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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

My Transplant

Transplant recipient Robert Cooke shares his experience as an IPF patient and gives thanks for his second chance.

It all began with a tickly cough that wouldn’t go away. After a couple of months, I went to my GP and was referred to a respiratory consultant who carried out tests which seemed to point to asthma. Six months later, I experienced chest pain and tightness across my shoulders when walking, so my GP sent me for a heart stress test and chest x-rays. Pulmonary fibrosis was mentioned for the first time. I was immediately referred to another respiratory physician and diagnosed with Idiopathi Pulmonary Fibrosis. It was a huge shock to learn that it was a progressive illness and the only cure was a lung transplant.

I was immediately prescribed oxygen, initially for 8 hours a day or during physical activity, but then I needed it more and more. Six months later, I was started on Pirfenidone, a drug that can slow down the progress of the disease. After six months, my lung function was still deteriorating, probably less so because of the medication, but I was now using oxygen 24 hours a day and was less able to do things or walk more than a few hundred meters.

On a visit to my consultant in 2016, we asked about the possibility of a lung transplant. He agreed that it was the only hope and admitted me for a week of tests. You can only go on the transplant list if all your other organs are healthy so everything had to be thoroughly checked out. Thankfully, apart from two diseased lungs, I was ok. Next, I was assessed by the transplant team at the Mater Hospital. It was during these meetings with the surgeons, transplant nurses, psychiatrist and social worker that the enormity of what a transplant entails began to sink in. You are given a handbook that explains the procedure, the complications that can occur, the follow-up treatment plan, the life-long drug regime, the changes in lifestyle, and the home support needed – but all so worth it, if it means a second chance at life.

Two weeks later, I was on the transplant list and the waiting game for a suitable lung began. I packed my bag, had my mobile phone with me at all times, and waited and hoped. One of the transplant co-ordinators rang me every Tuesday to see how I was doing. This call was a huge comfort and once they even recognised a flare up in my IPF from how my breathing sounded over the phone and told me to go straight to my GP. 

After 9 weeks on the list, my mobile phone rang. Within an hour I was on my way to the Mater Hospital by ambulance. My wife and son followed by car because if I wasn't a match or I wasn't chosen, they would have to drive me home. We had been warned that this was a very real possibility. I arrived at 11pm and after numerous tests, we were told that my bloods matched and that there was definitely one usable lung and probably a second one but we had an agonising wait because it wasn’t until 1.30pm the next afternoon that I got the go-ahead!

The next thing I remember was waking up in ICU attached to lots of tubes and machines. Over the next four or five days, the number of tubes and attachments was reduced and I managed a wobbly walk around the intensive care unit. Once I was steadier on my feet, I was moved to the Heart and Lung Ward where I continued my road to recovery helped by the fantastic care I got from all the Heart and Lung Team.

I had a slight stroke during my operation and this affected my eye-hand co-ordination and eyesight so I had difficulty sorting out the numerous tablets I had to take twice a day. You can’t go home until you can do this for yourself so this delayed my discharge by a few days. Just three weeks after my transplant, I was allowed home. It was quite nerve-wracking as from now on it was up to us alone to look after this very precious lung.

For the next three months, I couldn’t go into public places without wearing a face mask and had to avoid crowded places. Initially, I had to attend the Mater Hospital clinic every week. The clinic is like a club with people swapping stories and tips but it can be very tiring as some people have to travel long journeys to Dublin for the 3-4 hours it takes to have your bloods taken, pulmonary function tests, and consultations with a transplant nurse and doctor. For the rest of my days, I will have to record my weight, temperature and daily medication in my Transplant Medication Diary so that if a blip occurs, infection can be ruled out as a cause. 

Six months after the transplant, my quality of life has improved so much. I can drive again, do the shopping, visit friends, have a meal out, walk on the beach, and I have lived long enough to see my youngest granddaughter take her first steps and call my name – inconceivable this time last year.

This gift of life selflessly given to me and my family by another family at a time of the most enormous tragedy for them is priceless and I will do my best always to honour and care for that gift. As a family, we cannot thank the donor and their family enough for giving us this second chance. They are in our thoughts and prayers every day. 

 

Robert Cooke

Lung transplant recipient