Let me introduce you to my friend Jill, she’s 24 and from Rush, Dublin, Ireland.
Beautiful isn’t she? This is Jill feeling well and all dolled up, just like any other girl her age for a night out with her family. But there is something about Jill you don’t know. Jill suffers from cystic fibrosis and is currently on the organ donor list!
According to the Cystic Fibrosis Trust (http://www.cftrust.org.uk/) Cystic Fibrosis (CF) is one of the UK’s most common life-threatening inherited diseases. It is caused by a faulty gene that controls the movement of salt and water in and out of the cells within the body. Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
Over 9,000 people in the UK have Cystic Fibrosis. If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis. Over two million people in the UK carry the faulty gene that causes Cystic Fibrosis – around 1 in 25 of the population. Over 95% of the UK CF population is Caucasian, but CF affects many ethnic groups. Each week, five babies are born with Cystic Fibrosis. Each week, two young lives are lost to Cystic Fibrosis. Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.
This is Jill on a daily basis when she is well enough to be home with her family . . .
This is Jill’s personal account of her story . . .
I’m 24 years old living with end stage of cystic fibrosis. Currently I’m on the transplant list in the mater hospital in Dublin awaiting a double lung transplant, I’ve been on the list and waiting since June 2012. Unfortunately my illness has taken a nosedive and currently my lung function is at 28% and I am on 6 litres of oxygen 24/7 and use a bi-pap machine (non-invasive ventilator) to sleep at night. This gives the lungs an body a rest and let the machine do a lot of the breathing.
A bi-pap machine (non-invasive ventilator)
Due to being so I rely on using a wheelchair a lot of the time. I require intravenous antibiotics for 2-3 weeks at a time and only get a 1 week break in between as my lungs are so badly scarred/diseased which also brings lack of appetite, nausea, vomiting and spiking temperatures around the clock!
To be able 2 have a transplant would be completely life changing and a second chance at life I’d able to climb the stairs, shower and brush my teeth without getting out of breath, the little things people take for granted and more importantly I’d love to get back to my job as a make up artist for mac cosmetics the girls are awaiting my arrival haha. More importantly I would love to fill a life long ambition of being able to run as well as return to horse riding, a sport I was once able to do. Not only has CF (cystic fibrosis) robbed me of my job and sports, but most of all it has robbed me of my independence as I rely on others for a lot!
My daily routine consists of . . .
- Over 30 pills a day
- 9 nebulisers per day
- Airway clearance twice a day
- Being on a high protein/high calorific diet to maintain a healthy BMI of over 18.5 for the transplant list.
There’s a certain criteria you have to meet to get on the list and stay on it!
Jill’s story just shows how life changing a transplant would be and the importance of organ donors! The NHS Organ Donation website explains how transplants are the best possible treatment for most people with organ failure. Kidney transplants are the most commonly performed. Transplants of the heart, liver and lungs are also regularly carried out. As medicine advances, other vital organs including the pancreas and small bowel are also being used in transplants. Tissue such as corneas, heart valves, skin and bone can also be donated. The increasing effectiveness of transplantation means that many more patients can be considered for treatment in this way. But there is a serious shortage of donors. For some people this means waiting, sometime for years, and undergoing difficult and stressful treatment. For all too many it means they will die before a suitable organ becomes available.
IT’LL NOT HAPPEN TO ME
Just because you don’t have an illness like cystic fibrosis for example that affects your organs and may result in you needing a transplant to save your life, doesn’t not mean you will never be affected by organ donation. You may be in an accident, such as a car crash, which in a click of your fingers may result in you needing the help of a stranger to save your life. Perhaps those around you, like family, friends or in fact your child may also need an organ to survive one day!
According to the NHS Organ Donation website http://www.organdonation.nhs.uk/ In the UK between 1 April 2011 and 31 March 2012:
- 3,960 organ transplants were carried out, thanks to the generosity of 2,143 donors.
- 1,107 lives were saved in the UK through a heart, lung, liver or combined heart/lungs, liver/kidney or liver/pancreas transplant.
- 2,846 patients’ lives were dramatically improved by a kidney or pancreas transplant, 173 of whom received a combined kidney/pancreas transplant.
- A further 3,521 people had their sight restored through a cornea transplant.
- A record number of 674 kidney transplants from donors after circulatory death took place and accounted for one in four of all kidney transplants.
- 1,009 living donor kidney transplants were carried out accounting for more than a third of all kidney transplants. ‘Non-directed’ living donor transplants (also known as altruistic donor transplants) and paired and pooled donations contributed more than 80 kidney transplants between them.
- Almost 942,000 more people pledged to help others after their death by registering their wishes on the NHS Organ Donor Register, bringing the total to 18,693,549 (March 2012).
Here are the top ten most frequency asked questions potential organ donors may have . . .
For more Q&A click http://www.organdonation.nhs.uk/how_to_become_a_donor/questions/
SUCCESS RATES OF ORGAN DONATION IN THE UK (http://www.organdonation.nhs.uk/about_transplants/success_rates/)
Transplants are now so successful in the UK that a year after surgery:
- 94% of kidneys in living donor transplants are still functioning well
- 88% of kidneys from people who have died are still functioning well
- 86% of liver transplants are still functioning well
- 84% of heart transplants are still functioning well
- For lung transplants the figure is 77% while 73% of heart/lung transplants are still functioning well.
For stories of people who have benefited and are here today thanks to the selfless gift of life from their organ donor, the stories of organ donors (by their families) or those waiting on the transplant list click this link . . .
I myself am an organ donor and I’m 100% proud of it! I have a clear conscience that if I ever need an organ myself, that I would be willing to return the favour. To think that I could possibly save at least one person’s life and give a family back their child, mother, father, friend, etc means the world to me and that my death would not be in vain.
To join the organ donation register . . .
The need for organs is constant. Currently in the UK:
- More than 10,000 people need an organ transplant
- Of these, 1000 people – 3 a day – will die before an organ becomes available
More than 18 million people have joined the NHS Organ Donor Register, but we know that many more haven’t yet got around to signing up. While 90% of people in the UK say they support organ donation, to date 30% have joined the the NHS Organ Donor Register. Please show your support for organ donation by joining the NHS Organ Donor Register and let those closest to you know your wishes about organ donation.
TO BECOME AN ORGAN DONOR IN THE SOUTH/IRELAND
- Email – firstname.lastname@example.org
- Free text the word ‘Donor’ to 50050
- lo-call Donor House at 1890 543 639
Irish Donor Network
Also there’s an app available for free called eDonor card
LINKS TO SHOW SUPPORT AND STAY UP TO DATE
Facebook – https://www.facebook.com/organdonationuk
Twitter – https://twitter.com/NHSBT
NEW LEGISLATION ON ORGAN DONATION
There is a lot of talk at the minute about an OPT-OUT system, this is something I most definitely agree with and look forward to being put in place! For more information click http://www.organdonation.nhs.uk/newsroom/statements_and_stances/statements/opt_in_or_out.asp
If you are already and organ donor, or become one after reading this blog please send me a picture of you holding your donor card, like the one above I added of myself. You can do this through email – email@example.com or by uploading your picture to my blog’s Facebook page https://www.facebook.com/pages/Mylifemyblogzane/330730423700309 I look forward to seeing your pictures and showing Jill everyone’s support!
Let me leave you with this thought, if ever the awful situation may arise that you or a member of your family needed an organ to survive would you take it?