Andy Kupfer’s Story 

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.