Another day gone by. Determined to do more, but keep putting things off. Gets frustrating as I know my time here is limited. There will be lots of regrets eventually.

Trying to push things forward, have great hope for the Exeter Respiratory Innovation centre http://eri.org.uk. #eri. It will however require a lot of work. We need a pathway for new projects, and a continuing conversation with all respiratory departments in the regional hospitals.

The web-site is available, just needs maintaining with new information as it comes in.

There needs to be a small group to verify and validate projects before they get added to the web-site.

Testing emergency services - they work well

Haven‘t been feeling well for a week or so, total loss of appetite, pains all over, and sharp pains in my head.

On the Thursday started feeling better and was able to eat again.

I was doing the LFT Covid tests and they were all negative.

Saturday morning I was sat in the kitchen having some breakfast when I suddenly felt a bit giddy. Next thing I knew I was lying on the floor and someone was talking to me on my watch.

It took a little while to realise what had happened. The ‚Fall Alert‘ on my watch had automatically dialled 999, and also sent text messages to my emergency contacts. The 999 responder was trying to find out what had happened - had already called an ambulance, but said that if I had a way to get myself to the hospital I shouldn‘t wait.

My son and daughter arrived within a few minutes - they both live fairly close, and my daughter drove me to A&E. She was mainly concerned about a lump on my head where I had hit the floor, otherwise I seemed to be OK. At A&E I was triaged within a few minutes and they started on blood tests, ECG‘s and a lot of other tests quite quickly. Even had a CTScan of the head.

All in all I was in hospital for about 5 hours. Nothing found that would explain anything. I surmise that my blood sugar was very low which caused the collapse. 

My consultant thinks that was also probably the case.

My appetite isn‘t good but is getting better with the help of some high protein drinks and soups.

Getting some pain relief

 At last I‘m getting some pain relief for my back. Taking Codeine - just 15mg a day at the moment, and it does seem to be relieving things. 

Had a great meeting yesterday with Daisy Campen and Gina Awad about getting some University student support for the work she is doing - with the Cosy Routes and anything else.

On Saturday went over to Laura Wall in Teignmouth where I was able to buy one of her prints and several bottles of Christmas gin - for presents I might add. Had lunch at The View. 

I‘ve had a lot more energy in the last days. Getting little things done.

Just had an invite for another Arena Session with Chris Scotton, Sarah Lines and Prof. Gibbons. I hope it brings some benefit - won‘t be until February or March. I think I‘ll have to practice what I‘m going to say.

Going to the burial of Meg Leng on Friday. It‘s at a natural burial ground near Totnes. Not a church or religious ceremony. Will be an interesting experience I think. I wonder whether I‘ll be ok there. Sounds like it might be a lot of standing.

Have a session with physio-therapy next week.

Extending the concept of the MDT into the day to day management of complex medical care.

Currently there seems to be a division between the role of the GP and the role of the specialist consultant.

Where a patient has an ILD condition, eg IPF, this may lead to a heart condition or, depending on the medications involved, possibly a liver or kidney condition. Each of these will be managed by different consultants, and so far as I can see, there is not always a huge amount of communication between the disciplines. It is also, more significantly, not clear which of these consultants should be the ‘lead’ contact point for the patient when faced with a change in symptoms, or a deterioration in condition.

Logically you would think it should be the GP who is managing the interactions and who should be the primary contact point for the patient.

This is turn raises the question of whether, for complex cases, there should be a single doctor or senior nurse, who effectively is a ‘named’ contact for the patient.

Looking for ways to improve access to research studies in ILD

 Wanting to set up a network of clinicians to promote offering ILD and other respiratory patients the ability to register for research studies. These may emanate from any of the hospitals in the southwest, but may also be from around the UK, or international clinical trials.

It is.necessary to involve clinicians as their local hospitals may need to be involved in actually qualifying the patient for the study and often in collecting data and monitoring the patient.

2021 Getting worse

 Ah well, 2021 hasn’t really got off to the best of starts. COVID infections and death figures running away. Very serious situation.

Me, I’m ok. Not sure if I should have a vaccination as I have chronic kidney disease and apparently there might be a risk. The vaccines haven’t been tested on people with CKD. 

The children aren’t going to visit until I’ve had a vaccination.

I’m busy with the charity, but also with my role on the PPI group at the Nursing Academy and the medical school at Exeter university. There is a lot of involvement.

Goodness knows what’s going to happen in the USA - all very fraught at the moment. Trump seems to be obsessed with an idea that he’s been cheated out of his second term. All down to the fact that his election rallies were well attended, whilst Biden’s were sparsely attended - but he’s forgotten that this was because of the pandemic. He was encouraging people to ignore the danger as it was fake news. 

Brexit has happened, but because of the lockdown, there hasn’t been any great effect as yet. Time will tell.

DCW is still operational, but a lot of the customers are closed. Luckily there haven’t been any infections amongst the staff. Lucerne, where Alice works, has been hit hard, 60 staff and patients tested positive. 

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. 

Time moves on

There is a new report that shows that if you have IPF and catch the COVID-19 virus you only have a 50-50 chance of surviving, worse if your FVC is less than 80% or if you’re obese.

Sobering thought.

What is annoying is that there are people who strongly believe that there is no virus and it is all a scam to convince people to have a vaccination, have a ‘controller’ implanted, and your mind and beliefs will be controlled from then on. Such utter rubbish, but people are spreading these theories.

It is extremely worrying that there are people like this around and frustrating that there is no point in arguing with them.

I’m still isolating. Reading a lot now. Managing pretty well.

Trying to work out how we can reach more patients with IPF to give them support - if they need it.

Published in the Lancet

In November last year I was asked if I could write an article for the Lancet about my experiences as a patient with IPF.

It went through a couple of iterations, but this week it was published, and I've had some very positive feedback from it.

https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(20)30067-9/fulltext#.XkjnsBZUqO8.twitter

I hope it brings some inspiration and help to some other patients, but also helps the medical professionals understand the patient side of things a little better.

I'm feeling a lot better now - but I still have an occasional cough, and at night I feel I'm not getting enough air, so am constantly using the CPAP machine, which helps me get off to sleep.

Yesterday I had my dental check up. Everything fine, so no work needed at all, but I need to floss my teeth more.

The storms have quietened down, actually quite sunny at the moment, but there is a lot of water around. If it rains again there will be instant flooding.

I've had some issues with the lights at home, constantly blowing the fuse. It's been sorted now thank goodness. All the visible connections have been changed, so now I need a load of new lampshades - currently have Russian lampshades in all the rooms.

Possibly overdoing it..

Choral Diversity, a choir in the Hereford area which rehearses at Leominster Golf Club had a concert in Hereford, and raised £5745 for Action for Pulmonary Fibrosis.

I had the pleasure and honour to meet them to pick up the cheque. It was a long drive but well worth it.

Listened to part of their choir practice.

My granddaughter Molly is home from University ill. Fever and cough. Quite poorly.

Yesterday, before I drove up to Hereford, I waited in for my Oxygen equipment to be serviced. Today, I waited in for my Pirfenidone delivery. I was glad of the chance to sit and doze for a few hours, although I could have done with staying in bed.

I really must slow down.

I feel a lot better, but when I start coughing I get sick, and giddy. Really not good when I'm driving. It's a really weird feeling, feels like my vision does a 'freeze frame', and I sort of lose consciousness. I always stop when I feel this coming on.

There's a paper with my name on being submitted for publication in the Lancet. That'll make two in the Lancet - Yay. All about how short Telomeres can be a cause of PF - which could lead to a test at an early stage, before symptoms become apparent.

Added to this there is a second study just published which indicates that first degree relatives of IPF patients have a 30% chance of getting IPF themselves - and if this could be detected through the test for short Telomeres - could be a game changer.

Looking forward now to another weekend chilling out, doing nothing.