Weʼre raising £5,000 to "ONLY FOOLS" Helping to raise funds for research into Idiopathic Pulmonary Fibrosis
- Ulceby, United Kingdom
- Health and medical
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I suffer from a condition called Idiopathic Pulmonary Fibrosis. This condition kills very fast. There is no cure. My body was killing me. I have been lucky that I had a lung transplant in March 2014. I still have trouble breathing and with my mobility leading to me having to give up work last year. The only thing that has helped me keep peace of mind is trying to raise awareness of this condition and funds for research to find a cure. I was struck with this devastating illness some 10 years ago. Never letting it take over my life I still trained as a Mental health nurse graduating in 2012 by 2014 I was on the lung transplant list as my oxygen levels were so low. I had managed to keep going up to this point even remaining quite fit. Later I found that was a great help.
IPF is scarring on the Lungs. This prevents the exchange of gasses from the lungs into the bloodstream or from the blood to the lungs. The lungs become stiff. Resulting in lack of Oxygen going to the vital organs around the body..It does not take long before the body decides it wants to close down, Most people die within two and a half years. IPF is a nasty killer. There is nothing a person can do to stop IPF from developing. Its not from smoking or lifestyle choice. It affects the whole family watching a loved one die.
It hits you like a brick in the face. One day you are told you have IPF. The Dr starts by telling you. that you are lucky that its not cancer . Then the hit you with what it is and tell you there is no cure. If you are lucky you will get a transplant. That is not a cure but may, MAY give you a bit longer. However, you swop one set of problems for a whole set of others. Rejection ongoing, Kidney failure, Diabetes. Eye problems. joint pain and the best one breathing difficulties.
At first I felt so well. no symptoms that I could see. They Dr must have got it wrong I felt a sham, Having to tell work I had this condition IPF. I carried on working and studying, First at York college doing up skills and access to nursing. It was a bit of a struggle getting up all those stairs to lessons but the younger folks found it just as difficult getting to the top floors. Passed my exams and got into The University of Hull. Graduated as a nurse in 2012.
I started working as a nurse in October 2012. In October 2013 my condition had crashed I was needing to use Oxygen to get around. Still managing to work but only in an office. December 2013. I had tests done in the Freeman hospital to see if I was a candidate for Transplants. I had been attending the Freeman for some 6 years so by this time they knew me well. I had taken all their advice, Attended pulmonary rehap twice a week. This helped in keeping me kinda fit. After the 4 day tests I was told that if I wanted to go ahead I would be put on the transplant list in the January. I also had to give up work. After the Christmas period I went on prolonged sick leave.
I had my Transplant on the 27th March 2014. The operation lasted four and a half hours. I was told at the time I would be in hospital for between 3-6 months. I was out in 2 1/2 weeks. I returned to work in the July. I felt so good. I could walk without the need of Oxygen tanks. Unfortunately all the medication I take left me open to catching all the bugs going. This meant I would end up having long periods of time off work. I decided to give it one last try and started working as a community nurse, not much changed so in the end due to my physical and Mental wellbeing I felt I could not take any more. After talking to NHS managers I gave up work.
A new way of life started. Alot of it fun, a lot of pain in my joints and around my surgical site, A nerve got hit during the operation. I was cut around the shoulder area. This has not stopped me taking up archery a few months back. I even entered the British transplant games in Glasgow this year. Last march along with a group of friends we raised £3000 for research by riding small motorbikes from Bridlington to Morecambe 171 miles I did it on a 50cc monkey bike. The event was over 2 days. Boy did I suffer with the pain after the event but it was worth it. Memories and fun.
Since then I learned that there was only 33 transplants at the Freeman Hospital in Newcastle last year due to there being less donors. This has led to me wanting to raise more funds for Research and the need for donors. I will be doing John O Groats to Lands End via the Humber Bridge in A Reliant Rialto (Robin). Rodney in Only fools and horses drove over the bridge in the Trotters Independent Trading van. Our car is called Rusty Rita 2. She will be soon carrying graphics for the event. I aim to drive up the East side of the country and down the South. Calling at IPF support groups along the way. Some of my mad friends are going to join me. Making up their own minds how to promote the cause. One friend wants to follow me on a moped. The Event will be called "ONLY FOOLS", We intend to start the drive around the 10th June 2018. Help us in reaching our target to raise awareness of IPF, the need for donor's along with much needed funds for vital research. My life was saved. Transplants are not a given, most people don't make it.
It will be hard for me to do this event. It does however reflect how I see life with IPF or a transplant as a struggle.
All done in memory of a Angel in heaven whom gave me the gift of life.
Please Give if you can. Monies raised will be going to Research at Castle Hill Hospital and the Freeman Heart & Lung Transplant Association, Newcastle
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- 3 months ago
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Leave a message of support
Dec 27, 2017
Good luck and keep up the good work u do to raise awareness for IPF xx
Sep 18, 2017
Hope this helps! :) good luck on your drive! From your neighbours down the road x
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About the fundraiser
Ulceby, United Kingdom
Hi, I am Shaun IPF warrior and transplant patient. I fight every day to live. I want to help find a cure for IPF. Help me raise some funds to fight this Killer. I will be driving Rusty Rita from John O Groats to Lands end. Aided by Friends on Royal Enfields next summer
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