Friday, March 30, 2007

Firstly and most importantly please can I apologise to anyone who has received weird texts from my phone this week - the person who has found it obviously thinks it is funny to use up my credit sending vulgar messages. It isn't me and I am hoping to get the phone back this weekend. Really really sorry! Now on with the story...

The operation was slightly more complex than expected. The huge amounts of sticking cutting, stapling and gluing over the last few years resulted in my lungs being fairly welded in, and a predicted 5 hour operation stretching to 9 hours in total. My family slept (or attempted to) huddled on chairs in the waiting room of intensive care until at 5am the news came that I was out of theatre. The surgeon appeared to give them a brief account of how it went. He explained about the time delay and was careful to emphasise that this meant the new lungs were out of the body for too long; the optimum time is 2-4 hours and my new lungs were without a blood supply for 5 hours 20 minutes.

This time delay caused a film of water to develop around my lungs, and over the next few days, repeated blood gas tests showed the lungs weren’t working properly yet and I couldn’t be brought round. As some of you may know, I am notoriously difficult to sedate and true to form even with doses they would usually only consider for large adult men, I kept coming round and pleading with them to take the ventilator out. During my time sedated I smiled, squeezed my mums hand, reached out to my grandma and various other displays of naughty behaviour one does not expect from someone who is fully sedated.

My first memory is a very hazy one of coming to on the ventilator. This was actually the Tuesday after the operation (which took place overnight on Thursday) although I wasn’t aware I had been out for so long. I won’t lie, it wasn’t comfortable, and I was desperate for them to take it out. When attempting to signal this I was told we had to wait an hour to ensure I had regained consciousness fully and would be able to breathe adequately on my own. That hour felt like an eternity as I watched the minutes creep round on the clock until finally the team came in…and the tube came out. I gasped in my first breath of air on my own and almost immediately started panicking. They told me I was doing really well I just needed to slow my breathing down and try and take deep breaths but it felt wrong and my breath came in frequent ragged gasps. I no now that this was probably due to the water logging of the lungs. I was petrified and kept trying to focus on people I knew who had had their transplant and the fact they had overcome this to calm me down and give me strength.

My mum and A were brought in, and hadn’t been told that I had been extubated resulting in my mum shrieking as she saw me sitting up in bed being handed a cup of water to sip for the first time. For some reason in my confused state I was extremely anxious about my family coming in, and was reluctant at first to see them. I think because I didn’t expect to struggle I felt almost ashamed that I wasn’t sitting up waving merrily and able to talk straight away, and didn’t want to let them down.

As the day went on, I struggled more and more. The nurse offered me a cup of tea which I accepted and that first sip of hot sweet tea was like nectar. I tried to slow my breathing down but it remained uneven, and my mum says by the time they came in to visit on Wednesday morning I was looking dreadful, sweaty, grey and struggling. I had also been put on the breas - a mask strapped to the head which pushes the air in and works as a non invasive ventilator – after a bad night. As my parents left the room the doctor followed them out and explained he had decided that I needed to be re-ventilated, it had been worth a try but I was struggling too much and the ventilator would help dry the lungs out. So back went the tube down my throat and I was sedated once more.

Tuesday, March 27, 2007

A typical Thursday afternoon. It was fairly nothing weather, not raining but not sunny. I had managed to haul myself out of bed and away from the computer in time for my friend’s arrival. We sat and chatted, watched rubbish on TV and she cooked lunch whilst I rested. Whilst discussing the politics and moral dilemmas featured in the highly thrilling daytime soap doctors, we were rudely interrupted by my phone going. Dutifully my friend lept up to retrieve said phone and raced it to me. My heart skipped a beat, Harefield’s number was flashing up. “Hello Emily? Where about are you?” I confirmed I was at home and with someone, whilst inside desperately wanting to demand to know what she wanted. “We may have some organs for you.”

In true Emily style I promptly burst into tears and was able to say anything vaguely useful or coherent to a)the somewhat confused coordinator and b)my increasingly alarmed friend. I managed to babble that I would leave as soon as possible and hung up, wailing instructions at my friend to phone A at work and tell him Harefield had rung. I phoned my mother, who panicked and turned to my sister asking if she should drive. Bewildered my sister confirmed this would indeed be a sensible thing to do right now and they set off in the direction of my house.

I had regained some calm at this point and an excited energy was filling me. My friend and I raced round the flat (as fast as tubing and lungs would allow) gathering together essentials, filling the oxygen cylinder and putting them by the door. As we paused for breath the phone rang again. The minute I saw Harefield’s number I knew it was bad news, they don’t ring twice. The coordinator confirmed my suspicions the minute I picked up; the donor family had changed their mind and withdrawn consent. The wall I was staring at became blurry as I swallowed hard and tried to accept this news like an adult but I was absolutely devastated, this chance had been taken away before it even began. I mustered up a few words of thanks to the coordinator and sat down in tears. At that moment my mother arrived, so I quickly explained the bad news through my now somewhat noisy sobs. She was brilliant as always, took it all in her stride and whilst hugging me tightly gently reminded me that somewhere someone was going through the greatest torture imaginable having just lost their loved one. Once I had calmed down we phoned Harefield back just to go over what had just happened. I asked if there was any chance the family might change their mind again and the coordinator said it was highly unlikely, and anyway the retrieval team only had until 5 to get the lungs.

As we sat in a daze, reflecting on what had just happened, my dad and Abby arrived and A confirmed he was leaving work anyway and would be home shortly. Frustration building, I disappeared into my pink sanctuary (also known as the bedroom, A really is a patient man allowing me to pick the paint colours) and sat and blogged my vexations. Having done so and feeling slightly better I rejoined my family in the lounge, where my mother suggested we go shopping as we now had a full cylinder of oxygen plus wheelchair just waiting to be used. I voted against the suggestion because it was still only 4pm and I couldn’t bear to leave the house till after 5; even though the coordinator had said there was virtually no chance I just felt it would be tempting fate.

At approximately 4.30pm the phone rang again. “Emily are you sitting down”. Untruthfully I said I was even though the minute I had seen the number on the screen I had leapt onto my feet and started pacing around by the fireplace. “The family have changed their mind, the retrieval is going ahead and we need you to get here as soon as possible”. This time I was calmer and managed to finish the conversation in a normal manner before heading straight for the door.

As we drove down the motorway I began to feel waves of anxiety rising, the adrenalin causing my heart to thump wildly and my oxygen was as high as I dared have it without risk of it running out before we got there. I demanded my mum and Lucy talk about something to try and distract me so inexplicably a long debate about past holidays – where we had been and what year – started, and we relayed fond memories of frolicking on the beach under blue skies and sunshine. We reached Harefield in good time and quickly settled on the ward, joined by my dad Abby and A some minutes later. Back on high flow oxygen with no danger of it running out I was much calmer and we sat and chatted whilst bloods and temperature were taken. I showered in surgical scrub (which was pink woohoo!) and donned a highly attractive pair of paper knickers and a hospital gown. On return to the room I was greeted by the surgeon who was reading my results. He explained my temperature and white cell count were both slightly elevated so he was waiting for my CRP (inflammation markers) result to come back before deciding if I was well enough for the operation. The minutes dragged on, we all sat and attempted to chat normally but I am fairly sure everyone’s attention was focused towards the door. The surgeon returned confirming I had a CRP of 16. This was a stonkingly low result for me (they were dancing around 100 the last time I got a call) which I explained pleadingly. After a few minutes contemplation he spoke “I think we should go ahead”. Suddenly I realised what he meant, the organs had been checked, they were ok, this was actually going to happen.

I had half an hour to prepare myself before going down to theatre and spent the time with my mobile glued to my hand, phoning a few people, speaking to various relatives, and texting one or two others. Wrist bands were attached, rings removed and consent papers brought in to be signed. I also realised at this point I had never legally verified my will, so scribbled down my parents as executors and got two nurses to counter sign it as witnesses. In what seemed like no time at all the trolley appeared at the door and I was on my way to theatre. I parted from my family with as purposefully loud and confident “see you later” as I could muster, before I was taken through the double doors and into the operating theatre.

To be continued.

Sunday, March 25, 2007

With the novelty of no oxygen constraints still being fresh A and I have been out and about more in the last week than we probably managed in the whole of December. Nothing flashy, just leaving the house, going for a meal, going into town, it’s all so exciting and a privilege to have such freedom to do so without watching the hand of the oxygen dial moving towards empty.

Yesterday we went up to Bristol as there was a concert A really wanted to see and I think of Bristol as a second home since I spent some of the happiest years of my life as a uni student there. We met up with the man who is ultimately responsible for me being here today, that is the head CF consultant at Bristol Royal Infirmary. It was fantastic to see him and to be able to show him this wonderful new transformation. I will never forget the day he wandered into my room on the ward where I had been for a couple of weeks, sat quietly for a bit and then asked me if anyone had ever mentioned transplantation before. Naively I said yes I was aware some people needed it when their CF got really bad, and very little else was said on the subject. It was only once he’d gone it dawned on me it might be in reference to my own health and I was stunned. The problem is I still felt “normal” as you learn to adapt and work with what lung function you have, but early referral is vital as was proved to me as I went on to wait nearly 2 years for my lungs. He was responsible for getting me referred and for keeping me as well as possible whilst I finished uni (which nothing, neither oxygen nor wheelchairs nor indeed collapsed lungs and chest drains was going to prevent me from doing).

We relayed the full story of the huge rollercoaster to him (I will be doing the same on my blog over the coming month) and chatted about all things transplant related. He said to have survived what I did there must be some reason and I think he’s right. I also know full well where my energies will next be invested, I have some serious campaigning to do on the issue of surgeons and how they are “measured”. At present if you try to look up the surgeon who did my transplant, one of the first things that will appear is the death rate.

I feel this is an extremely unfair way of measuring someone’s competency when the cases they are working on are ones like mine; highly complex and very high risk. Consequently I did nearly die, but surely the main focus should be that without a transplant I didn’t even have a chance and would certainly have died, making the operation the only option. The day my mum calls Black Thursday, when they finally said to my parents there was nothing they could do, the surgeon apologised to my mum and she said to him she never wanted to hear an apology again as whatever happened from then on, they had given me a chance and my family would remain indebted to them for that. It is far more long and complex than that but I have a lot of research to do and then I will pursue this matter as far as I can. I could have easily been turned away that night but they took a risk, and it paid off, I want to do everything I can to make sure that for people in the same position as me who want to take that chance they have the opportunity to do so.

Due to no longer being able to cause spectacular commotion health wise, I apparently decided to create a disturbance by dropping my phone on the street in Bristol. Someone has found it and was thoughtful enough to ring the number labelled "home" so we know it's been retrieved, but as yet I have not being reunited with it, which is why I appear to be ignoring you if you've rung/texted.

Friday, March 23, 2007

Trekked up to harefield again yesterday, they start you off with clinic appointments twice a week (keeping a close eye on everything which is highly reassuring) and then reduce it slowly as time goes on. I received another glowing report, and this time as opposed to being described as resembling a dogs dinner (yes that is the medical term they used) which was a consequence of the massive pneumonia I picked up after transplant, yesterday the CT scan was described as “bloody fantastic” (a medical term I am keen to hear more of). I took the opportunity to go back to intensive care and visit the wonderful staff who cared for me for 7 long weeks. It is so therapeutic to be able to walk in and stand and chat when you spent so long flat on your back, attached to a ventilator and unable to move – that makes ICU seem a much more frightening and sinister place whereas revisiting helps me modify my memories and put it all into context. I also met and was thanked by one of the top bods at Harefield for the Comedy benefit – we raised a fantastic £20 000 and I have watched the show as it was recorded for me and it was just brilliant, I am so proud and so grateful to everyone who continued to work on it whilst I was off wreaking havoc in a semi conscious state.

On the way home from harefield, I was going over memories of the last few months in my head. You don’t realise how ill you are or how hard things are until you experience a difference, and thinking back to my puffy days, where I could literally neither move nor talk and only just had the energy to breathe, I cant believe how lucky I now am. My lung function is currently just under 50% (expected to rise over time) so with it being at 19% previously, the difference is indescribable. On Christmas day, I was so out of puff I didn’t feel well enough to open my presents, little did I know just 2 weeks later a whole new chapter of my life would be beginning. It just goes to show no matter how hard things get, whilst you are alive you are still living and there is always hope.

For those who have been getting in touch and not hearing much back, big apologies for being lax on the email/text front; I am still readjusting to being home and to this strange but brilliant new world so am being a tad uncommunicative at the moment, rest assured I will be chattering your ears off sometime in the very near future!

Wednesday, March 21, 2007

Thought I should do as instructed and point people towards the following comment left on my blog:

chris said...

Congratulations, You've been nominated in the Politics category for the 'Best of Brit Blog Awards'. Please show your support by posting our link on your site to encourage your readers to nominate their favourite blog - but hurry there's only two days left! Please see below for further information on the awards. Thanks again for your support

Best Wishes,

The Best of Brit Blog Awards team
0207 908 6488


Tuesday, March 20, 2007

I am the most smiley lucky girl in the world. Today was a fabulous day, here are some of the highlights:

I had a bath. No oxygen mask whacked up to 8 litres, no panting as my body attempts to get used to the hot water, no gasping as I had my hair washed, just a hot bubbly relaxing bath.

I did some washing up instead of lying on the sofa whist A made breakfast.

Whilst at my parents I went upstairs to chat to my dad instead of him having to come down to me.

I made my mum a cup of tea when she got in from work.

It's funny how it's the little things which are quickly becoming the most treasured, today I finally started to realise that actually, this is my new life now, by doing something like having a bath I wont then be laid up for the rest of the day my lungs screaming in fury. I went shopping today too (big yay) although after a fairly substantial walking attempt did give up and use the wheelchair as my legs are still pretty rubbery and there was muchly purchasing to be done. We stayed in town for four hours and lunched out, so wonderful not to have the constant constraint of Oxygen cylinders running out forcing me to return home after two hours.

I had my first outpatients appointment yesterday (didn't even take my wheelchair, what a feeling) and got a glowing report, everything was heading in the right direction and the doctor was really pleased. I am still in the very early days so I know that further complications are likely, but I am just focusing on this wonderful feeling of just being alive and able to breathe which I am lucky enough to have right now. Can I at this point say a huge thank you to everyone who donated money to the fund that Emmie so kindly set up for me, I am a bit overwhelmed by the generosity and promise I will update with what it enables me to do.

My birthday on Sunday was wonderful, surrounded by my family and friends who haven't seen me tubeless for 2 years. It was exhausting but fantastic, the best part: blowing out the candles on my cake.

ps - Hotmail kindly terminated both my email accounts whilst I was playing around with ventilators and the like, so I won't have received any mail sent in the last few months. I have now reopened both but of course lost all my addresses so please get back in touch everyone!

Sunday, March 18, 2007

Not sure how to start this entry, I tried several beginnings but even YAY doesn’t seem to suffice. In case it’s not obvious it’s me writing my first entry in a brand new chapter in my life. I wrote the following about a week ago:

So it’s happened. I have, as my dad says, gone through the looking glass and am now in a strange new world. to be honest its all still a total daze and the reality hasn’t sunk in yet; I have had my transplant, I am alive….and I can breathe. Of course its still very early days yet but I can breathe. A friend came to visit today and said how different I sound, no heavy breathing or pausing for breath in the middle of sentences. It hasn’t been smooth, the opposite in fact and I am still very weak from the op not to mention the huge infection I managed to aquire just after (never been one to do things in a straightforward well behaved manner). Sadly I am possibly the most impatient person in the history of mankind so not being a spectacular patient, but someone gave me the gift of life and I am determined to get strong and make the most of it.

I am keeping this entry short as my fingers are still all rubbery and lame from being sedated for so long so typing is taking me a while (not to mention a big day today as some of you already mentioned, a birthday I wasn't sure I would see).

Lastly thank you all so much for your wishes and thoughts, thanks doesn’t do justice to my gratitude but rest assured when it gets really tough it’s people that keep me going. Love and sparkles to all.

Wednesday, March 07, 2007

Just to add a small 'Part II' to yesterday's post, Emily and I had a lovely walk today outside in the sunshine... see the pics below for one very proud face, not to mention the pinkest dressing gown Harefield has ever seen. It was lovely to be out in the sun and have some normality, and she did some fabulous walking. We ended the day by having our first meal 'out' in the hospital cafeteria across the way. Tomorrow we plan to have lunch out again, and perhaps tackle some stairs! Bring it on. Thanks all for the lovely messages.

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Photobucket - Video and Image Hosting

Tuesday, March 06, 2007

This is probably the last one from me, as hopefully Em will have access to this soon.

I had the wonderful, uncanny experience today of walking into my sister's hospital room and seeing her completely without tubes, drips, chest drains, nasal specs or trachea mask for the first time in two years. The team have been cutting down on the support for a while now, but the last thing to go today was the tracheaostomy tube, and the decision was made to take away the oxygen too. Em was completely independent, and while this is obviously a huge step and obviously causes a few jitters at first, she looked thrilled and disbelieving at the same time!

The miraculous nature of what medical advances have done for Emily has only been hitting me (perhaps I'm a little dense) over the last couple of weeks. As she pushes past the boundaries that CF had set for her before this operation, the reality of what she can really do now is only just becoming clear. I am so excited to discover what Em can achieve now she isn't breathless, tired, and confronting her own mortality. If she was positive and assertive in that situation, watch this space for a human whirlwind when she's fully functioning!

I'm so indebted to the wonderful Harefield team for everything, and so proud of Emily's physical and mental capability throughout all this. She inspires me to be a better person, and to never take my existence for granted. Being able to leap on to her hospital bed for a cuddle, with no delicacy in regard to drains, monitors or cylinders, was better than any feeling I've had in a long time. Keep promoting organ donation... it IS a miracle, and the biggest miracle of all is that it is US that creates it.

A proper update from the lady herself very soon! Thanks to everyone who supported Laughter for life, it was a huge success, and Emma and Oli are such stars for making it just what Emily pictured. Great job guys.

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Photobucket - Video and Image Hosting