Save the Date!

We are delighted to be once again this year offering two Patient Information Days and six Let’s Talk sessions on a variety of topics relevant to patients and the wider lung fibrosis community. A calendar of events will soon be posted with more details, but in the meantime, save the date for our next upcoming events!

Let’s Talk Oxygen with Air Liquide and Vivisol (online): 27th March at 3:00 pm.

Patient Information Day (online): 30th April at 11:00 am.

To register your interest for these events, email info@ilfa.ie

First Things First 

Born in 1958 in Berlin Germany, my life had many turns and unusual new starts. My first, and still most loved, job is as a social worker – and not just any social worker, but one working with “juvenile serial offenders”. Don’t ask me what drew me to that work and why they, kind of, accepted me. I guess it was my way of being blunt and straight forward.  

After 20 years I left this work, studied computer sciences and moved to Ireland in 2007 to work as a Software Engineer. I had 7 challenging and interesting years, but the social worker in me was still alive, and I started working with charity organisations in Ecuador, Australia, Kenya and South Africa.  

The IPF Diagnosis 

My medical story starts as – I guess – many stories start. Despite being middle-aged, a bit overfed, and not exactly athletic, you feel quite indestructible. Okay, your doctor might have told you to take better care of yourself, and perhaps given you pills to manage your blood pressure or cholesterol but that’s what doctors do. You live your life thinking that this is the aging process. What could go wrong?  

It’s hard to say when my IPF started because it developed so gradually. Since 2022, my breathlessness has become annoying, and I started thinking that it might not just be caused by being overweight and unfit, but I didn’t call it “illness” at that time.  

In early 2023, I had a chest infection and went to the hospital for the first time, but with antibiotics and steroids, I was back on my feet in no time.  

It took over 6 months to get an appointment for breath tests. It took another 6 months for an appointment with a lung specialist to find out the results of the test. The first diagnosis was COPD. I wasn’t scared by that. Of course, COPD is something serious, but it can let you live for many, many years.  

In April 2024, I went to South Africa for the last time, and things turned really bad. I guess the long flights and climate change did their part, and my lungs reacted to it quite heavily. At the end of my five-week stay, I couldn’t make it upstairs or walk more than a couple of minutes without severe breathlessness.  

Being back home, I went to my GP, and he sent me to hospital immediately and I spent 2 days in the ER. After several tests, they told me that my fibrosis was progressing due to another chest infection. The strange part was that I didn’t even know what a fibrosis is, nor that I had one.  

Managing IPF 

Besides more antibiotics and steroids, they told me I’d need an oxygen supply at home. Just a bit when moving, nothing when resting, all that might be temporary until the infection has healed. Ok, I didn’t like the machine, the cylinders and especially not the cannula in my nose, but long term it didn’t sound too bad to me.  

4 weeks later, I had another appointment with the lung specialist and was told that the fibrosis was a severe illness, but there was medication that could potentially slow down the disease. I was informed about possible side effects, but I gave it a try. Within a week, I started feeling really bad, my body wasn’t tolerating the medication. It also turned out that I needed Oxygen 24/7 and at a higher rate than in the beginning. After stopping the medication I felt much better, and I thought everything would be just fine as long as I carried an oxygen supply with me.  

Then August came, and, to make things worse, I travelled to Spain. 34 degrees and me trying to walk through lovely Spanish towns turned out to be impossible. The idea of an electric wheelchair was born.

This was a huge step. In the beginning, I thought that it was the end, but after my first trip, I loved the new freedom. Of course, I encountered obstacles I hadn’t recognised before but found a way around them or just asked other people for help. The great thing is, nearly no one dares to be rude to someone in a wheelchair.  

Advice 

Looking back at the last 10 months when it started going downhill pretty fast, there are a lot of things I could complain about, but for me, there are two things I’d rather highlight instead:  

• I’m not blaming anyone for late diagnosis! It’s a tricky disease, and, most importantly, an early diagnosis wouldn‘t have changed the result because there is no cure anyway. And the doctors can’t do much as long as YOU are unwilling to accept the facts. They just try to be nice and helpful, dealing with the bad news is your part!  

• I want to say a big THANK YOU to all the doctors and nurses, everyone has been very patient and took a lot of time talking to me – and that’s worth much more than pills and syringes. Especially since I’m in palliative care, I have the feeling that there are people who know me and really care about me – it’s not the end, it’s the beginning of the last journey.  

My final message would be that the main work after a diagnosis like this is on yourself. You will have to learn how to cope with many things, physically and mentally. Don’t just sit down and complain or moan or do nothing but hope that something won’t happen. Accept it and get the most out of what’s left!  

I decided to live ANYWAY. 

And one very last piece of advice: Don’t be too mad with your family and friends if they don’t act and react as you were hoping for. They are as overwhelmed as you and have no experience handling something like that. 

The Irish Lung Fibrosis Association was delighted to partner with the Irish Thoracic Society (ITS) for the ITS Interstitial Lung Disease Study Day for healthcare professionals which took place 7th February. Professor Simon Walsh delivered the Fergus Goodbody Memorial Lecture. In addition, the Terence Moran Memorial Award, presented to a Specialist Registrar in Respiratory Medicine for the best multi-disciplinary team clinical case presentation, was awarded to Dr. Niamh Logan.

Congratulations to Dr Niamh Logan and to all of the four finalists who did an amazing job with their cases. ILFA is proud to support this important educational event for respiratory healthcare professionals.

Read the latest in ILFA news here!

ILFA’s offices will be closed from 24th December, reopening 2nd January 2025.

To everyone who has supported our work in 2024, thank you! We look forward to seeing you in January!

Would you like to work out with ILFA? Thanks to an HSE National Lottery Funding grant now you can with our new Strength and Conditioning video! This video is led by expert respiratory physiotherapists Patricia Costello and Grainne Murphy of the Mater Hospital and features our exercise models, David Moran, Ann Markey, and Aidan Lawlor. There are three levels of conditioning to suit every body, and opening and closing mindful moments to help you focus on your breath throughout.

Please note: ILFA strongly recommends that you consult with your healthcare team before beginning any exercise program. Before engaging in the exercises reflect on your current level of physical health and whether you are able to participate. If the activity seems too rigorous for you, please take a break or discontinue the practice. You are encouraged to move at a pace that feels comfortable for you at all times. If you feel unwell before, during or after this practice, you may wish to consult your healthcare team.

Also Note: When participating in any exercise or physical activity program there is a possibility of physical injury. Choosing to engage in the exercises provided in this video is done so entirely at your own risk.

ILFA’s most recent Patient Information Day video provides a variety of information regarding lung fibrosis that will be of interest to patients and their caregivers.

It includes:

• Colin Edwards – Research Update
• Eimear Bell – Exercise and Breath
• Maureen O’Donnell – Advocacy Update
• Grace O’Sullivan – Palliative Care Myths and Truths
• Sean Connolly – GORD/Reflux
• Frank O’Connor – Patient Story (Frank’s book is for sale here: https://www.orpenpress.com/books/dying-for-a-breath/)

Please note: While most of the session was recorded, the overview of lung fibrosis presented by Dr Andre Pozza of Cork University Hospital was not recorded. For an overview of lung fibrosis, you might wish to watch Killian Hurley’s presentation at ILFA’s patient information day November 2023 https://youtu.be/szT_dESoRC4?si=D9ExwM-s_goisFL7 It begins just after the 2 minute mark.

The Irish Lung Fibrosis Association (ILFA) are holding a hybrid World Café-style workshop with patients, carers, family members, healthcare professionals and industry representatives on Saturday 18^th January in Dublin. The event will start in the late morning and last approximately 3 hours.

Our World Café workshop will create a space for participants to share ideas on how ILFA’s four strategic themes (Education, Supports, Advocacy and Research) can best address the needs and priorities of the lung fibrosis community. The information gathered will guide our work over the next few years of our 2022-2027 strategy. As a patient-centred organisation, your voice is critical and we promise a fun and engaging experience where you’ll have a chance to make your voice heard and connect with others in our community.

If you would like to take part in the ILFA World Café, please register your expression of interest by emailing info@ilfa.ie or calling 086 871 5264. Note that after receiving feedback from those interested in attending with a strong preference for virtual we have decided to move the event online.

November 27th 2024

Air Liquide Healthcare – Home Oxygen supply
Communication to ILFA

By way of update to the Irish Lung Fibrosis Association:

Air Liquide is committed to continuously providing a high standard of service to the community and in particular to patients using home oxygen therapy.

Air Liquide has recently purchased large quantities of additional cylinders to cover the increasing demand for gaseous oxygen. The current coverage of Air Liquide for refills is across all geographies in the Republic of Ireland. We understand that the use of oxygen can be seasonal with peaks of demand occurring around holidays, Christmas and long weekends. We work hard to plan for these times and will always do our utmost to ensure you have what you need to enjoy these times.

As part of the new HSE home oxygen contract, Air Liquide is in the process of:
● Installing existing oxygen users currently being serviced by BOC patients in CHOs 1,2,3,7,8,9
● Deinstalling oxygen users in CHOs 4,5,6, who will be looked after by Vivisol as per the new contract

This process is dictated by the HSE where individual prescriptions are sent to either us or Vivisol by prescribers. We estimate that this transition process is approximately 50% complete.

Air Liquide is committed to delivering a high level of service and will work along with the HSE and ILFA to make sure that the utmost attention is given to each patient. In the event our service is not meeting the expected requirements, we would like to remind you that any complaints or concerns can be reported on our website in the contact section: https://ie.healthcare.airliquide.com/contact-us.

As a reminder:
● Refill orders should be requested with a notice of 3 working days for delivery.
● Patients should not use cylinders outside of an ambulatory set up, unless specifically prescribed, i.e. concentrators should be used when inside the house and cylinders when outside of the house.
● Oxygen must not be used in the vicinity of a heat source (gas cooker, gas oven, fireplace, candles).
● For any question, doubt or concern regarding safety with oxygen, contact us.

Please rest assured that if there is any concern we remain available to answer any of your queries at:1800 24 02 02.

Kind regards,

The management team
Air Liquide Healthcare Ireland