Friday, June 01, 2007

We have been keeping busy campaign wise. Organ donation has cropped up in the news twice this week, once re the rather scary sounding “Big Donor Show" and then on Wednesday when it was revealed the EU are thinking of launching their own donor card to try and combat the huge donor shortage. I became rather narked with the BBC at this point because not only had the previous days article not mentioned anything about how to register as a donor, but then the latter article, which actually talked about the dire shortage of donors, also had no sign up details whatsoever! After a phone call to complain and the magic charms of a journalist friend of mine, a UK Transplant link was added. A small victory perhaps, but it just seems such a logical place to put one!

Yesterday was my regular trip to Harefield. It was strange for several reasons, firstly my mother insisted I drive (and then took me a ridiculous “scenic” route which means I didn’t actually learn where I was going at all) and secondly because I hadn’t been for 5 weeks, so it felt rather strange. We arrived in good time and set about the routine tests, bloods, X-ray and lung function. We had a lovely lunch together in the pub down the road (which I walked to, yay!) at my mother’s request, as she and my family had spent many a time down there either toasting to a bit of good news, or drowning their sorrows at potential devastation.

Whilst there we phoned Lisa on the internal phone, who is still doing very well but is struggling. It sounded so similar to the feelings of confusion doubt and sadness that I had so I told her I have every faith and confidence that she is going to do this, it brought back not very pleasant memories but at least I was able to say I have been where she was so hopefully I know where she is headed.

My appointment itself went fine, I mentioned my wheeze, which has been growing more and more audible, so much so that other people have started commenting on it and Abby has dubbed me “the wheezy penguin” out of Toy Story. After some examination, the doctor decided it is probably (here is where my vast lack of scientific knowledge and understanding lets me down) some…thing where the scar tissue from the join (where they connected the new lungs to the windpipe) gets a bit over zealous and over tissues, creating a narrowing of the airway. There are 2 ways to solve this, depending on the type of narrowing it has caused, and both require bronchoscopies (camera down into the lungs) therefore will require admission. Apparently he is going to confirm the diagnosis with a rather clever thingamajig (didn’t know this was actually a word until spell check corrected my attempt) which creates a sort of 3D picture of the lungs using cross sections of my CT scan. I may be making this up a bit, don’t quote me on it. Still he didn’t seemed to worried about it and if the only problem is over enthusiastic scarring rather than rejection that is fine with me!

Today was a wonderful day (to be honest what day isn’t at the moment). In the morning I had a photo shoot which is predominantly to be used for my mum’s school, who are fundraising for Harefield and the CF Trust all this year. Being the shy and retiring wallflower I am I thoroughly enjoyed the experience, especially as I got to wear my gorgeous long floaty skirt that only comes out on special occasions, and run through a field barefoot (in fact I enjoyed that bit so much I requested to do it again. And again.) After lunch, my mother and I headed up to the Brompton. I had been dying to go and visit the staff who looked after me for so many years and seeing as my mother is on half term we thought we would take the opportunity. As the lifts opened on the 2nd floor I caught sight of one of the physios who had helped me train for last years hydro active. She shrieked and I ran and threw myself at her, hugging her and laughing (it was either that or cry). My CF nurse was there too, someone who has helped me through the years and who last Summer had to give me my end of life talk, and was now gobsmacked standing their chatting to me, well listening to me as I hardly let them get a word in edgeways.

As we moved through the hospital we found my other favourite physio, who again has endured countless hours of listening to me, comforting me, and most importantly, helping me breathe. We went up to the wards where there was more cries of “oh my god!!” more shocked faces, more smiles and more tears. We then headed over to the High Dependency Unit, where I was for so long 2 years ago, and were reunited with the staff there. The head sister took me downstairs, through some long winding corridors, to see the surgeon who had saved my life twice over doing complex bullectomies and adhesion my lungs to the chest wall to try and stop them collapsing. It was so wonderful to get to see these people when I am not a)terrified b)struggling for breath and c)desperately ill.

I did my calculations this evening when I got home. I estimate that I owe at least 17 people from that hospital my life. Now bearing in mind, those 17 are people I can think of who I am pretty sure I would have died without their direct intervention. As for the number of people that got me through psychologically and physically to keep me fit enough for transplant, it is a huge number, far greater than I dare estimate. It is funny to sit and contemplate just how many people have got me here, if I tried to calculate the total medical care and intervention at pivotal times of desperate need, I suspect I would be nearing 100. There is an advert I have seen for the NHS in which a patient talks about the number of people it took to put them back together again. These people are amazing. I know it is a job, they are paid (generally not enough) and that that is their responsibility but I have found that 9 times out of 10 they go beyond the call of duty, which is why I considered today’s visit to be to see old friends rather than just a courtesy call. Ending with something I say an awful lot; I am a very lucky girl.


Anonymous said...

Happy, happy days x

Emmie said...

Oh I do love your totally unscientific explanations, they are utterly genius! ;o) Hope the thingumyjig and the whatsit can sort out the doodah. Just don't ever comntemplate going into medicine Em ;o)
Love you! xxx

Anonymous said...

Good to hear you doing well and having your 'wheeze' checked out etc ...

Well about the donor show which is supose to offer a kidney as a prize etc aparantley I read on Kidney Patient Group IS aparantley a sick. hoax!!!!!!!!!! :O ggrrrrr although got everyone talking about teh show etc think its insensativity etc outweights the promotion it may have done.. although sure people may have different views...

Bet was so emotional to see staff etc that have become friends and soo good for them to see you looking so well.

take care have a good weekend
(((hugz))) Elaine mum to Rach (kidney transplant 19mnths ago...)xx

fairenuff said...

The TV show has been proven to be a hoax now...

"A television show in which a woman would donate a kidney to a contestants was revealed as a hoax Friday, with presenters saying they were trying to pressure the government into reforming organ donation laws.

Shortly before the controversial program was to air, Patrick Lodiers of the "Big Donor Show" said the woman was not actually dying of a brain tumor as claimed and the entire exercise was intended to add pressure on the government and to raise public awareness of the need for organs.

The three prospective recipients were real patients in need of transplants and had been in on the hoax, the show said.

The program concept had received widespread criticism for being tasteless and unethical.

But Lodiers said that it was "reality that was shocking" because around 200 people die annually in the Netherlands while waiting for a kidney, and the average waiting time is more than four years. Under Dutch rules, donors must be friends, or preferably, family of the recipient. Meeting on a TV show wouldn't qualify.

"I thought it was brilliant, really," said Caroline Klingers, a kidney patient who was watching the show at a kidney treatment center in Bussum, Netherlands.

"I know these transplant doctors, and I thought they'll never go and actually do it. But it's good for the publicity and there are no losers."

During the show, viewers were called on to express an opinion or vote for their favorite candidate by SMS text message for 47 cents.

The show was produced by Endemol, which created "Big Brother" in 1999.

The Royal Netherlands Medical Association, known by its Dutch acronym KNM, had urged its members not to participate and questioned whether the program might just be a publicity stunt.

"Given the large medical, psychological, and legal uncertainties around this case, the KNMG considers the chance extremely small that it will ever come to an organ transplant," it said.

All seven of the country's transplant centers had said they not cooperating with the program, KNMG spokeswoman Saskia van der Ree.

Earlier in the week, the Cabinet declined suggestions from lawmakers to ban the program, saying that would amount to censorship."

Anonymous said...


thank you so much for your thank you. As an NHS invisible (i.e. not a doctor or a nurse) I feel humbled to be, in some way, included in your thanks. I work in tissue transplant and so we sometimes get unplaced or unsuitable multi-organ donor hearts, which we can process for heart for valve transplant. Knowing your story has added an extra level of pride to my work, knowing that in some small way I am contributing to giving the world back more people like you. To be thanked as well, albeit indirectly, is special praise.

I'm so glad you got to go back to all those people and bring joy to their day.

Anonymous said...


Fi said...

Nice words Em. I try and thank my team as often as possible, just so they know I appreciate them even in their everyday work.

2 years I had am embolisation just before I went to NZ. I sent the radiologist a postcard and apparently he was delighted as it was the first out-of-hospital recognition he had had in years, and reaffirmed his belief in his work (?!). I always send PCs from abroad to say thank you for helping me get there. Your gestures are larger, and must bring joy to an otherwise often 'unthanked' taskforce. Well done :)

Anonymous said...

What a lovely, cheerful, newsy entry Emily - lovely to picture you running barefoot through the fields; what greater pleasure can life offer.

Don't worry about the further testing. Just keep telling yourself from now on "great, my test results are excellent and all is well". You'll be fine girl.

And thank God from all of us for the wonderful people in the medical profession, most of us would not be here without them.

Keep on having fun,