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Stories from January, 2012

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A Tribute to Patrick O’Sullivan

Patrick O’Sullivan was born in the County of Clare in 1947. He had three elder siblings, Betty, Martha and John.

He grew up at the family house in Killaloe, Co Clare, until he was sadly orphaned at 12. He then finished his studies and went to England aged 17.

It was here that he met his future wife, Marianne. Some years later, their first daughter Michelle was born, followed some six years later by the arrival of their second Daughter, Adele.

Family life was very important to Patrick and many summer Sundays were spent in Saltdean in Sussex.

Patrick had many proud days in his life and some of the proudest were the marriage of his daughter Michelle to Malcolm, topped some six years later by the arrival of his only grandchild, Katie, who at 6lb 2oz fitted neatly into Patrick’s hand!

In 2007, Patrick’s brother John sadly died of Pulmonary Fibrosing Alveosis, which at the time we were led to believe was a non-hereditary disease of the lungs. At the beginning of 2010, Patrick was becoming shorter of breath and several tests later he was told he needed a heart operation. Patrick went through this operation in March 2011, but was still short of breath.

In June 2011, a CT scan showed that Patrick had a condition called Idiopathic Pulmonary Fibrosis. We found out that this was formerly known as Pulmonary Fibrosing Alveosis, but as it’s cause is unknown (hence the term ‘idiopathic’) and as the inflammation treatments were not always effective, the inflammation was brought into question and the name was changed to  Idiopathic Pulmonary Fibrosis. Patrick was given 18-36 months to live with this condition.

Patrick tried to research this disease and had made contact with Toby Maher, a Professor at the Royal Brompton Hospital, to look into doing a drugs trial. Patrick believed that this might not necessarily help him, but would help others in the future with this disease. In early December, Patrick went to meet Toby Maher and they discussed doing a drugs trial in January 2012.

Unfortunately, less than one week later, Patrick was taken into hospital with pneumonia. During the three weeks that Patrick spent in hospital, he met many doctors who had really only seemed to come across one other case of this disease and it really highlighted how much research is needed into this.

Sadly, Patrick died on 2nd January 2012.

We decided to set up the Just Giving page to Breathing Matters to ensure that research does carry on for future sufferers of this. We also asked attendees of the funeral not to give flowers, but to make a donation in Patrick’s name, so that the money which would have been spent can go to a good cause.

The family has been amazed by the amount raised in just ten days and have found this and the messages on the page a great strength. 

If you would like to support this great cause, visit our donation page on http://www.justgiving.com/Patrick-OSullivan

New Year’s Resolution: Quit Smoking

It is the New Year, so it’s time for some self-improvement. Have you made New Year’s resolutions before, but failed to keep them? I would argue that a resolution is too restraining and negative, I would prefer to focus on adopting habits that keep you healthy. Let’s concentrate on the smokers amongst you. You know who you are?  Have you tried quitting before or have you persuaded yourself that your genes will protect you from the ravages of cigarettes?

First, think of why you should stop smoking and then, when you have decided to (and this might be the difficult step), take the first teeny weeny step. You do not have to throw all your cigarettes away for good – although that might be one approach. Take a small step, develop a new habit and, once it is taken, you are on the road to being an ‘ex-smoker’.  Keep taking little steps that help you develop little habits and you will achieve your aim.

Take Small Steps

What small steps can you take?  Try these:
1.  Develop a disgust for cigarettes. Spend 5 minutes each day imaging the toxic smoke filling your lungs and turning them black, and large globs of fat being deposited in the blood vessels of your brain, heart and legs. The surgeon teeing you up for an amputation operation, etc. Remind yourself of this every time you smoke.

2.  Toss a coin each day. Heads you smoke that day, tails you don’t.   Or, if that is too difficult, ‘tails’ you don’t smoke until midday or something similar. Keep this going for a year and you may reduce your intake by 50% (provided you don’t smoke twice as many on the smoking days).  On smoke-free days, have a shower, wash your hair, put on clean clothes and enjoy the fresh smell that you exude.

3.  Take fewer draws from each cigarette (you are going to have to be honest here).

4.  As an incentive, you could get yourself sponsored for giving up smoking and help a charity at the same time.

5.  Make the first step to getting expert help.  You can get excellent help from the following:

No matter how small your first step, it is a first step and it will be difficult – if it wasn’t, everyone would do it.  Keep in mind the pluses of being an EX-smoker.  Reward yourself for even a small achievement (not with a cigarette please).

Here are some of the reasons why you should quit (this is taken directly from http://smokefree.nhs.uk/why-quit/health-and-confidence/

Health Benefits

  • You will reduce your risk of developing illness, disability or death caused by cancer, heart or lung disease.
  • You will reduce your risk of gangrene or amputation caused by circulatory problems.
  • You will protect the health of those around you by not exposing them to second-hand smoke.
  • You will reduce the chances of your children suffering from asthma or glue ear.
  • You will improve your fertility levels and your chance of a healthy pregnancy and baby.
  • You will improve your breathing and general fitness.
  • You will enjoy the taste of food more.

Your lifestyle WILL improve (after the short term discomfort)

  • You will save money – as much as several hundred pounds a month, if you’re a heavy smoker.  Perhaps some of this ‘spare’ money could be given to charity!
  • You will no longer smell of stale tobacco.
  • The appearance of your skin and teeth will improve.
  • You will feel more confident in social situations – you won’t be worrying about the second-hand smoke you create anymore.
  • As a non-smoker, you may even find you get approached more often by potential new friends and partners when out socialising.
  • Your home will smell fresh and you will no longer be staining your walls with tar.
  • You will reduce the risk of fire in your home.

Share your own stories with Breathing Matters. We are adding a page to our website to celebrate smokers who have quit.  If you would like to join our gallery of successful quitters in 2013, email us on info@breathingmatters.co.uk with your story and a photo.

GOOD LUCK!

Organ Donation: A True Gift

The gift of an organ to a patient who is in desperate need can be life-saving. A single individual can, after their death, donate their organs to save the lives and sight of up to 7 different people. Many people in the UK are waiting for organs to be donated and, every day, three people (1000 people per year) die waiting. Whilst the majority of people in the UK would accept an organ for themselves or their children to save their lives, only 29% are actually on the organ donor list.

As well as joining the donor list http://www.uktransplant.org.uk/ukt/Consent.do), it is also important to make sure that your immediate family know that you want to be a donor.  This means that, if they are asked about your wishes, they can consent to the use of your organs for donation, quickly and without any guilt, confident that this is what you would have wanted. 

Recently, I asked some of my non-medical friends if they were organ donors and was surprised that that very few of them are. These are some of the reasons that they gave for their decisions and my answers to them.

1.  Haven’t people woken up from severe brain injury years afterwards? I am worried that if I am a donor I will be declared ‘dead’ even though I may still have a chance of recovery.

Organs are only taken from patients that are on life support machines in Intensive Care and are declared ‘brain dead” or from patients who have died but whose organs can be removed very quickly (within minutes) after their death (realistically this is only possible if patients die in hospital, usually on an intensive care unit). It is true that some patients with severe brain injury may recover up to years later, but these patients are not ‘brain dead’, they may have wide spread brain injury or be in a ‘persistent vegetative state’, but organs would not be taken from these patients as they are not dead.   Brain death is a definite diagnosis that requires a complex series of tests 24 hours apart supervised by at least two experienced, senior and independent doctors registered with the UK General Medical Council. These tests show that there is no viable brain function, the brain will not recover and the lungs and heart can not function at all without life support machines in the Intensive Care Unit.

2.  My sister had a terminal disease and was allowed to die at home, her body stayed with us for a couple of days. If she had been an organ donor, this would not have been possible.

In fact, the only people that can donate organs at the moment are those that are on life support machines on the Intensive care unit who are then shown to be ‘brain dead’ or those that die in hospital whose organs can be removed safely within minutes of their deaths.  Patients with terminal disease are not suitable as organ donors for many other reasons so this would not have interfered with a conscious patient’s last days with her family.

3.  I am worried that, if the doctors know that I am an organ donor, they will not try to keep me alive.
Every doctors’ primary responsibility is to their patients. No doctor would risk your life in the chance that you might save someone else by organ donation. The only way that you can become an organ donor is if you are declared ‘brain-dead’ by two independent doctors using specific tests, or in rare cases if you have already died and your own blood circulation has stopped, but your organs can be taken from your body very quickly, within minutes and kept cool on ice. The UK Donor Ethics Committee meets several times a year to consider ethical issues related to organ donation; they are very conscious that nothing should be done to a patient that is not in their best interests, particularly if they are on the organ donor register.

4. I am too old to be a donor, no-one would want my organs?
There is no upper or lower age limit for joining the register.  Even if you are well into your 60s, some of your organs may be useful to someone. Some individuals may be chronologically old, but with hearts as good as a much younger person. It is best to be on the register and let the doctors decide if they want your organs or not than to use this as an excuse!!

So, join the NHS Organ Donor Register today.  It only takes a few minutes to do this online at http://www.uktransplant.org.uk/ukt/Consent.do). 

It could be the best gift you ever give.