Saturday, 20 March 2010
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
Wednesday, 10 March 2010
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.
Monday, 8 March 2010
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.
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.
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.
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.
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)
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)
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
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.
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
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.