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Answers at last! and a special Thank you

Posted Dec 20 2009 5:24am
Thank you for all the amazing support I had towards my last blog. When I wrote it I was aiming for a purely cathartic experience after frustration built to epic proportions. It really helped me to vent,but I'm pleased it had such an effect on those who read it. It seems to have travelled quite widely via twitter and facebook. Thank you to everyone who wrote messages of support, who posted it for other to see and who signed up to the donor register as a result. It mean so much and helped me through a very bad time. I'm so desperate to help raise as much awareness as possible so that I and the 9000 others on the transplant list can get their Christmas wishes.
On to the Blog questions! Its taken a long time for me to answer but they are here at last! Hope the answers are ok to anyone who asked a question :) I really enjoyed seeing what you aksed and answering them, if anyone missed aout and wants to ask something feel free I'll answer anything posted. Here you are, enjoy!
I was just wondering what the hardest part of all this has been? Is it the false alarms and the false hope, or the times when nothing is happening?
I think without a doubt the times when nothing is happening are worse for me personally. As detailed in recent posts, although false alarms don’t mean you will get the real deal, are exhausting mentally, physically and emotionally, it makes me feel reassured and I’ll be honest, so elated even if only for a few hours. The reassurance that there are amazing people out there willing to give this gift and that I am getting matches really helps me keep the faith. Endless days without news get me down a lot.
At what age were you diagnosed and what are you studying at Uni?
I was diagnosed at age 2, my mum kept on at out GP who was very rude to her and refused to believe anything was wrong. Eventually I was sent to hospital and happened to have a bad cough while I was there, rang alarm bells with someone and I was tested for CF. Studying Childhood and Youth Studies as a degree at Uni, but the degree is made up of 6 individual courses at different levels. Confused you there I bet!
Have you had a lot of trouble with pain and/or pleurisy? I've had pain in my lungs for awhile and never really realized how painful lung disease can be. So I was just wondering what your experiences with that were and how you manage it.
I haven’t *touch wood* had dealings with pleurisy or severe pain like your describing. I imagine it would be incredibly frightening to experience. I do get lots of muscle spasming and pain in my chest and back but thankfully not to a bad degree like some people I know of. I had a muscle in my back do this last year and the pain was absolutely terrible! I used (and still do with aches and pains) hot and cold packs for small pains, TENS machine which I find very helpful, painkillers which I don’t like taking but if you need to you need to, heat lamp which is fairly good sometimes and massage. All effective to a certain degree, for me anyway. Hope your pain eases up very soon.
Just wondering if you have ever considered expanding your blog idea into a fully blown autobiography? You could write a brilliant book.
I’ve never really thought seriously about it, although surprisingly you are not the first person to ask! I would never imagine that people would want to read it to be honest! At the moment I would probably be too busy with uni etc but put it this way, if I was asked to do so by a publisher I wouldn’t say no! Never say never.
Do you ever get p****d off when you get referred to as a Cfer or in the gang, some reason it always yanks me chain!?
To be honest, it’s never bothered me! I suppose it depends from person to person. I can completely understand why you would hate it though, part of it does not want to be classed as simply a person with CF, too easy to label. I used to get really annoyed when people said I had a disease rather than an illness!! Just hated the way it sounded, not so bothered now though.
I am planning a post on my blog about Organ Donation and the importance of being on the register. Would it be okay if I placed a link to your blog on
the post?
Of course you can! I’m very honoured to be considered :) will have to hop over and have a look at your blog.
My nearly 16 year old son also has health problems and will need heart surgery. He is very negative with life at moment especially as every job he wants to do he won't be allowed to do, even after his surgery Just wondered what tips you could offer him regarding staying positive as you seem so inspirational. It is very very hard especially when illness prevents you from taking the career path you want to, it can provide something to keep you going through tough times, having a focus and end goal. First I would say are you definitely sure that the jobs he wants would be no go’s? Obviously I’m talking blindly on your particular circumstances, but sometimes you have to try looking at things from a different angle, eg, I wanted to go to drama school but was in no position to do so after some very down times when I felt I was just filling time, I decided to get a degree so I could move on to an MA in drama after transplant. I did some searching and decided to work with the Open Uni. Definitely worth trying some options or seeking advice. On a day to day basis I’m not sure I’m the person to ask as I have LOTS of down times, I think it’s natural. In terms of coping, having others in similar positions and that can truly understand helps lots! Maybe a heart condition support forum? It’s so reassuring to talk to others who understand. Having some hobbies to occupy time is a big coping strategy, I would be lost without “things” to keep me busy, my OU stresses me out but its something just for me unrelated to illness, and the stress of that can overtake the stress of if I’m feeling ill giving me a welcome new focus. Also knowing what is “zone out” time, to escape from when things are tough. For me its music someone pointed out it’s a kind of therapy for me and it definitely is. I can deal with my emotions through songs, and it helps me relax. Watching a film, exercise, reading, anything that helps you relax and again gives you a distraction. Realising that it’s ok to have down times so long as they don’t consume you is important to. I hope this helps a bit! I think you have my email address and you can always contact me on twitter etc if you want to talk.
I also love all musical theatre, apart from Phantom, which other show would be your fav? Phantom is number one and will always have a special place for me. Les Miserables would have to be my second favourite I think, love the songs, music and story. Blood Brothers is also fantastic! Have loads of musicals on my iPod just love them!
Do you ever feel like giving up on life? Honestly? No. There are times when I think I could, or it might come to it soon, I’ve even threatened it before and not seen how I could move forward. But in my heart I am too stubborn, and have fought too hard to just give up on life. When you struggle so much on a daily basis it makes you realise how precious life is. I’m blessed to still be here to keep fighting on, lots of my friends in the same position never got that chance, you don’t have to look to far to realise how lucky you are. Staying alive until that call comes is my reason for getting up each day, the reason I campaign to raise awareness of organ donation when I can, how I’ve faced/done things I never thought I would be able to and how I pull myself through the really hard times. I’m not ready for my life to be over yet and as I mentioned in another question I cope by imagining all the things still to come, there are so many many things I still want to do. I would also not give up on all the people who have worked so hard to keep me going to this point, dr’s, nurses, friends and supporters and mainly my wonderful mum who has been there every single step along the way.

Do you ever encounter difficulties with wheelchair access in public? Based on personal experiences, what recommendations would you offer to make life easier for wheelchair users of all ages? Yes is the short answer!! It is incredibly difficult to get around in a wheelchair. I would say the main advice is planning! You have to plan your journey a lot more, ringing/checking venues in advance seeing how accessible they are and everything along the way has to be considered. Access is a huge issue that I hadn’t considered until being faced with it, something that badly needs to be addressed in the future and I feel quite passionate about. Why should disabled people come second? which is how it feels when you can’t go where you want to. I would love to campaign against this in the future as I think its such an important issue.

Have you ever considered coming to the US for your transplant? is this even an option? I haven’t really considered going abroad for a transplant. I suppose it just doesn’t feel right for me. I’m not 100% sure of the technicalities of going abroad for transplant but I imagine it would be very involved with funding, travel arrangements etc. Although not impossible I don’t think I could cope with being away from my home, friends, family at such a difficult time.

What are the things which make you happiest?
What a lovely question! Well at risk of repeating myself theatre, musicals and music in general makes me happiest, I can escape from the world for a few hours. Watching a good film, hot baths with lots of bubbles (usually from LUSH, love their products) being with my nephews and family particularly my mum. I like to craft and make things from scratch. Pretty shoes, and getting dressed up cos I’m a girly girl! Spending time with my wonderful friends, even the ones I have never met doesn’t mean I’m not very very close to them, I can spend evenings chatting away on MSN (which brings me to the internet, very important to me as it keeps me connected when I can’t get out etc miserable without it!). Also all the support I receive on this blog, twitter etc really makes me happy, sounds corny but you don’t know how much of a difference it makes to feel supported and cared about, helps keep me going. As much as I stress about uni that too makes me happy in its own way, something I control and achieve myself without help, I gain lots of satisfaction from it.
Ok if you don't mind a question from someone new here goes... I'm a life long wheelchair user and I was find it surprising what people new to chairs make of it. So what surprised you most about using a wheelchair when you started? Also, because I love to read and ask everyone this Do you like to read and if so what's a book you recommend as great to read? Good question! I think as I said above the appalling access for wheelchairs especially on the underground system. Things like steps, lack of slopes, tiny lifts, narrow aisles in shops, non automatic doors and the lack of help you get from others. Another thing I had never considered was that while shopping you are at a lower level so cant see clothes, shelves, etc properly because your too low. And you’re on the perfect level to be hit by shopping bags! Reading, I love to read too but don’t get to read as much as I like with uni work to do. I love Gone with the wind the book, all the Harry potters, the Twilight saga, autobiographies, and recently my sister’s keeper had me in tears. Also love a bit of chick lit with the shopaholic series, love them!
This sounds a really silly, but when I’ve got a cold and it's all on my chest, I can feel it, is like that for you all the time? Not silly at all! Yes! I can always hear creaks, crackles, wheezes, sometimes very loudly! My mum can feel them if it’s really loud, she can put her hand where the noise is and feel the vibration. I always feel things moving about and tightness, soreness associated with colds. Never known any different and actually use these feelings to help with physio, sounds like im growling sometimes when I’m working my lungs hard! Lol!

Is it possible for a living person to donate one lung? Or is one no good? Do they have to be the same? People can donate one lung both as a living donor and after their death. Some people are only waiting for one lung. The criteria for any transplant is that the donor and recipient must match in blood group, tissue type, size (no good if lungs are to small or too big) etc. I am waiting for double lungs which means I can’t have a living donor. I wouldn’t be able to have just one lung as the infection levels in my CF lung would cause lots of problems with the immunosuppressant you need after transplant. In case you were wondering, my new lungs would never get CF, CF is a genetic condition so although it will still effect other parts of my body like stomach etc it will never be present in my new lungs.

Thank you for such interesting questions, hope I answered them ok! Take care will blog again before Xmas. xx
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