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.

A lot has happened

 Can‘t believe how long it‘s been, but as only a couple of people see this blog, I guess I‘ve not been missed.

It seems that the one of the tools that academics use to progress in their careers is the amount of grant funding they have received for research projects. When they apply to a post at a university they use their past success in applying to for funding to bolster their chances.

Sadly this results in the researcher often losing interest in the project once the funding has been received - especially those projects which require a lot of actual work to get going. Although all funding grants will require progress reports and reports on completion, it is relatively easy to ‚fudge‘ such reports to give an illusion of progress, or to find excuses for a lack of progress.

This can have a detrimental effect on other people, especially collaborators, who often put a lot of effort into the project, and have high hopes that their work will have long term benefits only to find that the lead investigator has moved on to other things.

There needs to be a way to encourage real progress. To encourage but also monitor benefits. 

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.

Another gap

 A lot has happened - but also not a lot has happened.

Terry Lowther passed away last week. He had Sarcoidosis but not sure of what actually caused his death. He was still a councillor right to the end.

I‘m still struggling on with the illness. I get frustrated, seem very impotent. Want to do a lot more than I‘m actually capable of. I think I‘m not capable but I feel guilty for not trying harder. Spend all my time on my computers procrastinating rather than actually doing stuff.

Sometimes very depressed, but most times very content with my life. 

Recently I keep getting the feeling that I‘m just going to pass away in my sleep. Just not feeling very well sometimes, and get very giddy sometimes.

Hoping to get caught up with outstanding jobs soon. Have been into the office a couple of times, and will be going in again tomorrow late morning, till early evening.

Feeling a lot better

 Been feeling a bit down just lately. The pains in my back have been quite bad, making it difficult to even stand up straight let alone walk anywhere.

A couple of days ago though thought I would try something which someone recommended a long time ago but which I’d never tried - turpentine oil. It was recommended as a cure all for everything including the IPF so I wrote it off originally as just a quack remedy.

I looked it up again and one of the things it is said to do is relieve pain. I ordered it, and yesterday it arrived. Rubbed some on the small of my back, where the pain is seated. I have arthritis in my lower spine.

Just 24 hours later I feel a lot better and although I’m very stiff still, the extreme pain when I walk has eased. 

I have a feeling that if I can ease the pain to be able to move more freely again, the additional movement will itself lessen the pain, and stop it getting worse.

Have to decide now whether I should be getting out to attend meetings again. By the end of June I have two gatherings I should attend - one an ‘away day’ with the staff of the nursing academy, and an informal day in Cambridge with APF.

The weather is a lot better now, but not blazing sunshine. Makes life seem a lot better though.

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.

 Another day in the life of an IPF Patient.

Trump no longer in the White House. Not sure though that Biden is any better for the world. 

Here, our government seems to have rolled out a good vaccine programme but I think it’s more by luck than judgement. 

I seem to be pretty much the same as before, but I am noticeably weaker. The pain in my back is bad if I attempt any form of walking. The FVC readings seem to be pretty stable. I’m doing home spirometry and sending figures in once a month.

The support groups seem to be progressing OK, and I’m involved in more and more things at the University.

I’m involved in the PPI group at the Academy of Nursing, Through that am on the PIME group at the Medical School. 

Separately I’m in EPIC which is the PPI group for the respiratory research at the University.

Also involved with Plymouth University through WellConnectedUK a charity group with an office in Plymouth.

Not sure if I’m influencing too much, but they keep asking me now to join things, and for my opinion on things.

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.

Moving on

20th April. Lockdown extended for another 3 weeks, and I would guess that I’m not going to be going out for the rest of the year. If there is a vaccination which is effective it could be earlier - but these take at least 18 months.

My little WhatsApp support group is about 17 members now, from Poole to Falmouth. Messages every day.

I’m just about coping with things, but it’s getting harder constantly worrying about whether I’ve got symptoms. My friends little boy Karies has had a temperature for 2 or 3 days now. Not excessively high, but worrying all the same.

Saving money, the wildlife are exploring new places which are now suddenly quiet.

COVID-19

Sudden unexpected change of lifestyle. Have been in isolation for five weeks now. Have now been getting groceries delivered to home. Medicines too. Don’t see anyone.

The country, like half the world is in lockdown as a result of the spread of a virus which originated in China, back in January. The Corona virus or CoVid-19.

Currently over 100,000 deaths. Over 10000 in the UK. The US has over 500,000 people infected.

Neighbours are spying on each other and informing the police when they think they are breaking the social distancing rules. Anyone who criticises the government is vilified, even though their reaction to the spread of the virus, and their initial strategy for controlling it were badly flawed - basically allowing the virus to spread unchecked, on the basis that the more people that were infected the better - building up a ‘herd immunity’.

There are no easy answers however.

Many conspiracy theories exist.

I’m fine for the minute, but not sure how I will ever be able to mix normally again until such time as a vaccination is found.

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.

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.

Been out of action for a few days

I think it's a chest infection but it could be the IPF getting worse. Have a really bad cough, very chesty and very wheezy and bubbly. On carbocisteine to help loosen up the phlegm, and on anti-biotics - can't remember the name, sorry.

Spent more or less four days in bed or just lying on the sofa. My cat, Oscar, was very happy.

I've come in to the office today, but I guess I should really have stayed at home again. There is just too much to do.

I have a meeting at my bank tomorrow morning, and on Thursday have a meeting of the Friends of Dawlish hospital.

On Friday I'm taking part in an arena session at the Medical School of the University of Exeter - that's where a clinician, a researcher and a patient get together to give a lecture on Interstitial Lung Disease - with particular emphasis on Pulmonary Fibrosis. It's for first year medical science students - basically to encourage them to go into research.

In addition I should be having an article published in The Lancet. Part of a series putting a spotlight on patient experiences.

As I sit here in the office my O2 level is 95% - which isn't bad. My chest feels a bit tight, and there's a tickle indicating a cough might be on it's way. Last week every cough hurt a lot, but now it's a lot looser and less painful.

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.