News and Upcoming Events 

 

 

Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA branch where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or by calling 086 871 5264

Enjoy Life!


Patient, advocate and fundraiser Pam Martin shares some tips on coping with an IPF diagnosis, staying positive and enjoying life to the max.

 

I would personally like to thank ILFA, for the work they do for patients and families who have been hit with a diagnosis of lung fibrosis. It's a blow when you have been given the news that you have a serious lung condition, but ILFA has been with me every step of the way with help, support, and a great support group that provides a wealth of information shared by patients and carers alike. So for this, I thank all those involved with this wonderful organisation.

I would like to share with you some information about myself as a patient living with Idiopathic Pulmonary Fibrosis (IPF). I was diagnosed in December 2009. I considered myself quite fit and was easily able to swim 100 lengths of a standard pool, in one hour. After, I changed gym to a 33 meter pool, I was swimming at least 50 lengths but within 3 months my breathing was not quite right. I also developed a cough and made the excuse that it was probably due to the new swimming pool and maybe the chlorine. When I went on holiday to the Canaries, I could not walk without stopping and coughing, and again I came up with another excuse to explain my symptoms.

I worked in a medical centre and the GP was concerned about me. After 3 lots of antibiotics, I was getting worse and the GP referred me to the Accident and Emergency Department. I was admitted to hospital for 7 weeks and a biopsy confirmed IPF. So within 3 months of being fit to being told that I may need a lung transplant at 51 years of age, having never smoked, was a hell of a shock to me, my family and friends. After a battle with getting the correct medication and pure determination on my part, I started feeling better. I joined a Pulmonary Rehabilitation class which I would recommend to all patients, I know it's hard and sometimes you can't breathe but please fight it as you will feel the benefit.

What I really need to get across is that it's not the end - you can still enjoy life, I still have my foreign holidays, I need oxygen on the plane but airlines are pretty good and take good care of you. I use my portable Inogen machine and there are other options available, so please ask your supplier - they will be happy to help you. Aer Lingus and Ryanair allow you to travel with oxygen equipment, just look up the special assistance departments when booking. Both airlines have a form that has to be signed by your GP - usually within two weeks of your travel date. Even cruise ships allow the equipment and your oxygen provider will supply you with a list of companies that will provide you with your specific needs. I cruised from Spain and the oxygen was in my cabin on arrival. You will need to state this when booking, but really it's quite easy so don't be afraid to ask.

Don't be embarrassed about using oxygen, and don't confine yourself to home - get out and enjoy life! Just give yourself that little push to get up and get out. Explain to people that you can't tolerate smoke or heavy perfumes (be honest!), or whatever it is that sets off your cough.

I would like send thanks to all the fundraisers who help ILFA with much needed funds to enable them continue the good work they do. To Irishkop and YNWA Irish Reds, and Rafa Benitez, for supporting me and ILFA through fundraising - a big 'THANK YOU!'

Thank you to the ILFA committee and the people who attend the support group - we have had laughs and tears and you all hold a very special place in my heart!

Best wishes,

Pam Martin

IPF patient, patient advocate and fundraiser

 

[Pictured are Pamela Martin, Rafa Benitz, Eddie Cassidy, Stephen Cassidy]