Time flying... but still shielding

 First of the month, the last month of the year. Did an interview for BBC Spotlight last week, but still waiting for it to be broadcast. It’s about the result of some research at the UNI medical school, led by Anna Duckworth but fronted by Chris Scotton. Chris and I did the interview - me, giving the view of the patient. 

I’m now on the PPI of the Exeter nursing academy, not sure of what the commitment will be, or what it will involve, but it seems quite full on. 

Debenhams looks like it’s going to cease trading which is a shame. Arcadia (Top Shop, Burtons, Dorothy Perkins etc..) has also gone broke... basically the result of financiers trying to run companies, investing in the assets rather than the real trading value of the business.

Didn’t invest in the online world.. where you require a new way of thinking. A lot of people require help and advice when buying clothes, and so small shops with example styles and materials on display, and expert measuring service and then able to order with very short delivery times - and then fine tailoring to make final alterations - all done within a short space of time.

Prices will go up probably, and the nature of the high street will probably change, but the change may not be that dramatic. More technology will be needed, more socialising, fashion displays whilst having a coffee.

Back to IPF and COVID. Increasing evidence that COVID can lead to fibrosis of the lung. Bad news for many people, and increasing pressure on respiratory services in hospitals. 

I‘ll be on my own for Christmas. I‘m quite happy with my own company, and not a ‚social‘ person really - don‘t like party games and such things. There is a lot of COVID about in my social circle - so best to hunker down.

Now a bit later, the BBC interview hasn‘t been broadcast... surpassed by all the breaking news on Cornwall being in tier 1 and Devon in tier 2, a COVID vaccine, and the fisheries causing a no deal Brexit. All still ongoing.

Yes, we have a vaccine, how soon I‘ll get it is anybody‘s guess. I am highly vulnerable, so should be one of the early ones.

Will let you know.

Still shielding

 There is so much unknown about Pulmonary Fibrosis, and a general lack of knowledge about the nature of the disease and how it relates to other diseases.

In medicine not everyone reacts to a disease in the same way. Not everyone gets the same symptoms, and a treatment which helps one person doesn’t necessarily help everyone else.

Currently there are no treatments which stop fibrosis or reverse fibrosis. 

With pulmonary fibrosis, whilst the fibrosis can appear to reduce the volume of the lungs, it doesn’t always do so significantly, and can also sometimes only reduce the volume in the very last stages of the illness. Fibrosis makes the wall of the lungs - the interstitium - less flexible and thicker, thus making it harder to breathe, and making the person more breathless when exerting themselves. 

From observation it would seem that getting the right nutrition is extremely important. Rapid weight loss is not good and can result in a very poor prognosis. I have known several people on Nintedanib who have suffered with stomach upsets, including severe diarrhoea, and not lasted long, I suspect because they have persevered with the medication for too long and their organs have suffered as a result.

I believe that when a patient is being seen by a specialist centre, then that specialist centre should look after the whole health of the patient. Currently there is a game of symptom ‘ping-pong’ with some aspects of a patients health being looked after by a GP, and the fibrosis being monitored by a specialist. The problem being that the GP, who will be asked to advise on nutrition, blood pressure, weight management, cough and other things generally has little or no knowledge of PF and its treatment.

The patient is left with a dilemma in that he doesn’t really know who he should approach when symptoms worsen suddenly. 

Hopefully now getting better

At the Arena Session at the Medical school, one of the students asked the question - why do I keep going, why don't I just give up.

The context being that this IPF is incurable and there is no sign of a cure, and as any new drug needs several years of tests, trials, and decision making before it can be used - what hope is there for me, as I've already been diagnosed for over 5 years and the median life expectancy after diagnosis is 3 to 5 years.

 This was further compounded by a conversation I had with the lead researcher at the medical school and my consultant on Tuesday, We were talking about the fact that some therapies give short term benefit - make you feel better and give a better quality of life, but have in fact been shown to actually speed up the progression of the disease.

Most notably steroids in the case of IPF, although they are still widely used long term for PF, but also Pulmonary Rehab, this is one I've been worried about for some time, and also possibly supplementary Oxygen.

My own theory is that using supplementary oxygen encourages people to do more physical exercise than they should and consequently overstretches the lungs, causing more scarring - in the same way that pulmonary rehab does.

Back to the original question - why don't I just give up? I guess it's just in my nature to just keep going, it's possibly being in a perpetual state of denial. It's easier to sit in my office behind a desk keeping myself occupied, than sit and home worrying, and you never know, I may help someone find the elusive cure.

I admit though, I do learn a lot about the disease every time I meet with others who have knowledge of the disease.

Diagnosed in 2014

I'm Howard, and been living with IPF for the last 5 years.

I've covered a little bit of my journey in another blog - caring at home, but thought I'd start s dedicated blog just for my IPF.

I've been on Pirfenidone for about 4 years now, and it seems to have been working - after all I'm still here, although perhaps not quite as well as I was 4 years ago.

I'm 75 years old - for the last 5 days anyway.

I go into my son's office every day, where I help out with a few things, give sage advice and causing trouble. It's a waste management and recycling company operating in the far south west of England. Head office in Exeter but with premises in Plymouth and a site in Cornwall.

I am also a trustee of the charity Action for Pulmonary Fibrosis.

I attend a support group for pulmonary fibrosis in Exeter, run a group myself in Plymouth, and am about to start a group in Torbay.

Pulmonary Fibrosis and Idiopathic Pulmonary Fibrosis in particular is an isolating disease. There are some 35000 people with the disease in the UK, but there are some indications that the number may well be considerably higher.

One feature every patient comes across is that at a doctors appointment, or at any medical appointment, if it's with a nurse or doctor they haven't seen before they end up having to explain what Pulmonary Fibrosis is, and how it's different to COPD.

This week I've just been finishing an article for The Lancet. I'll put a link to it when it's published.

I'll try to keep this blog going on a regular basis - so keep an eye out for me.