feel hopeful at least.

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'.