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.
Tuesday, February 18, 2020
Friday, February 14, 2020
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.
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.
Wednesday, February 12, 2020
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.
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.
Monday, February 3, 2020
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.
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.
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