Friday, June 29, 2007

Thanks for the feedback and thoughts on my last post. Always interesting to read other people’s experiences and beliefs on the matter.

Last night I did another talk, I am doing quite a few now and trying to approach different groups in order to raise more awareness. This one was at a Bupa hospital, and was kindly set up by a friend of mine, who I met many years ago in hospital not through CF but through similarly dodgy lungs all the same.

The talk went really well. They were a lovely group, I was slightly more nervous than usual as these were health professionals so of course my marvellous “and then it went a bit deflatey and sat at the bottom of my chest cavity stubbornly” explanations wouldn’t really do. They had covered all the tables in pink paper (woo!) in my honour too. I did my usual blurb which is to run through my life really, throwing in facts about CF and about organ donation along the way. I love public speaking I really do, but I still haven’t quite become used to making people cry. It makes me feel sad watching them but I know that it means I am getting the severity of the situation across and also that luckily for me my “story so far” has a happy ending. A group of them are running the 10k soon to raise money for Foulis ward, which I spent many many months on as many pwcf do so click here to sponsor them.

I finally heard back from Harefield. I had a CT scan last week to investigate my Wheezy Penguin Syndrome. Essentially what they thought they would see (sciencey goggles on please) is evidence that at the join of the new lungs onto my windpipe, the scar tissue had got completely over excited and over accumulated causing a partial blockage of my airway which would make a wheezey sound like I currently have. Weirdly the CT scan showed no such behaviour, so now I am booked in for a bronchoscopy and possible biopsy to examine things further. I told my mother who put on a pouty face somewhat similar to mine and decided flatly that I could not be spared for a night or so. Good to see where I get my mature streak from then.

Am not too worried, apart from obviously the dreaded ‘R’ word which does crop up when pondering over what it could be. Still I have had a general anaesthetic more times than I have had hot dinners, and it will be kind of nice to be a patient at Harefield and actually be able to walk over to the canteen! Plus A is going to drive me up there on Monday night and we are going to go to a gorgeous little restaurant in the town that I have never been to. So anyway it won’t be a big deal, will let everyone know how it goes once I am back. At least I am only missing rain rain and more rain…

Wednesday, June 27, 2007

Every now and then, the subject crops up on the message boards about having another child with CF. Cystic Fibrosis is hereditary, and when both parents are carriers of the gene there is a one in four chance that their child will be born with CF. For the majority of parents, they have no idea that they are carriers so the birth of a child with CF comes as a total shock. But once you have one diagnosis, you are aware of the statistical implications of your next born, which brings up the terribly hard question: should you risk having another child with CF?

When I was born, there was no method of testing the foetus for CF. Now things are quite different; there are techniques such as PGD and CVS , which can offer further options and a possiblity to ensure the child does not have CF.

I used to think it was all very clear cut. Having a child knowingly with Cystic Fibrosis was wrong, I was sure on the matter. This was predominantly due to several factors, one of which was several devastatingly sad experiences of young siblings with CF that I knew through hospital. But then I began to grow up a bit, I met several very interesting people, developed close friendships with other pwcf, some who have or have had siblings who also had CF, and who had a completely different view of it all. It began to change my opinion, help me see that perhaps this issue wasn’t as clear cut as I thought.

The one opinion I stand by quite solidly is it does annoy me when prospective parents talk about whether they can cope with two children with CF. As far as I can see, that should not be the issue. Mind you this is not unique to children with CF; this is a frustrating discussion that many prospective parents might have. Yes it is all very well deciding that you can cope with a child and that you want one, but what about the child themselves? Surely the consideration should be whether it is the best thing for them?

I no longer think there is a right answer. Cystic Fibrosis is so unpredictable, you could have a firstborn extremely well child with CF then the next one could be terribly ill. Or vice versa. As for sibling relationships, I am extremely relieved neither of my sisters have to go through what I do, but I also know people who have had life-alteringly close bonds with their siblings and been able to help each other as they both share the same illness.

There is lots more I could say on the matter but I think I will leave it there, open ended. It’s an interesting topic, and I don’t envy the parents having to discuss it and consider all the options. Yes you can have a good life with CF, but it is no walk in the park, it can kill. And there are no guarantees. Mind you there aren’t in any walk of life are there…

Saturday, June 23, 2007

Yesterday was my CT scan appointment at Harefield. Seeing as I am feeling so much more normal and now attempting to be a real adult, I decided I should drive myself there, after all it can’t be that hard…my sisters, knowing me far too well suggested perhaps they come along for the ride, and when I picked them up they were armed with directions and a rather large map, which is just as well because apart from “go on the M25” I didn’t really know where we were headed. I stick by the fact that I was in Harefield whilst they trekked up there continuously therefore it is reasonable that they know better than I do how to get there.

They brought some rather good CDs, with loads of songs that brought back memories of when I was younger bouncing up and down to them, and we sang all the way there. We arrived in plenty of time so went to the nearby pub; a place which became a second home to my family whilst I was in. If there was good news, they would go there to celebrate, if it was bad, they would go to drown their sorrows. Abby squeezed my arm gently as we stood at the bar, and said how strange it was to be standing in there with me, strange but in a good way. We sat at quite a significant table, as it was the one they had all gathered round in excitement the night I was called, but had also wept over on Black Thursday. This time it was just me and my sisters, sitting raising our glasses to the fact that for the first time, all three of us were there together.

We had a lovely lunch and then made our way up to the hospital. I was in nice and quick, and I recognized the radiographer so said hello and after peering at me for a second she confirmed delightedly that she had been on call the night I got my transplant, and oh my goodness I looked so well now! The scanner is a new one, funded recently by an appeal Harefield ran. For anyone that has never seen a CT scanner they are essentially like a giant donut, with a slidey bench which, er slides in through said donut (I bet that mental image is much clearer for you now isn’t it). It has a nice polite voice that says “and breathe in, and hold your breath” whilst some little lights flash and the bench moves slowly through the donut, then “you may breathe normally”. We go through that a couple of times, and that is pretty much all there is to it. As I lay there in between scans, counting the tiles on the ceiling, a man wandered in to pick up some equipment. He appologised for doing so and I said that was fine, so he started chatting whilst he was searching through boxes. He was from the surgery team and asked me if I had been to theatre. Stifling a smile I replied that yes I had been, just a few times (I went every other day for a few weeks for my suction pump) and that I had had my transplant in January. “Ah so you must be Emily! Nice to meet you!” Alarmed at my apparent infamousness, I replied likewise, and we chatted for another minute or two before he returned to theatre and I had the remainder of my scan.

All went smoothly and finished promptly, and I returned to the waiting room where my sisters were sitting browsing the various magazines spread across the table. The whole thing took about half an hour which didn’t really seem worth it for the hour and a half journey we had just made, but it is a very specialized test and hey anything that keeps an eye on these lungs and keeps them working beautifully is fine by me! I should find out the results next week. As we left Harefield, the heavens opened, so we decided to sing “I’m singing in the rain” at the tops of our voices all the way back to the car, and arrived suitably drenched. Thanks to my sisters, I had a really good afternoon. It’s amazing what you can make out of a rather mundane chore when you have the right people with you.

Tuesday, June 19, 2007

At the weekend, a large group of girlies joined me to celebrate my recent engagement. One of them did point out that traditionally the groom-to-be is invited to any such occasion but I was in need of girly drinks so this small detail was swiftly swept to one side.

The evening was superb. This was not however due to anything I did – in fact my organization skills failed dismally from the word go. The first bar I told everyone to go to was closed when I tried to book it. I then looked up a different one, but it had changed it’s name, and the woman on the other end of the phone had a very heavy accent and after asking her three times for the name I was too embarrassed to ask again. On further investigation, I found a Spanishy sounding bar and decided triumphantly that this must be the one. We turned up there to find the man had no recollection of our booking. I was annoyed at this, as the lady on the phone had said the manager would phone me back to confirm and no one ever had. I pointed this out and firmly insisted that this must be there mistake. Credit to them they immediately set about creating a block of tables for our giggling girly party. It was only when he was putting the finishing touches to it that it dawned on me that we may or may not be in the wrong bar. By that time he had worked so hard to accommodate us I felt too guilty to leave, so we stayed, enjoying a fab evening of pina colada’s, sangria and tapas. Luckily the girls know me well enough to just laugh at me (and one even kindly reminded me to get someone else to organize my hen night).

Sitting there, surrounded by my friends, I just felt so incredibly happy and so so lucky. I haven’t been able to do the whole “bar” thing for years, well in fact I have hardly been able to do it at all, as the smoke has always been too hard to tolerate (come on July 1st) and by the time I was at Uni my lungs really were not complying with my need to go out and party. Honestly this year is a bit of a dream come true so far. Well minus the whole nearly dying bit right at the beginning.

A small group of us returned to mine for coffee and further laughter, and poor A arrived home to find a group of shrieking girls drinking coffee and clutching various wedding magazines. Credit to him, he merely offered to make more drinks and sat down quietly. Although if you ask me he wasn’t actually too fussed to come home to be greeted by a room full of rather lovely women…

I have heard from Harefield now and due to wheezing becoming slightly excessive now creating an eerie whistling affect, I am booked in for further investigations on Friday. My sister who has just finished Uni has volunteered to accompany me so I am sure we will have quite a nice day; there are some great pubs up there so a good lunch at least!

Work-wise we are still ploughing on with preparations to support National Transplant Week. We have a bit of a project currently being planned, which I will disclose as soon as it is all a bit more concrete. I am also currently helping these guys here; about time I gave something back to the NHS so I am more than happy to be involved. Yay for life!

ps - I was going to add please spare a thought for Emmie, who is having great problems with her port. However I have since been informed that due to its continuing disobedience and naughty behaviour, she has now named it Emily and consequently the whole team have taken great delight in referring to it as "Naughty Emily". I no longer feel she needs any pity...

Saturday, June 16, 2007

Very sadly, my friend who I spoke about in the previous post past away. My thoughts are with her family and friends and she will be greatly missed. It is sadly another huge reminder of how much work and awareness raising there is to be done.

Onto brighter things, I had the most fantastic day today! It was my mother’s school summer fete and I went along because not only have they been amazing and supportive of my mum since she started there, but they are kindly giving all the money from the Raffle to the CF Trust. Laurence Dellaglio opened the fete, I got to chat to him a bit, he was very friendly and posed for a pic and said he was in awe of what I had gone through.

I accompanied my mother as she set to work on one of the stalls, and I enjoyed it so much I took over her shift and stayed there. People kept worrying if I was ok or if I was wearing myself out but I just love to have something to do and be busy, and I think because I am so used to doing things running on empty I now feel a bit like superman (oh dear the superman complex that Harefield have warned against). It was lovely to chat to all the children, and the parents who have been so sweet and bought me presents after my transplant despite never having met me. The committee had all purchased LLTGL T-shirts and so there was quite a few of us sporting them dotted around the fete. The weather couldn’t make up its mind and kept thundering intermittently but it didn’t spoil the atmosphere at all.

Then as a massive favour to us, Richard turned up to draw the raffle and thank everyone for their support. It was the first ever time he has seen me without oxygen. I turned round to see him, ran at him and he threw his arms around me, lifting me up as he did so, exclaiming “did you just run?!”. I don’t think he could believe it is such a transformation. I chattered away (hard to believe I know) till he had to go but not before taking a video of me on his phone for Judy who he said wouldn’t otherwise believe it when he told her! I jumped up and down whilst he was filming just to demonstrate what a complete transformation it really is. It looks like I might be on their show again in the next month or so, so watch this space…

So yet again today I was surrounded by amazing giving people who just want to help and want to support me and my causes…people in this world are really pretty great when you look closely.

Tuesday, June 12, 2007

I know this is the second blog today but I just had a really great evening and wanted to share it. Also goes to show that life is made up of ups and downs, variety is the spice of life and all that. Anyway, one of the things I am most grateful to my parents for (I am grateful for a lot of things) is their peculiar habit of saving scraps of paper, letters, bits of work, drawings etc from throughout our childhood and filing them away in a huge metal cabinet. On Tuesday evening my sister and I dug out several of these files (for research purposes, I may or may not be writing...) and the results were hysterical.

All my school reports are in there, dating back from my very first primary school assessment. Weirdly, and for reasons I clearly cannot fathom, sentences such as “Emily sometimes talks too much” crop up rather frequently and throughout all my scholastic years. One of my favourite comments is actually on my year 7 report (I was 12 at the time) which says rather succinctly “Emily can sometimes try to take charge of a situation even when it is inappropriate for her to do so.” Slander, I am telling you.

In my middle school, there was a small box on the back where the pupil was encouraged to write a short self assessment of their academic progress so far. I appear not to have got the hang of that as aged 10 my progress report reads “I am kind (mostly!) and quite pretty”. Obviously no self esteem issues there then.

In all seriousness though going back through these files is a much treasured trip down memory lane, frequented with cries of “oh I had forgotten that” and “oh my goodness how old was I there!?” etc. I would strongly urge any parents out there to create these little folders (or memory boxes as I know some call them) as they are truly invaluable to go back through years later. This file also holds the answer as to how happy I was as a child, with the following sentence on yet another school report. “I am a friendly person and I have a happy life. I want to go on doing my best at everything.” Clearly my parents did something right then.
It seems to be another quite tough week for the CF community. I follow the blog of a girl in America who received a double lung transplant, rejected, then went onto receive a single lung transplant, then sadly rejected again. She died a few days ago, and messages of condolence have been pouring onto her site. She was incredibly brave and would talk candidly and openly about death and her feelings towards it. Reading other people’s experiences is helpful and useful as it allows you to feel you are not the only one going through these things. It also makes your experiences seem more normal and less frightening when you hear other people have been through the same and made it out the other side. However the bitter side of that is you watch people in a similar situation to yourself not do so well, and sometimes sadly die. It’s frightening yes, but I am sure it is frightening when anything that focuses your attention on your own mortality happens.

I received an email from a friend of mine today who has been waiting for transplant for some time. She informed me in a calm and dignified manner that she is now too ill to undergo the operation so is making the most of the time she has left.

It makes me sad and it makes me angry. It shouldn’t be this way. Even worse the friend in question had several false alarms, none of which ever came to anything. Thanks to the CF Trust and our Laughter for Life! gig, a new donor coordinator is being employed by Harefield to try and cut down on the number of false alarms caused by non viable organs. But why is this being self funded? And why is it not nationwide? As far as I am aware, in America they have these coordinators in all hospitals with ICUs, and when this was introduced the number of transplants went up threefold. I just feel disappointed for her and her family that this chance has been missed. She is as I said extremely level headed and I am sure she would not want any pity. Instead she is focusing on putting as much quality as possible into the time she has left.

Things with me are absolutely fine, I am happy and content and living a fantastic life. All this is only thanks to the gift of a stranger. It’s just another reminder to me really that I am just so incredibly lucky. Just because it happened for me does not change the fact that for 50% people waiting for double lung transplants it will never happen. National Transplant Week is coming up soon, hopefully there will be lots of media attention on the issue around that time. What about your work place? Could you do anything? Perhaps order a free box of UK Transplant stuff and have it in the foyer of your offices or something? Have a think…

(my that's a lot of weblinks. Check out who thinks she has mastered it)

Sunday, June 10, 2007

Yesterday was Ashtead Village day, where we had (very kindly) been given a pitch for free. I gathered together a team of helpers (bless their cotton socks) and the four of us set off for a 9.30 start. As well as a ton of info on organ donation and on CF, we had a few little elements to try and entice people over, such as a raffle, a win the teddy competition and mints (which sounds weird but really worked!) We had a constant flow of people around the table, some just taking donor cards, some stopping to chat, some with their own stories, others just wanting to hear ours.

The two most common myths which cropped up time and time again were:

“I’m too old”. This is nearly always incorrect. The oldest donor so far was 82. There is no age limit, instead they look at quality of the organs.

“I can’t donate I have asthma/diabetes/MS etc.” Again, incorrect, and frustratingly according to several of them their doctors had told them they could not be donors because of it. Whilst these illnesses could obviously affect organ donation, the only two illnesses which categorically rule it out are CJD and HIV.

Another very common phrase we heard all day was “oh I have been wanting to get one of these [a donor card] but can never find one.” This is almost certainly true, and it bugs me. Why is it so hard to find a donor card? And it really is. I don’t know of many shops that have them by the checkout, nor many doctors surgeries which is more worrying. Boots advantage card has a section where you can indicate that you are an organ donor which is great. The new driving licenses obviously, but there doesn’t seem to be a clear indicator on that (I think it is some number in a category or something).

I know the most important thing is for people to join the organ donor register, but I feel that for people themselves and their families, they want something tangible, something that verifies it for them. We had leaflets where you could just send the slip in to join the register, but many people requested “the one with the card on it”. In 1998 the BMJ published this article which talks about the idea of the donor card symbol being on a credit card. After all who doesn’t have a credit card? I have often talked about all store cards following Boots’ example because I don’t think I know of anyone who doesn’t have at least one store card, surely they could all offer the option “do you want to be an organ donor?” on the form you have to fill out?

Anyway grievances with national attempts at awareness aside, the only way forward it to talk to people about it and help them make an informed decision. We left Ashtead with 48 filled in forms to post, and loads more people took them away for themselves and for friends and family. We had a really lovely day, I had no voice at all by the end of it – had been putting my new lungs to good use by shouting about it to get attention! Hope everyone had a lovely weekend in this absolutely gorgeous weather!

Thursday, June 07, 2007

Today was an exciting day, for two reasons. First reason is, I went on a train. Again, sounding rather mundane there, but I haven’t been on a train in over 3 years. As my CF progressed and I got more and more breathless, climbing stairs and changing platforms became too exhausting, and once I was on oxygen it became nigh on impossible. But today, I took that next step towards being a bit more adult and restating my independence and got myself to Victoria (I didn’t want to go on the underground, worried about infection risks). I arrived in plenty of time (fear of being late) and wandered over to the ticket booth. As I was buying my ticket, I was thinking “I have two new lungs inside me and you don’t even know” which was highly self involved – I mean the man who was serving me could have had any number of things happen in his life that passengers wouldn’t be aware of…we never know what journey the person next to us might have had.

Taking my seat next to the window, I tried hard not to stare at other people, yet was fascinated, taking in all the little human details. I don’t think you very often get that close to strangers and become that close a witness to their little idiosyncrasies. An old couple, sitting side by side, bickering gently on which line they need to take. A harassed looking mother with two young children, who were taking it in turns to repeatedly ask where they were going and clearly not believing the mothers tired repetitive response. A young trendy girl, earrings and bracelets jangling, playing a game on her phone, a business man, chatting on the phone with one eye browsing the paper on his lap.

On arrival at Victoria, I was slightly overwhelmed by the huge bustling rushing atmosphere. Clealry I have been moving slightly in slow motion still (not hard when you live in a little town) and everyone there seemed to be on fastforward. I was early so browsed Monsoon for a bit (such a bad idea, nearly spent my taxi money on new shoes that I really don’t need but managed to resist) and then wandered over to the taxi rank. Sitting in the Taxi, I was desperate to blurt out “I got on a train and came into London all by myself!” but thought that was a)rather childish and b)may make him think I was weird. The journey was much shorter than I anticipated and suddenly I was there, staring at the doormen in their long coats and top hats, feeling distinctly out of place.

I tried to look assertive and confident and went to the desk to ask where I could wait. They showed me into a seated area with huge armchairs that a duke or duchess would be proud to own. There was a towering vase behind me with the biggest bunch (it can’t really be called a bunch) of flowers cascading out of it; I considered taking a photo but decided against it as I would look a tad touristy.

The meeting itself was with the Simone Cowland Trust, who are holding a charity ball to raise money for Foulis ward (the CF ward I have been treated on for most of my adult life, and that I lived on for much of the last year or so prior to transplant.) Last year they had Martine McCutcheon host their ball…this year they have asked Emmie and I. We are totally overwhelmed and deeply honoured, and are hoping that we will do them proud and help them raise loads of money to support adults with CF who can end up spending so much time staring at those four walls.

I headed home after the meeting feeling sky high, motivated and determined. I am hosting a stall at a village fete this Saturday where we will hopefully get some people signed up to the ODR, and raise a bit of awareness about our campaign and CF along the way. We can’t mend all the problems in the world, but we can do our bit to change it…

It may or may not have been highlighted that I failed to say where I went today. It was the Dorchester. Minor detail clearly.

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.