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.


It's Her said...

I too recall that first mention of transplant coupled with the 'look' and 'silence'. Like you, I guess I adapted to being sick, and still felt I could do so much. Plus, when you have a goal (like you completing uni) the determination to achieve same can sometimes put 'being sick' to the back of your mind!

I'm delighted that your lungs and lung muscles are getting stronger. It's amazing when you think of all the teeny things that you can now do with ease.

Wishing you well, big hugs,
Rosie xxx

Anonymous said...

Sounds like you have been busy... Bet it was a bit of a shock for your doc to see you looking and doing soo well.... Glad your out and about again Em...

suzie said...

Good to hear your campaigning head is back on, a very worthy cause too, I think these surgeons and their teams are doing a most amazing job. Dont wear yourself out Em...Ooops mother head on.

Take care chuck
Sue xxx

Anonymous said...

Hiya Emily, know what you mean about Bristol etc was almost like our 2nd home too but at Kids hospital etc.Is a great City and we went to see Chitty Bang Bang last week and was a spectacular show. Does feel weird go back to Bristol though and not being at hospital etc.Have soo many mix memories good, bad, happy sad.

We admire you soo much even now your determination to try and ensure others' like yourself get teh same opportunity of experiencing life with a transplant hopefully improving their quality of life. Making dreams come true from the offer of such 'a gift'.

Take care and in our thoughts...
(((hugz))) Elaine Rach and family xxxxxx
please say hello to Emma hope shes ok? and your family too.

Anonymous said...

I love reading your blog, and have been following your progress and ups and downs since your transplant ( I log on verey day at least once !). I am so pleased you are feeling strong enough now to be up and about. Well done for your courage and ever positive attitude. Well done too for all your amazing campaigning and money and awareness raised for cf and organ donation. There are definitely a lot of things that need changing in the UK.
Good Luck !


Fi said...

Hi Em,
I also find the whole 'death rate' statistic frightening - the fact that the surgeons take on risky cases surely should be a case for commendation, not criticism?! A worthwhile cause to turn your hand to my dear. LTTGL has proved a huge success - I hope the next campaign has equal impact.

Great to see you back out and about and enjoying life. I had a dream the night before you got your transplant that we met and hugged and I was in tears. I had the same one again recently. It can only be a good sign!

Simba said...

Hurrahness for no oxygenness and no hospitalness and for getting out and about with the wonderful Mr A. I'm sooooo happy for you Missy Angel. Big smiles indeed. :)

Glad to see you're back on the campaign trail. My Grandpa was involved in the Bristol Surgeon Support Group which was set up following the 'Bristol baby heart op deaths scandal' in the 1990s. The case rocked the BRI as it resulted in its top heart surgeons being sacked including its medical director.

When the case came to light, there were undoubtably issues which needed to be addressed - James Wisheart, for example was his own boss - but he and the other two surgeons were basically sacked because of their high death rate.

Again Wisheart's death rate was high because he was willing to operate on the most risky patients. The only website I can find is old as the group has been wound up now but it might help you with some background info.

If you want to be put in touch with any of the people involved then I can get you the contact details.

Good luck and lots of love Ms Simbaxxx

Anonymous said...

As ever you are a true inspiration. Lots of love and pink. x

Anonymous said...

As Ever you are a true inspiration. Lots of love and pink. x

Lorraine said...

Still a true inspiration.
Can't wait to meet you again - bring on September - it'll be another truly fabulous day - guaranteed.
I just wanted to say that I think you have a fabulous family supporting you and A is an absolute gem - none of what you have gone through can have been easy for him and he's supported you all the way. You don't get true love like that often - true dedication. Keep a tight hold! xx

Anonymous said...

gosh. your account of your mum's conversation with the surgeon has just made me cry.

Agreed entirely on the mis-empahsis with surgeons. I remember seeing a league table of scottish surgeons a while back, and of course it was nonsense as it was based on death rates and so all the ones at the top were orthopaedic surgeons and plastic surgeons who operate on people who will only die if there is a problem....and then lower down were the cardiac surgeons and the oncology surgeons, who are operating on seriously ill people. And, as always, the papers missed the point, going on about some hospital being one of the worst in scotland when in fact it just had the cardiac centre and the big transplant centre etc.

Anonymous said...

Emily, it's just so nice to hear you are going about doing all the normal things taken for granted by the rest of us. Do enjoy yourself and go easy on the campaigning - you need to avoid getting overtired while you build up your strength. You'll have plenty of time later on.

Agree about the wonderful jobs surgeons do. The rest of us can make mistakes in our jobs and the consequences are less dire but the public is very unforgiving if surgeons fail. Happily there are those who will take the risk no matter what the odds; thanks to these special people you are with us today.

Have fun, Spring is here so enjoy to the full.

Hugs, Janet

Anonymous said...

just a suggestion - keep on giving thanks for your own health and safety and the health and safety of all those you care about!! Don't know why but it works like a charm. You now want to live to a ripe old age in perfect health, with no more health scares for as long as you live so keep up the good work.
Bisous, J.

Anonymous said...

Wow Emily..I was shocked when I read about the surgeon bit/death rates. As u know - we both had the same surgeon..and I too was a risk for different reasons...and they also took a chance on me. I'm so glad they did..or I wouldn't be here to say..Woohoo or keep
I am here - if u need help with this campaign..close to my heart too...I am so lucky to still be alive...lets give others that hope and chance too.
Speak soon...myspace or when u get ya phone back..I may even ring ya!! Ha haa. Lotsa loveeeeeeeeeeeee
Justine xxxxxx