Friday, 13 August 2010

Reality of waiting for transplant

Apologies to those readers who will be upset/annoyed at this blog post but I am so pent up with emotion at the moment I have got to let it out somehow. I am so unhappy right now I can't even find the words to tell you, nothing has "happened" as such its just a culmination of every single thing making an overflowing load that is just too much to bear.Life is so unbelievably hard everyday and I just don't know how much more I can take of it. I hate myself for even admitting that fact. My body is failing me, breaking down in ways I didn't know were possible and reminding at every point possible that its doing so. I mind my diet all day every day to manage my diabetes, my back and joints and tummy ache often in synch with each other, I don't sleep properly and often have nightmares, I'm nauseous and sick each day, I am exhausted and breathless from the minute I wake up till the minute I lay down, treatment is taking over my entire life and thats the tip of the ice burg. The wedding was a treat, I hardly manage any special occassions, outings etc anymore and when I do I whacked for days after and have to suffer for it. I see events like Christmas and birthdays and they seem so far away. I convince myself that I will have had my transplant by then and will be able to join in properly but then they come and go and I'm still stuck in this limbo.Nothing seems to be going right at the moment, even silly things like buying new furniture or disputes with my uni over something I'm unhappy with are not straight forward and although they are little things they become huge when your life is as small as mine. I feel like I am being blocked at every turn I take, the changes I am so desperate for to make me feel as though I am on the right track just in one insignificant area of my life over which I have no control. I am asking for help, from GP's, doctors, evryone around me, it's not their fault that they don't have the drugs, lungs, answers I need to make things just that bit easier.I am trying so hard to feel better, to keep fighting but I don't know how to put one foot in front of another right now. Its as though everything is willing me to give up, as though they know I'm not supposed to still be here. I won't give up I haven't reached that stage yet but I can't keep this up without some change. "Helpful people" tell me I have to try harder and that things "don't matter/will be sorted out" but they dip in and out of my life knowing certain details and not the whole picture. They go back to their own lives. I feel really alone at the moment, no offence to anyone but its like they are a million miles from where I am now. The internet is my life line but also a curse, it keeps me in touch with others but also exposes me to people doing all the things I dream of while I can only watch with jealousy from the side lines.A wise friend said to me recently that serious illness inevitably has an effect on confidence and self esteem, it's certainly true in my case. I have no confidence in myself now and my esteem is at rock bottom. I feel that somewhere along the way I've lost myself, I never really had chance to find out who "me" is, for as long as I can remember I've had to make huge sacrafices for my health. I never feel happy with my appearance because I go for comfort, and never have the energy to be able to try things on properly. I don't like the person I've become always moaning, wrapped up in my health and putting a downer on everyone around me, I hate that person but can't pretend that things don't matter when they do so badly. Friends will tell you that I've been quiet lately and its because I don't feel like talking, bringing others down or putting on a smile and pretending all is fine. It sounds dramatic but I don't know why anyone would want to be frinds with me right now as I have no people skills or anything of interest to say.I'm sorry for such an out pouring of negativity on here. I needed to get it out somewhere and unfortunately you got lucky! Rest assured I am ok (I know, I know obviously not OK) but I will get back to more solid ground at some point hopefully soon. My life is a gift and whever I have a negative thought I DO remember that, even though it doesnt seem like it.
xx

Sunday, 25 July 2010

Get involved

Transplant week was a great success with lots of positive media coverage, tweets about signing the organ donor register and fingers crossed this will result in a lot of sign up's. My friend Jen and I appeared in The Mirror you can view the article here
LLTGL updated their blog with a different transplant related story everyday, showing the many ways that transplants touch lives. Rachy and I would like to say a big thank you to anyone who raised awareness or did something for transplant week, you're stars!
If you missed out but still want to help, it's not too late!!!
  • Send a tweet asking people to sign the organ donor register and include the link to sign up http://tinyurl.com/ldkrcz
  • Tell all your friends on facebook why it's so important to sign up!
  • Talk to people in you're workplace about signing up. Put leaflets or a poster in your staffroom to get them interested. You could even set up computers to the organ donation register so they can sign up then and there.
  • Do you write a blog? Why not write a post about organ donation and the difference it can make.
  • If you're feeling adventurous take up a challenge event/ make a donation/or have a fundraiser for LLTGL so they can continue their lifesaving work promoting organ donation and supporting transplant patients. Check out their website for more fabulous ideas for getting involved!

It couldn't be simpler to get involved and could literally be the difference between life and death for people like me. Leave us a comment and let us know what you've been up to!

x

Sunday, 4 July 2010

Transplant Week

Today kick starts National Transplant Week. As I'm still recovering from my lung transplant I'm going to be doing as much behind the computer screen as I can. So I thought I'd start here with some myth busting. It still surprises me what people believe about organ donation and it just inforces the fact that Live Life Then Give Life are needed to educate people and help get the message across. So here goes.

Myth:
If I agree to donate my organs, hospital staff won't work as hard to save my life.
Fact: When you go to the hospital for treatment, doctors focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation.

Myth:
Organ donation is against my Religion.
Fact:
All the major religions of the UK support the principles of organ donation and transplantation. However, within each religion there are different schools of thought, which means that views may differ. All the major religions accept that organ donation is an individual choice. NHSBT has worked closely with religious leaders of Buddhism, Christianity, Hinduism, Islam, Judaism and Sikhism to research and produce a series of leaflets explaining organ donation and religious viewpoints and principles. Which are available here.

Myth: I'm too old to be a donor.
Fact: The oldest donor to date was 104yrs old. In the case of cornea and some other tissue, age does not matter. For other organs it is the person's physical condition, not age, which is the deciding factor. Specialist healthcare professionals decide in each case which organs and tissue are suitable. Organs and tissue from people in their 70s and 80s are transplanted successfully.

Myth: I have a medical condition and I'm too ill to be a donor "people wouldn't want my organs".
Fact: Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Only medical professionals at the time of death can determine whether organs are suitable for transplantation.

Myth: Carrying a donor card is all you need to do to be a donor.
Fact: Cards can and do get lost or damaged and you may not be carrying yours when you are taken to hospital. Adding your name to the register is a more permanent way of expressing your wishes. You can still carry a card if you wish to. And most importantly don't forget to tell your relatives and loved ones what your wishes are.

Monday, 31 May 2010

Rachy update

Forgive me for shameful lack of blogging recently, I am a terrible Advocate! I've been struggling myself recently and finding it difficult to cope because of various things, so haven't been as talkative as usual.
However I do have some fantastic news about my fellow advocate Rachy that I had to share. On Friday she was allowed to leave hospital and start out on her brand new life, isn't that amazing?! From arriving at the hospital to have her transplant, breathless, on oxygen, in a wheelchair, and nearing the end of her life, just a few months later she has been transformed to someone who walked out of the hospital, tube and wheelchair free, with endless possiblities ahead of her. That is the miracle of transplant, I can't say it any clearer than that.
I'm sure Rachy will be along to update you all herself very soon but I wanted to let you all know how well she has done and send big hugs and kisses from all of us here.
xxxx

Wednesday, 14 April 2010

The other side of the story

video

It's been a while since I updated once again, life has been a bit hectic lately and I've been getting very tired so blogging has unfortunately suffered. I will definately post about all thats been going on since last time very soon, but today I want to discuss the recent negative stories about organ donation in the press.
On Sunday morning I heard the story on the news and my heart immediately sank. Some donors (those who signed up via their driving licence application) had their wishes recorded wrongly onto the system. Although they had given their consent for their organs to be used after their death, the information about which organs could be used had been wrongly listed. Obviously my heart goes out to those donor families that have been affected by this news. It must be very traumatic for them to hear and to inevitably relive the experience.
In my position it is always so gutting to hear of a negative story that may adversely effect people deciding to donate their organs. There have been conflicting reports in the papers and that doesn't help either, it is completely understandable that readers take it at face value and think "maybe donation isn't for me". Unfortunately what the papers in the most part dont show you is the thousands of people like me whose lives depend on organ donation, those who are waiting and dying everyday. It doesn't tell the public that 3 people waiting for an organ die each day because of the pure lack of donors. It doesn't tell you that you are more likely to need an organ than to donate one.
I want people to have both sides of the story in front of them and to make an informed decision. That is why when GMTV phoned and asked me to appear on Mondays show (yes, 2nd time in under a month!) I jumped at the chance despite feeling pretty rough. It gives the public another view, another side to the story. You can view my interview above.
The NHSBT service are contacting anyone effected by this error to ensure that the information they have is correct and complies with patient wishes. The mistake was made over 10 years ago and the new systems in place are working to prevent this ever happening again. See the link here for LLTGL's post on the basic facts of the story.
Please pass this post on to as many people as you can to give them an insight into what life is like being dependant on someone else to allow you to live. I really hope that the damage caused by this story will be limited and that people will still be willing to donate the gift of life that so many people are hoping for.

Saturday, 20 March 2010

GMTV and update on Rachy

Hi all,
Rach is doing well at the moment after a tiny set back early on. Her friend Pete is updating her blog as and when he gets news (and does a better job of keeping everyone up to date than I ever could) Check it out here I'm so pleased that Rachy is doing well, she really was desperate for those lungs to come and they did in the nick of time. It does take a bit of a toll however on those still waiting, while you are so happy someone else got their call you still find it hard that you're stuck in the same position, waiting on that call. I am finding that a lot of the people who were on the list when I first went on have either passed away or got their calls and are living life to the full. It does make it quite hard to stay positive as I feel like I've been left behind and am in constant doubt over which staistiic I'll be part of. I am of course over the moon for Rach and really hope she continues to do well and is up exercising those shiney new lungs soon!
I was asked to do a tv appearance this week and was on GMTV on Thursday morning talking about the importance of organ donation. I have had loads of great feedback and am so pleased that it has touched so many people. GMTV reported the next day that the Organ donor website had recieved double the amount of hits as a result. It has made me determined to keep spreading the word as much as possible. Doing the interview has really effected me health wise. I had to get up at 4am and exerted myself more than usual and as a result have completely lost my voice from over exersion! It was worth it though. A few days rest will hopefully sort me out. I'm up to my transplant hospital for clinic on Wednesday so fingers crossed all is well for then. I'll leave you with a copy of my interview to watch xxx
video

Wednesday, 10 March 2010

The greatest gift of all.

Today, desperately ill Rachael Wakefield got her call for new lungs.

We won't know anything more till tomorrow and the first few days are critical; please keep her in your thoughts.

Of course most importantly, please think about the wonderful family who said yes, and their loved one who signed the Organ Donor Register.

x

Monday, 8 March 2010

BBC news

Register as an organ donor online by clicking here - it only takes two minutes.

With thanks to BBC Northwest for allowing us to share this piece

After the BBC heard on Wednesday that my time was running short they felt it was time to do something and asked if I thought I would be upto filming. I hesitated, talking, moving and concentrating are not easy tasks anymore but I could not sit back and let this one pass me by. I agreed and they came round and filmed the above interview on Thursday. I won't lie it wasn't easy to talk about the fact that I am now pushed for time on camera knowing it would be beamed across the North West but I felt it was something I had to do and despite becoming a bit teary I managed it. The BBC team were very compassionate and made it that bit easier.

I just hope it will make a difference and if it doesn't in time for me that it will for someone else. That is why I do what I do, I know whilst I'm still alive I'm one of the lucky ones but my luck is running out.

Rach x

A day in my life

Both Rachy and I have mentioned our heavy treatment regiemes in previous posts. I thought I'd share my daily routine with you so you can see the kind of things I have to do each day. I will put the number of tablets in brackets and try to give you an idea of timings too.

Morning
As soon as I get up I do my Ventolin nebuliser to open my airways and help make my breathing abit easier, I often feel very tight,wheezy and shut down. This is followed by a steroid inhaler to help reduce inflammation.Then I do physiotherapy which I need to help remove the mucus that clogs my airways and causes infection. My nebuliser and inhaler combo open the airways so its easier to get the mucus out. My morning session is chest percussion performed by my mum and basically involves me laying flat and having my sides patted with a cupped hand to "knock" the mucus out while I do breathing exercises to aid this. Next another nebuliser this time an antibiotic to fight infection.
My morning tablets consist of about 5 tablets - Phyllocontin – helps to open up the airways, and 3x tablets to control reflux and stomach acid. All of this takes around an hour or so to complete.

Mid Morning
During the morning I usually end up doing another session of physio if I feel that i need it (30-40minutes), this time I use a pari pep, a device that I blow into against a pressure to help force mucus out of my lungs. I often combine sessions of physio with steam inhalations too as they help to loosen the mucus and to make my chest feel less dry,usually 4-5 inhalations per day.

Lunchtime
I take Creon capsules everytime I eat, having CF means I can't produce my own digestive enzymes to break down my food so these do it for me. Amounts depend on what I'm eating but usually 10-12 with lunch and around 40 per day as a whole! I also have to take extra vitamins because I don't absorb them from my food so another 8 tablets including liver tablets as I have liver disease (a compliaction of CF). I am a borderline diabetic (again a result of CF) but at the moment I can control my sugar level via tablets x2 before a meal. Mealtimes can often take a long time because I often have a poor appetitie. I take my blood sugar levels 2 hours after meals to check they are in the normal range.

Afternoon
I do another physio session and a different nebuliser called Dnase which liquidises the mucus in my airways.I repeat my Ventolin and symbicort and antibiotics as above and take
Doxycycline and oral antibiotic and Azithromycin to reduce inflammation (x3)

Evening
With my dinner I take Creon 12-14, vitamins, Ursadeoxycolic acid (x8). It's nearly the end of the day. Before bed I have to take Anti reflux drugs, airway opener, antihistamine (x5)

Overnight
In order to keep my weight at a good level for transplant I have to feed overnight to get some extra calories,this is done via Nasal Gastric feeding. I push a thin tube through my nose, down my throat and into my stomach which is then hooked up to a drip feed of high calorie liquid. It is fed slowly into my stomach during the night. In the morning I pull the tube out (not painful) so I can feed normally during the day. I will usually have to get up during the night in order to turn the feed off etc when its finished.
In total I take around 75 tablets per day.

So thats my day in a nutshell! Its quite a heafty list and one that seems to grow and grow as my condition worsens, I often do an extra physio session etc if i need to. I am now using my inhalers 4 times per day in addition to the times listed above as my lungs are feeling so bad. As rachy and I mentioned in our first post we are also battling the constant stream of small things such as stomach pain, headaches, lethagy, nausea, breathlessness,the effects of highs or lows in sugar level etc. It takes a huge portion of my day and includes tasks I haven't even mentioned such as dressing and washing taking a long time due to breathlessness. I need help with all my meds and day to day tasks as I get so tired. If it wasn't for my wonderful mum I just couldn't manage, she helps me SO much throughout the day (and sometimes the night) but is often drained by it all too. I also use oxygen 24 hours per day and a wheelchair when i go out anywhere which needs getting ready in advance or I simply can't go out. It doesn't leave much time for anything I actually want to do such as uni work. I often feel as if the illness is getting bigger and I'm getting smaller.
I hope this gives people an insight into what life with CF on the transplant list is like each day.

Tuesday, 2 March 2010

hard times

I had transplant clinic today. Recently I've been feeling a bit rotten to say the least, no energy, no appetite, a blank mind, low oxygen levels and a fast heart rate. This morning I felt like it was a struggle to even move any distance. From getting up to take my medication I had to lie on my bed before I could even think about getting dressed. I felt so bad this morning that I honestly wondered how much longer I could go on for. With help I managed to do what I needed to and go to transplant clinic. Once seated I rested my arm on a TV stand and closed my eyes from exhaustion of getting from the car to the waiting room. One of the transplant co-ordinators came to take us round to see my consultant and a look of concern instantly came over her face. The appointment was quite brief with a quick summary of what’s been happening, how much I now need my NIV and how much pressure its taking to inflate my lungs and how unwell in general I've become recently.

To sum things up, my time is running out. Without a donor, I'm going to die, soon.
As difficult as it was to hear that I was in that much of a haze from how unwell I'm feeling it didn't have that much of an impact because I thought 'yeh how I'm feeling right at this moment I can believe that'. I left with the image of my consultant crossing his fingers; he was crossing his fingers for my life because that’s all he can do now. In the waiting room on the way out I broke down into tears.

Please, if you believe in organ donation sign up to the register it takes literally 2 minutes and you can do it online, my life and the lives of thousands of others depend on it.

Rachy x

Manchester NHSBT roadshow

Left to right: James Colbeck with mum Lynn Colbeck, the tin (wo)man, Lynnette Wakefield, me (in wheelchair) Sarah Higginson holding 8wk old Edward Higginson, Holly Shaw, Jonathan Higginson and Donor Transplant Co-ordinator Dawn Lee.

On 19th Feb I got the chance to attend the NHS blood and transplant roadshow. The organ donation campaign took to the road and was visiting cities across the country. I was invitied along with LLTGL advocate Holly, James & Lynn Colbeck and the Higginson family to promote organ donation at the Manchester roadshow. Before hand I got an email explaining who the attendees were. James had received a kidney from his mum Lynn and is now fit and healthy thanks to her gift. He scooped 3 gold medals last year in the british transplant games, find out more about his story here. The Higginson family are a donor family.
I've never seen organ donation from the other side of the coin. I've been friends with people that have died waiting for organs and thought how unfair it is and how critical it is to get more donors signed up but I've never met a donor family, never had a chance to talk to them and it was an eye opener. Sarah and Jonathan lost their 10 yr old son George last August and 6 of his organs went on to save the lives of 5 people.George Higginson
I got a chance to talk to them about George, look at pictures, hear exactly what happened. In Jonathan's words "George was not your run of the mill kid at all, he was very different in so many ways. He was known at school as Overtons little scientist. Both Sarah and myself did worry about George's vulnerability with life. For the two weeks prior to his accident, I felt that George was going to be taken from us, and the feeling was getting stronger up to the point he left us. I think his purpose in life is far more outreaching than the 5 lives he saved from his wish to be an organ donor". At just 9yrs old George had expressed a wish to be an organ donor should he die after seeing a medical program on TV, infact he asked why people wouldn’t want to donate their organs... At age 9!George enjoying the football
From what I heard about him he certainly seemed like one amazing little boy. After we'd done a few hours on site at the roadshow, we jumped into taxi's and were taken to the BBC studios for a local news report on organ donation (you can see that here).
As the others were being filmed Sarah and Jonathan told me about George's accident. George was crossing a road on his bike, the first road he'd ever crossed by himself. He never made it to the other side. He was knocked over by a pick up trick, he was placed on life support in an intensive care unit but it was later confirmed he was brain stem dead. Jonathan and Sarah spoke of their relief that George got the chance to be an organ donor, that something so positive was come out of their tragedy. When filming, I sat behind the scenes watching, as Sarah struggled with one of her sentences whilst talking about her son and filled up a little on camera I burst into tears.They talked about George with more pride than I've ever seen, they are so very proud of him and the difference he's made to the lives of 5 strangers. For me, on the list, it was slightly surreal to meet them and gave me more understanding about what organ donation means to donor families, I feel privileged to have met them and heard all about their amazing and gorgeous little boy. I'll leave the last word to Jonathan.
"Meeting people like yourself makes me so very proud of my sons gift, and if we can get the message across for everybody's wishes to be registered, then your wait will be greatly shortened". What an amazing family. If you support organ donation, like little George did at age 9 prove it, register online.
The roadshows have now come to an end they resulted in 7000 people signing up and many more taking away leaflets.
Pictures and permission to share George's story obtained from the Higginson family, please do not use without permission.

Saturday, 27 February 2010

Control

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

Introductions

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