Saturday, 27 February 2010


It's the first time I've had chance to write a proper blog since becoming an ambassador, many thanks to Rachy for getting things started!

The reason for lack of writing on my part is that I've had an essay due in for Uni. I've always wanted to get a degree but wasn't well enough to go to uni when the time came. When I had to give up work due to my health I decided I needed something to replace it, I'm the sort of person who copes by being kept busy and I wanted something to fill up all my spare time. So while I wait for my transplant I am studying for a BA with the Open University. It has been a real godsend to me as my work gives me something to focus on and makes me feel like I'm working towards life after transplant. At a time when almost everything in my life is consumed by my illness, constant treatment, controlling symptoms or attending hospitals, it is the one thing that remains "for me", me working for myself, and any results I get are down to my own ability. Studying has become very important to me, even though 2 and a half years down the line waiting for lungs, it is becoming harder, with the ever increasing regiemes of treatment and times when I feel too ill to do my work.
I do find it stressful but in a weird way its nice to have something "non medical" to stress about!

Another reason I enjoy my study so much is that it is something that lies within my control. Waiting for transplant can often feel like virtually everything is outside of your control. Life has changed dramatically, how you feel bodily, the things you can no longer do at all like going certain places or being independant, constantly having to have assistance with tasks a 5 year old could manage and the fear of what will happen next. It is a very tough ride to put it mildly. I have been waiting for 2 and a half years now and I fully realise that statisiticaly I shouldnt even be here now. Things have *touch wood* remained more stable than i could have hoped for, however while outwardly things seem ok, inside I can feel them changing. As someone said to me recently " You're doing 3 times the amount of work just to stay the same". Slowly I am seeing things I used to be able to manage getting more and more difficult, I'm often exhausted and breathless from doing very little. It is very hard not to be frightened by this and worry about whats going to happen. Sometimes I feel as though I am trapped and theres nothing anyone can do to help me. The last few weeks sum that up, I have been trying to get something to help me out with how I'm feeling but realistically there isn't much that can be done right now.
Thats why my other form of control is to speak out where ever I can to get people thinking about organ donation. It is the only thing I can do to help myself and others get nearer to that life changing call. I'm so honoured to be able to work with LLTGL and the wonderful Rachy to tell our storys and get people signed up to the organ donor register.
Hopefully one day very soon I'll be rnjoying the fruits of my labour in more ways than one.

Sunday, 21 February 2010

Inside Out (UPDATED)

Here is the link to view online, the organ donor piece starts 10mins 30 into the programme. Think its only availiable for a few days so watch it while you can!

Hi all,
Hoping to write a longer blog very soon but just wanted to let you all know that a piece I filmed for BBC 1 Inside Out London is going to be shown tomorrow (Monday 22nd) at 7.30pm. For those of you not in the London area I will post a link to view it online very soon. Basically the half hour show deals with 3 stories and the piece that I feature in lasts about 10 minutes and shows different angles and stories from the whole process of organ donation. I probably wont feature very much but I think it will be a fantastic and emotive piece about the good that donation can do.
Tor x

Wednesday, 17 February 2010

Going to clinic and being seen regularly by medical teams is now something I'm very used to. Since going onto the transplant list I've had appointments 2-3 times a week, at the moment it almost seems like a full time job. It takes me 1.5hrs to get up, take medication, nebulisers, inhalers, mum helps me to get dressed and washed, I sort out medication I need to take with me for the day whilst she fills up my liquid oxygen cylinders which allow me to leave the house. A 20 minute appointment could mean we're out of the house almost 3hrs due to the time everything takes, how slowly I have to do things and how much equipment I need.

Today I had clinic to check on the oxygen and carbon dioxide content in my blood and also to check how I'm getting on with my ventilator. I have blood taken from my earlobe because it's oxygen rich (arterial) there and this tells doctors how much oxygen and how much of the waste gas, carbon dioxide, there is in my blood stream, the more oxygen there is the better my lungs are doing, when the carbon dioxide is high it's a sign of how diseased the lungs are. We talked about how much I was dependent on the ventilator now, alot more than I was. This is not a good thing, it means my lungs are becoming less and less efficient and more diseased. On the postive note the ventilator is making a difference, I would be in a bad way without it now. My doctor can do nothing more for me on the ventilator side of things and he's going to have a chat with my transplant doctors and make sure they're aware of what's going on. Just a typical appointment really!

On Friday I'm hoping to make it to the NHS blood and transplant roadshow in Manchester. The new organ donation campaign has taken to the streets in a bid to get the 96% of the population that believe in organ donation to prove it and sign up to the organ donor register. There will be local press attending the roadshow and provided it doesn't actually snow (!) the turn out should be good. I've been asked if I'm happy to be interviewed at the roadshow, last time I was interveiwed by local press my story made quite an impact and as result 3000 people in the North West signed up (you can view that article here).
Will keep you posted on that one!
Rachy x

Tuesday, 16 February 2010


We thought it was about time we introduced ourselves, properly. Rachael 22yrs old (or will be on the 22nd Feb anyway!) from Cheshire and Victoria also 22yrs old from Essex. We both suffer from incurable lung disease, Tor from the genetic disease Cystic Fibrosis (CF) and Rachy from a rare interstitial lung disease (ILD) and we are very honoured to accept our new roles within the charity Live Life Then Give Life as patient ambassadors. Part of our role is to blog about the ups and downs of every day life on the lung transplant list, in the hope that putting faces to stories and statistics will make them more real to the public.

Tor was born with Cystic fibrosis and diagnosed at 2 years old, after a relatively normal childhood with CF during her late teens it progressed to end stage and she has now been waiting for 2yrs 7 months for a double lung transplant. She has had 3 false alarms, a situation where Tor is called to the transplant hospital, prepared for transplant and for various reasons, often the lungs aren’t good enough, are damaged or just aren’t a good match the transplant is cancelled. A heart breaking situation for everyone involved but one that is common on the transplant list. From day to day Tor struggles a great deal with every day tasks; she requires constant oxygen to help her to breathe and is plagued by fatigue and pain.

Rachy went onto the lung transplant list in November 2009 after a long and complex battle with various other health issues. Rachy had a normal and active childhood; her only aliment being mild asthma which never stopped her doing anything she wanted to do. In her early teens she began catching frequent chest infections which led to irreversible lung damage and by the age of 15 she was oxygen dependent. Top doctors from all over the UK struggled for many years to accurately diagnose Rachy’s lung disease and then towards the end of 2008, after many years of being ill with ILD but stable the disease began to progress rapidly and Rachy went into end stage respiratory failure, she was admitted to a hospice where she was expected to die. Transplant had been previously dismissed as an option for Rach because doctors were not able to diagnose her lung disease properly. The fighter that she is she did survive, her doctors decided that they couldn’t officially name the disease which is now thought to be autoimmune (her immune system is attacking her lungs) but that didn’t matter and she was eligible to go onto the lung transplant list.

For both of us now every day life revolves around what seems to be an endless routine of medication and antibiotics, nebulisers, inhalers, oxygen, wheelchairs, chest physiotherapy, for Tor over night calorie rich feeds via a feeding tube to keep her weight up, for Rachy non invasive ventilation 20hrs a day to help her physically inflate her stiff lungs and for both of us painkillers to help keep us comfortable. For us now a lung transplant is our only hope, it is the only way we are going to survive. Part of our acceptance into this role was because statistics say that one of us is going to die waiting. 50% of those currently on lung transplant lists die before organs can be found. We want to change that, by putting faces and stories to those statistics we hope that it will encourage more people to sign up to the organ donor register and this blog is going to be part of that. From now on we’ll post individually about our daily lives on the lung transplant list; we hope to be able to take you through our transplants and on our journeys back to health and life.

Rachy & Tor x