Tuesday, 3 July 2012

Staying Positive...


As many of you know I had a routine clinic appointment two weeks ago which was pretty standard and my lung function was stable which is always good! However, there were a few additional issues that needed resolving the first being my sleeping problems... Being on a non-invasive ventilator overnight is both a blessing and a nuisance. On the positive side I am adequately ventilated so do not wake up with headaches and wake feeling generally rested. Conversely, it can cause me to really fill with air which leads me to become bloated and wake up with really painful trapped wind! This does pass though, with the help of peppermint tea! It also has a huge impact on my sleep (and consequently Luke’s sleep too!) so whilst I feel well ventilated after sleep, I can’t remember the last time I actually slept through the night. Rather than going straight for the hardcore prescription sleeping tablets I am going to try herbal over the counter remedies first and listen to audio books and so on. So far the herbal tablets do seem to be helping! 

Spring and early summer was really a very busy time for me and I was really grateful for this and all the distractions that it entailed. When the hustle and bustle fades however, I am left alone with my thoughts and the one thought that dominates all others is how desperate I am to receive a transplant. I know that I should focus on the fact that I feel generally well at the moment but I do panic and think that it doesn’t take a great deal to make me feel poorly – the slightest cold could potentially go to my chest and worsen my already poor lung function.  To keep my thoughts positive I’ve been thinking a lot about the developments in lung transplantation and the research that has been undertaken (and is still ongoing) to widen the quantity of lungs available for transplantation.  Firstly a procedure called, ‘Ex-Vivo lung perfusion’. To make a rather complicated and highly cutting edge procedure sound simple, this allows lungs that may have been classed as unsuitable, or perhaps ‘borderline’ for transplant a chance to examined out of the body and are, in essence, ‘reconditioned’. This is achieved by pumping a bloodless solution containing nutrients, steroids and antibiotics through them inside a protected chamber, outside the body. This research was even picked up by the BBC and they ran a piece on it – which I was asked to participate in! For those of you who have not seen the news piece, here is a link...BBC Ex-Vivo News Piece

Secondly, more transplants have been carried out using ‘donation after cardiac death’ (or non-heart beating donors). This is quite complicated to explain so rather than fill this post with medical jargon, a link which explains what ‘non-heart beating’ donation is, can be found here (Please scroll to the bottom of the page when the website opens). On both occasions where I had ‘false alarms’ for transplants, both potential donors were ‘non-heart beating’, therefore without the wider usage of this technique I would have received NO calls for transplant whatsoever. 

Another technique which has been discussed with me by the doctors at Harefield was transplanting the lobes of larger lungs into my body. As I am a small lady, with a lung capacity of about 4 or 5 litres, there is the possibility of having a lobe transplanted from a larger donor who perhaps has the lung capacity of approximately 7 or 8 litres. However, the lobe transplants would not necessarily be the preferred type of transplant as the surgery is inevitably more complex.

Whilst it is very positive that many developments have happened in this field, it is clear that so many more people need to make their wishes regarding organ donation known to their next of kin. It is National Transplant Week next week (9th – 15th July) and it is a real opportunity to take the time to discuss your wishes about organ donation with your loved ones. According to NHS Blood and Transplant, ‘Over 90% of families will agree to donation if a loved one is registered AND has discussed their wishes. This drops to around 40% if donation wishes aren’t known.’ This is a frightening discrepancy. I really implore you all to take time to discuss your wishes regarding organ donation! If anybody is interested in spreading the word about organ donation during National Transplant Week, the link below contains lots of downloadable posters, leaflets and web based materials to get the message out there! 

1 comment:

  1. I really hope you have a good night's sleep soon and that your lung function stays stable!
    This is such an interesting post, I don't really know that much about organ donation even though having CF I probably should haha!
    Thanks for your comment on my post, it was helpful! I never really thought about adding butter to veg, I'm gonna start doing that a lot more. I'm sooo fussy when it comes to supplement drinks, I only like Fresubin (always chocolate!) They're the ones that have the least calories, typical, awkward me! xxx

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