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.