Having discovered on the telephone, by accident, that I had contracted Idiopathic Pulmonary Fibrosis (IPF) I was faced with a three week delay to see the Lung Consultant (B) for the official diagnosis. In the meantime, and unbeknown to the Lung Consultant (B), I had engaged the services of a specialist and very experienced Naturopath. I was put on a rigorous diet and a programme of natural supplements and I commenced the treatment as soon as the supplements arrived. In Part IV of this story I'll take you through the meeting with Lung Consultant (B). From a timeline perspective all these events from Part III to date occurred within one month, April 2021. 

Without wishing to be unkind, I could have conducted the interview of me, myself. Meaning, I could have written the script! I make no judgement of Lung Consultant (B). He was accompanied by two Senior Nurses. I guess that's in case I become unruly and start throwing objects about the room in response to the news he was about to impart. 

Of course, I had done some homework, so I knew exactly what he was intending to say. Nonetheless, he moved very quickly to show me the results of a previous CT scan which I had done in preparation for my appointment and yes, indeed the scan did show signs of scarring on my lungs. It was explained to me that the scarring would deteriorate over time and that it would eventually spread to such an extent that it would impair my breathing. At this time I would have to rely on oxygen tanks and eventually it would prove so bad that nothing could be done. In summary, the Lung Consultant (B) confirmed everything I'd read and that "it is irreversible, incurable and that on average I'd have about 2 years left, although some individuals go on beyond 2 years but rarely more than five years." They have no cure, but they can slow the progress down with one of two medications...Pirfenidone and Nintedanib. I knew nothing of either of these medications and didn't even research them prior to the appointment, other than I got as far as "there is no cure" on the NHS website. But to give readers a flavour of what was in store, should I go this route, I'll relay what was on the NHS website. 

Pirfenidone

Pirfenidone helps to slow the development of scarring in the lungs by reducing the activity of the immune system.

It's normally taken as capsules 3 times a day.

It's recommended if breathing tests have shown your lung capacity is 50 to 80% of what would normally be expected.

If your condition gets worse despite taking pirfenidone and your lung capacity falls by 10% or more within a year, the medicine will usually be stopped.

Side effects of pirfenidone can include:

• feeling sick
• tiredness
• diarrhoea
• indigestion
• a rash caused by exposure to sunlight

For more information, see the National Institute for Health and Care Excellence (NICE) guidelines on pirfenidone for idiopathic pulmonary fibrosis.

Nintedanib

Nintedanib is a newer medicine that can also help slow down scarring of the lungs in some people with IPF.

It's normally taken as capsules twice a day.

Like pirfenidone, it may be used if you have a lung capacity 50 to 80% of what would normally be expected, and should be stopped if your lung capacity falls by 10% or more in a year while taking it.

Side effects of Nintedanib can include:

• diarrhoea
• feeling and being sick
• tummy (abdominal) pain
• loss of appetite and weight loss

For more information, see the NICE guidelines on Nintedanib for idiopathic pulmonary fibrosis.

I was basically told a quick summary ie. one medication gives you 'the runs' (Nintedanib) and the other (Pirfenidone) screws up your skin and you'll have to wear 'factor 50' cream when you go out. 

You'll see that both medications state that "it may be used if you have a lung capacity 50 to 80% of what would normally be expected" - the Lung Consultant (B)'s view was that practically they don't usually prescribe either of the medications if the lung capacity is 75% or over. Mine was 74%. It was borderline, and in fairness to Lung Consultant (B) he stated that he didn't want to stuff drugs in me where they weren't completely necessary and that he proposed that I wait three months, have a further consultation, and then depending upon the results of my next breathing test, we'll decide how far my lung capacity has deteriorated and I can choose whichever of the medications I'd prefer. It was a fair and reasonable approach as far as I was concerned as to be honest, I hate the medical apparatus which they use for the Breathing test and my poor previous performance could be put down to the struggle I have with it. That said, it was music to my ears that I wasn't to start the treatment immediately.

I enquired about the cause of my IPF and they were and still are at a loss. This was my opportunity to raise the subject of my heart medication and the Serious Side Effects (see Part III) of the two pills I had been taking for 2.5 half years and it was quickly dismissed as "No, no, no - that's very rare!" Of course in order for it to be listed as a Serious Side Effect, someone must get it! That 'someone' could be me and so it cannot be discounted. I suggested that perhaps the heart medication wasn't the correct type and again it was discounted although as a rider, Lung Consultant (B) stated "Well, I suppose it won't do any harm to come off them for a few days and see how it goes".

What he should have said, is "I'll contact your cardiologist and speak to him about the medication." He didn't and this gave me an opportunity to at least try an alternative approach. Of course, I'm not completely dumb in that I know that if I have been taking medication daily for two and a half years then merely "coming off for a few days" is going to make sod all difference. I need to be off them for at least 3 or 4 weeks to allow my system to clean through, a bit like detoxing. My appointment over I left with leaflets on the medication in hand and a new appointment to be made three months hence.

Three days later, and in light of the knowledge I had learned from my Naturopath regarding the efficacy (or lack of) of the Bisoprolol and Simvistatin, I stopped my heart medication, including Aspirin. This was 25th April 2021. I already possessed a blood pressure unit which read my heart rate as well as blood pressure, an oxymeter for my oxygen and heart rate and a fit bit for my heart rate and I intended to regularly check my readings, and my cholesterol would be checked by my Naturopath. If you are thinking it was a dumb choice by me, then you need to understand that my Naturopath was aware of my intentions and some of the supplements she prescribed were designed to strengthen my heart, my heart structure and assist with my cholesterol, but besides I was already two weeks in to my Naturopathy programme and the associated rigorous diet. 

I was comfortable with my decision and I started to monitor my readings.

In Part V of the story, I take you through some of the meals I prepared during my rigorous diet and how I started to change my lifestyle. So check back to discover what I was eating, drinking and how it affected my approach to food, and life.