Rough few weeks

Check me out, updating just a day after the previous post. I must be on the ball!

Felt like having a little rant over some stuff that's been going on, so here goes. As some of you may or may not know... I had some pretty major surgery about a month ago (I won't go into details). Anyhow the surgery itself went to plan as far as I know. I did encounter some issues with the anaesthetics (as is only to be expected with my grumpy lungs). This meant I had to spend a couple of nights in ITU. This is nothing major and is quite a common occurrence for me. Unfortunately I went on to have further issues when I was put on a PCA for pain control. I think the settings were too high and my body didn't like it. I subsequently started having hallucinations which were nothing short of terrifying. I genuinely believed I had died during the operation and was in some kind of limbo. I can not even begin to describe the terror I felt. In a last ditch attempt to 'survive' I made  a panicked called to Sean at 3am  (who was away on work in Belgium) who got in touch with my parents. They drove in at ridiculous O'clock and calmed me down. Once they'd arrived I promptly relaxed and fell asleep. Only to wake up hours later feeling completely 'with it' and embarrassed about the previous nights drama. I was worried I was losing it, but all the doctors and nurses said that it's a common problem with Patient Controlled Analgesia and the concoction of drugs that are in the syringe driver can cause all sorts of horrors to feel like reality. Phew - still got my wits about me for a while yet then!

I stayed in for a few more days. And though I didn't really feel up to being discharged (still struggling with breathlessness and requiring oxygen and strong pain relief), I went home on the surgeons advice.. He was keen for me not to risk developing any more chest infections or hospital bugs. Plus I have oxygen at home so that wasn't insurmountable.

2 days later I still wasn't feeling any better. I saw my GP who I assumed would probably give me some antibiotics for what felt like a chest infection and advise the usual increase in steroids and nebs. But instead she saw my sats were 84% (I wasn't aware they were quite that low) and my racing pulse, and sent me to hospital for bloods and x rays. Turned out my bloods came back pos+ for a clot which didn't guarantee I had one but at the same time didn't rule it out. So it required further investigation. I'd only packed enough for one night as I didn't predict any of this would unfold. But the next day I went for a CT of my chest and a Doppler (ultrasound of the blood flow) of my leg. These, together detected a large clot in my right iliac vein and a pulmonary embolus in my lung (the cause of all the breathlessness and low oxygen levels!). To cut a long story short I spent the week in hospital being dosed with warfarin and Denzaparin and trying to get my breathlessness under control. I finally came home on injections in my belly (which took some getting used to!).

I've been going to Co-agulation clinic to get my blood tested weekly. Thankfully my local clinic measures it with a finger prick test so I don't have to have a million butchered attempts at drawing it from my non existent veins. All's been going well and I'm getting used to the new routine. That was, until a few days ago when then breathlessness and pain started up again. I held off on seeking advice as didn't need any more hassle from it all to be honest and as ever assumed things were 'probably fine' and I was just over thinking it. But when they tested my blood this morning at clinic, it was the thickest it's been yet. I mentioned in passing that the pain had started again. And she immediately made an appointment for me to see the GP today (hmph... Grrrr!). So off I trundled. And low and behold, the GP sent me into hospital for more tests for further clotting. So after 7 hours in the acute medical unit, I've finally escaped with another 10 days of jabs in the belly to break down another PE in my lung. I'm just glad that I didn't have to stay in all honesty.

I won't lie, I'm pissed off. I can handle my other health issues. I know when things aren't right and can generally taper my own medication to what's needed day to day. And I know if something's really not right that  I can go into hospital for IVs etc. But this clotting issue is an unknown entity for me that I'm really not comfortable with. My body doesn't tell me when to worry and when not to with this. I guess I'm still learning to read the signals.  I don't want to be on lifelong warfarin and injections. Nor does anyone. I shouldn't complain, diabetics inject every day and don't moan. I just need time to adjust I guess.

Anyway... Here's to the next 10 days of a bruised belly and no cranberry juice, grapefruit or alcohol (none of which are allowed in this regime). Wish me luck.

Thanks for reading! 

In lighter news, I am now the proud owner of some very cool slippers :)

The Move

I'm moving! After 3 years in my one bed flat in suburban Surrey I'm moving back in with my parents. I always imagined my next move would be to my own place. Unfortunately finances haven't allowed for that. So it's back to my parents in a last ditch attempt to save for my future. 

I have a great relationship with my folks and they are extremely easy going so hopefully the transition won't come as too much of a blow. They've been hard at work clearing out the downstairs bedroom for me so as I can basically live in the downstairs of the house. It gives me a certain amount of freedom too as there's a ensuite attached to the downstairs bedroom. So I'll have my own space. I've already made plans to bring in a sky+ box and make it cosey :)

My mum and dad have been an absolute godsend. They have gone to so much effort with this move. And over the years have helped so much with regard to getting me to and from clinics, walking my dog etc and generally just taking good care of me. 

I'm kinda looking forward to being back there. I love to watch trash TV with my mum and she's a fantastic cook. And my dad can pretty much turn his hand to any DIY issue. He even comes in handy when I'm making cakes as he has quite a good eye for detail and design. So I'm always keen to ask his advice. That is, when I'm not having a meltdown about one I've messed up. Mums always there to help with the fondant covering - which I always stress about.

But I will miss this place. Don't get me wrong.... This flat is damp, cold, it never has hot water and there's not enough room to swing a dead cat.. Let alone keep a pet dog. But it's in a perfect location and I can get to the centre of town, cinema, coffee shops, transport links within 10 mins flat. I will miss that convenience!!  It's back to struggling onto the number 71 bus to get to town. Would I really travel 35mins to the nearest Costa coffee for a mocha hit?!? .... Probably... Sad but true. I'm a coffee addict. 

So wish me luck with the move folks. I'm already up to my eyeballs  in boxes and am frantically labelling everything. I've got another 2 weeks to go - Miss Organised!!

It will be so nice to be able to bath without having to set a timer, which only runs luke warm for 5 mins max. And not be cold and wrapped up in layer upon layer because the heatings knackered. Oh and don't even get me started on the drainage!!! 

Trying to keep in mind that this move is a step closer to me being a home owner one day. Positive thoughts... Positive thoughts :)

Living the Olympic Dream - One crossed off the Bucket List

Hi Folks

This week I am gloriously happy. I don't think in my entire life I have ever been able to say I have been 'gloriously happy'. There is usually something niggling at me. The reason for my perky mood is that I got to attend the Olympics on Monday 6th August. And not just any Olympic event, I actually got tickets for the stadium so I was in with that huge crowd. I'm sure many of you are probably sick of hearing me bleat on about it, not least if you follow me on Twitter or are a friend on Facebook. But it has been a dream of mine to go to an The Greatest Show on Earth since I first understood what it was all about around aged 12. I never actually expected it to happen. So when I got my tickets offered to me in the ballot I was speechless. I remember just weeping like a complete nutter. I'm remembering it here as I type and its making me well up now as well. I know it must seem strange to some folk that I am such a die hard fan of the Olympics. I can't put my finger on what made me start loving it so much, all I know is 'I do!'. I will watch any event and when I originally went into the ballot, I ticked every single box for every single sport for both Olympic and Paralympic sports. I wanted to see it THAT badly that I didn't care what sport I got as long as I got to go.

The excitement on the build up to it over the last year has increased exponentially the closer it has come to my big day. My brother Ben is as nuts on the event as I am and so I was really excited when he was planning to come back from Cambodia just for the games. Unfortunately, due to the ridiculously high prices that flights cost it was unachievable. I had four tickets so I invited my uncle to take my brothers place. We are a bit sport fanatical as a family. That is to say, we love watching it haha, not actually partaking. 

The day started really early, 5:15am - this makes for a very tired Gemma. But spirits were high and my boyfriend Sean was kind enough to drive us up to Stratford for the main event. The park is absolutely huge. The TV set doesn't really do it justice. There is so much to see!! I took the wheelchair for the day, I never would have managed even to get to the Olympic entrance gate without it. Everywhere is a lonnnnnng walk. I'm really glad I made the decision to do so or I would have missed a lot of the magic.

Outside the Olympic Park

Ready to go into the Stadium :)

When we got settled in our seats there was enough time to soak up the enormity of the stadium from the inside. Everyone on the opposite side in the tiers just looked like dots. On our day (Day 9) the stadium was full to capacity - 80,000 people. Even though it was the qualifying heats, it felt like a medal event. The atmosphere was absolutely electric. Whenever anyone ran past on the track or anyone threw a shot put/discus on the field, the crowd just erupted, no matter what country the athlete was from. We were lucky enough to see the 1500m qualification round for the women, 800m qualification for the men, the Women's Shot Put, Men's Discus and 200m Hurdles for the Women. So much to see, I just didn't know where to look!!

Hannah England in the 1500M Qualification - she's wearing the knee high white socks

We all came in our Olympic T shirts, waving flags all the way  and with a lot of Olympic fever!! Was great to see so many people from so many nations doing the same. I even painted my nails with Union Jacks. A day I will remember for the rest of my life, so lucky to have shared it with my loved ones too. I have some great photos and I cant wait to get some of them printed. Now the heat is on to get some Paralympic Tickets on the official website. I would love to see some Wheelchair Basketball and Cycling, though as always, any sport will do for us :) 

 

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.

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!!!