Monday, 17 October 2011

A Spoonful of Sugar...

My guilty pleasure, as some might call it, is eating a whole brand new pack of juicy, shiny Haribo sweets... The cherries in particular really float my boat. Eating these was a great way of helping me through lesson planning and marking in my early days as a teacher. They were also a  helpful tool in helping me meet my 3000 calorie a day target! However, shortly after all of the tests which I had to undergo to assess my suitability for transplant, I was told that I had developed Cystic Fibrosis Related Diabetes (CFRD). Now, you may think that being told you need a lung transplant to survive and having lived with CF for my whole life, being diagnosed with CFRD shouldn’t be that much of a big deal for me? WRONG! I have (or used to have) such a sweet tooth, it’s quite unbelievable. I used to have cups of tea with, dare I admit, 3 sugars, as well as chocolate, sweets, biscuits... oh the list could go on! 

CFRD is a unique type of diabetes as it combines the characteristics of type 1 and 2 diabetes. In CF sufferers the thick secretions can eventually damage the hormone-producing cells, causing insulin deficiency. In addition to this some of the drugs I need to take to control my lung symptoms, steroids in particular, can cause CFRD to develop. I am fortunate at the moment, as I am able to control my CFRD by using diabetic tablets that stimulate the pancreas, but it is likely that in the future I will need to start using insulin injections, or an insulin pump. The diet for people with CFRD is a lot different to the usual calorie restricted diet for those with type 1 and 2 diabetes. I am encouraged to maintain my 3000 calorie a day diet and am still encouraged to eat sugary foods. I just need to be careful. So I no longer have sugar in my tea or gorge on sweets alone. I need to make sure that if I want to eat something sugary, I do so with a main meal, so that my body doesn’t have to deal with a large influx of glucose at once. I check my blood sugars regularly, using the finger pricking system just to check that my blood sugars are at a reasonable level after eating. There are a plethora of reasons as to why it is important to effectively my control blood sugar levels, but for me, high blood sugar levels can ultimately lead to more destructive chest infections. 

Tragically CF is a multi-system disease which means that many different organs are affected by the thick sticky mucous produced by the body. As well as the lungs the digestive system is also affected as the pancreas is clogged with mucous, which means that it cannot release digestive enzymes or insulin needed for me to absorb food effectively.  Every time I eat food, I need to take pancreatic replacement enzymes called ‘Creon’ – I take about 10 of the beasts with each meal. There is probably a large amount of Creon in the houses of in the south of England as I have a tendency to leave pots of it at friend’s and families’ houses! When I was younger and ‘unable’ to swallow tablets (well – more accurately, just being a pain the butt child) Mum had to break the capsules open and mix the little granules with chocolate pudding so I would eat it, so that I could then eat my dinner! Now I just swallow all the tablets at once! More deliciously, there used to be a digestive enzyme powder that could be sprinkled onto the food – and as it took me so long to eat when I was a toddler, it would start to digest it before my very eyes on the plate!  Another way in which CF has affected my digestive system is the chronic reflux I used to get as a teenager. This was the result of the side effect of some of the drugs I take as well as the persistent coughing. Consequently, the cells in the lower part of my oesophagus have changed to represent stomach cells – as there was so much acid present in it, this condition is called Barrett's oesophagus (sounds sexy, doesn’t it?!). As a result of this, I have required two yearly endoscopies since my teens, to check that the cell changes have not become cancerous. I’ve become quite accustomed to these scoping sessions, so I’m not even sedated for them anymore; I just have a throat numbing spray! I think the doctor’s get more freaked out by the procedure than I do – as it can be quite risky performing it on somebody with such cruddy lung function! 

In recent months I have also developed osteopenia, which is where my bones have started to become thin. This is due to many factors including the use of those pesky steroids, as well as infection and my immobility due to poor lung function. This can ultimately lead to osteoporosis, but this is currently being controlled. CF can also cause liver disease, as well as problems with the bowels, but I am fortunate not to be too badly affected by these problems. 

Cystic Fibrosis is complex disease, but is in essence a recessive genetic disease, which means that both parents must carry a copy of the faulty CF gene.  If both parents carry the faulty gene (like mine!) they have a 1 in 4 chance of having a child who is affected and an equal chance of having a child who is not affected or a carrier. Whilst I am the one in four who is affected, my jammy brother is the other one in four – he doesn’t have CF or carry the faulty gene. As part of this blog I want to raise awareness about CF as it is one of the UK’s most common life-threatening inherited diseases, which affects approximately 9,000 people in the UK. At the moments, statistics say that only half of the people currently living with CF will live past their late 30s. The CF Trust is currently funding gene therapy research, which will replace the faulty gene with a working one. Sadly the research has been badly affected by the ‘credit crunch’. Take a look (if you’ve time) at the link to the ‘One Show’ which aired last week, discussing this.  

CF is most well-known for the respiratory problems it causes and this is the part that will radically change for me if I am fortunate enough to receive a double lung transplant. As CF is a genetic condition the rest of my body will still be affected by CF, but my new lungs will be CF free. Although it may sound like I’ll still have a lot to contend with, having a decent pair of CF-less lungs will be amazing – no more chest physiotherapy, as there will not be the sticky mucous in my lungs clogging them up. If the transplant is successful, I will just have so much more energy and managing the other symptoms of my CF will be easier. 

People often ask me ‘how I cope’ or ask me how I can be such an upbeat person, but the real question is, ‘how can I not be?’ Yes, I have a lot to deal with, but I deal with it with a loving husband family and friends fighting with me every step of the way. My faith also helps me greatly. Psalm 73:26 ‘My flesh and heart may fail, but God is the strength of my heart and my portion forever’.

Friday, 7 October 2011

A Difficult One, I Know...

Tuesday night television doesn’t often bring Luke and me to tears. However, after watching the BBC1 programme ‘Transplant’ we were sobbing our hearts out. In short, the programme followed the journey of organs from a donor to several recipients. My family and I are fairly knowledgeable on this subject (well, regarding lungs anyway!), having had one unsuccessful transplant call and many discussions about the subject. Yet seeing it on screen ‘for real’ was really quite emotional. I was particularly touched by the donor’s family and their willingness to share their experience. The main crux of the programme was the need to raise awareness and general profile of organ donation and to educate people about it.

According to various statistics, 90% of people are supportive of organ donation in principle and there are currently 17,751,795 people on the Organ Donation register as of March 2011. However, a report by the Organ Donor Taskforce (2008) revealed that ‘the actual donation rate in the UK remains poor, and in part this is a consequence of the 40% of relatives who refuse to give consent for donation’. I do not want to sound critical of anybody here and I can completely understand why relatives would refuse consent. They have just been given possibly the worst news of their entire life, and then they are asked to make a massive decision at probably pretty much the same time. The real issue is that whilst many of us agree with organ donation in principle, have we ever made our wishes known to our next of kin? In all honesty, unless you are faced with the prospect of either needing a transplant or having to honour the wishes of a loved one and give consent to donate their organs, it’s not something that generally comes up in conversation.  My family and I discuss it fairly frequently (as you can imagine) and we all know that without a doubt we would want our organs to be donated wherever possible. One of the main issues that prevent people from discussing organ donation is the reluctance to face one’s own mortality. Nobody likes to think about dying, so it’s not a conversation that comes easily.

As I mentioned in my previous blog, waiting for somebody to die so that I might live not only fills me with an awful sense of guilt, but also a sense of responsibility. When I was waiting to hear whether the lungs were viable for transplant, I was filled with a sense of overwhelming gratitude. It must have taken the donor’s family such courage and selflessness to honour their loved one’s dying wish. I confess I did get quite upset at one point, but the transplant coordinator really kindly pointed out that it is not as if I wished this on an individual, I was potentially allowing somebody to fulfil their dying wish and allowing something positive to come of an awful tragedy.

As a teacher I know that in order for an individual to learn they must be given the facts and given these in a way that they can access and therefore understand and apply to their life. If organ donation is not discussed and the facts about it presented in a way that people can understand it is always going to be an issue which people know about but don’t really understand! (A bit like long division for me – don’t tell any of my fellow teaching colleagues!) Awareness is being raised and many popular television programmes feature organ donation regularly. Those familiar with the show ‘House’ will be aware of Dr. House’s unorthodox manipulation of the transplant list! However, this and many other programmes still fail to point out the importance of telling your next of kin that you wish to be an organ donor. This is why we were so excited to hear about and subsequently watch the BBC programme ‘Transplant’ as it was a candid portrayal of the many aspects of organ donation. The programme also expressed the importance of organ donation becoming more of an integrated part of our culture and become something that isn’t difficult to discuss.

I live life to the full and don’t live it expecting a new pair of lungs, but I am grateful to those who are willing to donate their organs and God willing I will be one of the lucky ones who receives such a wonderfully generous gift. I don’t feel anger or resentment to those who choose not to donate organs or to those who do not give consent for the use of their loved one’s organs my only hope is they are making an educated and informed decision. Those who decide they would want to donate their organs after their death MUST ensure these wishes are known to their next of kin. A conversation that may be facilitated by sharing this blog and probably not one bought up over Sunday roast! Waiting for an organ has revealed how little is widely known about the many facets of organ donation. The primary aim of this blog is to make people aware of the desperate need for organs and by discussing this openly in one’s life, the decision that families may face is made significantly easier.  

PS - The 'Transplant' programme is available on BBC iPlayer click here to go to it! 
PPS - If you're reading this and the programme is no longer available, or you are of a squeamish disposition the charity Live Life Then Give Life has some great testimonies from both sides of the organ donation experience.