This section of the website is entitled ‘Your voice‘ as it is for the publishing of your thoughts on anything relating to your experiences and journey with ILD. Feel free to submit your comments, letters or links to published articles by using the Contacts section of the website.
What is it like living with IPF?
Listen to Ron Flewett, trustee of the Pulmonary Fibrosis Trust (PFT) and patient advocate.
Journeys through Pulmonary Fibrosis A podcast series by Boehringer-Ingelhime on Interstitial lung disease (ILD)
Covid-19: … so what next for those who are shielding?
Taken from a discussion at our support group meeting held on 1 June
The St George’s ILD Support Group is for people living with interstitial lung disease (ILD), their families, carers and clinicians.
Members of the group are at different stages of the disease and have very different personal circumstances, eg whether they work, whether they have a garden, and whether they live on their own or with family.
All are in the shielding category, and some people’s spouses are shielding with them. Most had been staying in completely and before the shielding guidance changed, but a couple had been out for the occasional drive, and one regularly went out for exercise in a quiet area. Ironically, interstitial lung diseases were wrongly excluded from the original shielding list, so group members had decided what action of their own to take before the official position was amended. They also had to proactively get shielding letters, from either their GP or consultant.
The group had already planned to talk about how the shielding guidance should change, and what type of advice was needed, when, without warning, it changed overnight.
So we talked about:
1. Our feelings about the changes to the shielding guidance and whether our behaviour would change as a result.
2. What type of advice or information we need for the next phase to help us feel confident about making the right decisions for our health.
1. Changes to the shielding guidance
Everyone was concerned about the way in which the guidance changed, announced via press headlines with no warning and no input from specialist clinicians, patient groups or charities. There was also concern that vulnerable people were being encouraged to go out at a time when lockdown measures were being lifted for the wider population, meaning that more people would be outside, meaning greater risk.
There was also some cynicism about the reasons for the sudden change. Some people who were fully shielding said they would not change what they were doing (ie would not be going out). Those who were already going out in the car or for exercise did not plan to do anything extra. Some were obviously pleased that they now felt able to see a relative or friend, socially distancing, in a garden.
Here are some of the comments from the discussion.
“I feel it was an afterthought to put the new guidance out.”
“I’m more scared about coming out of lockdown now – staying in our bubble is the best thing to do.”
“I’m cynical about why they’re doing it – they’re not too worried about having a second spike.”
“There are more people out now and they seem more relaxed – I don’t feel there are enough facts to make solid decisions.”
“I’m not going to change – I’ve done 76 days and I’m not going to throw it away by going out.”
“I’m very cautious about the new guidance – we can see relatives in the fresh air now, but I don’t feel that we want to go out.”
2. What do we need next?
It was clear what people in the group need for the next phase – clear advice from specialists or people with knowledge of their particular health condition, and help with judging their own risks.
Here are some of the comments from the discussion.
“We need clear and concise advice that should be discussed with the NHS or healthcare professionals before being issued.”
“I’d need to see the number of new cases and death rate come right down – I’m concerned about another peak.”
“I’d like a letter from our hospital giving their back-up to whatever is advised.”
“Decisions need to be made by people who know the disease better, not treating us all as a blanket condition, when they are very different. We need more info from specialists.”
“I’d like to see test and trace working properly, and the results of more people being out, before relaxing shielding.”
“We’d like help understanding the risks of different actions depending on our own circumstances, from people with specialist knowledge.”
We hope the voices of those shielding will be listened to before more changes to the shielding advice are made. It currently applies to more than 2 million people with very different health conditions, and very different personal circumstances. The blanket guidance was appropriate at the start of the pandemic, when action needed to be taken quickly, but it now needs a more considered approach, and those affected by it need to be able to contribute to that approach.
Living on a transplant list during a pandemic
by Annelise Jespersen
Apparently, it’s week two of the lock-down but some of us are already a few weeks ahead of the rest of you. Welcome to our world.
If you’re finding it stressful to think about the risk of infection, how much to mix with people, and why that person on the bus won’t cover their mouth when they cough, spare a thought for those with compromised immune systems who live with this pressure every day.
— AnneliseJespersen (@AbyssTalks) March 6, 2020
Recently (although it feels like a lifetime ago) we’d just breathed a sigh of relief at getting through most of flu season unscathed. Now, I’m already nostalgic for the days when my biggest fear was getting a bad cold in case I passed it on to my husband, John.
He has IPF – a progressive, incurable lung condition – and has been on the lung transplant list since October. Getting a cold or flu virus isn’t just potentially disastrous for his health, but could also jeopardise his chances of a transplant.
So, hand cleanser, avoiding crowds, wearing gloves on public transport, missing family gatherings, nagging colleagues to keep their germs at home, pressing lift buttons with the elbow – we’re old (sanitised) hands at that.
One door opens…
It’s probably true of any chronic health condition, but being on a transplant list makes you feel as if you’ve just stepped through a different door to those around you.
Quite apart from the limitations caused by the illness itself, now you have to work out countless Plan Bs for getting to the transplant centre from wherever you happen to be if the call came – at a Tottenham game (me, not him), the theatre, shopping, the office.
Life can become a round of constantly second guessing yourself. Double checking the mobile reception at every entertainment venue. Crossing venues off your list because their mobile reception is terrible. Cursing yourself for not booking aisle seats at the cinema because you’re bizarrely worried about the fuss of climbing past a row of people if you need to leave halfway through the film.
Every invitation, night out, possible weekend away, any plans to be in different places from each other – they all become a logistics exercise.
But if that’s stepping through a different door, we felt we’d stepped into a different dimension when we first became aware of Coronavirus and its inevitable movement towards the UK. If getting a bad cold is threatening for someone with lung disease, then the prospect of a pandemic respiratory virus is unthinkable.
John began to self-isolate before it was fashionable, and I started to seriously rethink what I should and shouldn’t be doing to avoid even more undue contact with people. I caught earlier trains, worked from home more often, became an expert in supermarkets’ quiet times. I stopped going to football and seeing friends before the government even held its first Cobra meeting.
I’m not usually anxious, but every interaction became fraught with anxiety. And why wasn’t anyone else seemingly worried? Were we paranoid? A friend casually asked if the new virus was something to be concerned about. People knew enough to stockpile pasta, but not enough to keep their distance while doing so. Sometimes I felt like Sarah Connor watching the oncoming nuclear explosion, other times like the woman waiting for the tsunami in Deep Impact. As my favourite film is Singing in the Rain, that’s quite a cinematic leap in my imagination.
Fragile handle with care
Like many others with serious health conditions, we’d somehow created a fragile way of managing our world of risk and uncertainty and now it was shattered. It’s even left the ever uncertain possibility of a transplant more uncertain than ever – critical care beds are in short supply, transplant means peak immunosuppression at a time of a pandemic.
I have no idea if the government’s overall strategy is the right one, although we have made our own decisions ahead of any national measures. However, I’ve despaired at the wasted time prior to the first Cobra meeting, the terrible comms, anonymous briefings, unclear and inconsistent messages, lack of early public health advertising campaigns, a pandemic being turned into just another politics-media game show. And inexplicably becoming part of the dismal culture wars.
I’ve joined John in the 12 weeks of ‘shielding’ because any risk for me is clearly a risk for him, and that’s a risk too many, but we feel we’d been rehearsing for it in the previous few weeks. We’re fortunate that we have friends and family to get groceries for us, although I have’t yet felt able to ask them for the real essentials of Pringles or fondant fancies, and to be able to work from home.
It’s hard to envisage where we’ll be – personally and as a country – in a few months, and I try not to dwell on how long it might be before we feel safe seeing friends face to face. But at least for the next 12 weeks I don’t have to worry about having a Plan B for where we are if the transplant centre calls.
An interview with Dennis
So Dennis when did you first even consider going to the hospice and how did you even hear about it?
It must have been last year – November It was the last time I had a ‘blip’ I gone down with my breathing. I also had a trapped nerve and had problems sleeping, and I remember seeing this program on TV about Hospices and what they were really about – it’s about living not about dying and that was surprising to hear. It was about making your life better as you were living – and I thought that was very different from what I had understood and it seemed a very positive view … I also learnt that a person did not have to be at the end of their life to come to the hospice. Hospices are there for people with many different ailments including mental illnesses such as dementia so there are may different needs of those who visit hospices. Hospice staff also include other professionals such as bereavement counsellors, physiotherapists, as well as volunteers who attend regularly who will cut your hair and others such personal grooming services. So you’ve got all these different people available to you.
I am fortunate to have a community nurse visit me during the week and which was arranged through my GP. Once I phoned the Community service and was introduced to the ‘End of life Nurse’. It’s amazing, isn’t it? It’s not a very patient sensitive name is it? Once the nurse asked me to give an account of how I felt about the service and treatment I was been given? … which overall has been first class. However, I did say that one thing you should do I think is to actually change that name (End of Life Nurse), so hopefully that’s started the ball rolling. It just doesn’t put a very positive spin on it does it!? It does remind me of that quote from The Shawshank Redemption – “Get busy living or get busy dying”. I had been busy dying, I had given up. I recognize this now in myself, this has happened all the way through each time I go there… I hit another ‘blip’ and this has been over the years. It knocks the wind out of me … no matter what I cannot convince myself that I’ll come out of it, and so I have to accept it…and it takes me a few days, maybe a week or so to accept the fact that I’m gonna come through this and then accepting my limitations at this new lower level.
“Get busy living or get busy dying”
The Shawshank Redemption
So one day, I was in such a dark place at that time, I thought that I’ll go to my local Hospice and check it out.
St Raphael’s Hospice – https://www.straphaels.org.uk
It was purely because I thought, well, if I go there and they have all these things….. But actually, my faith was being tested … and they have a Vicar there at the Hospice. I was really down. So I wondered if I could attend the hospice as a day patient!
Some time ago I found out that for people with IPF when lung function deteriorates, it will never come back. So even if you survive this lower level of lung function this will be the new level you are on – you have to adapt…so I’ve accept that now. What helped me at that time was I did go to a physiotherapists as I also had a trapped nerve at that time and I ask my community nurse to contact St Raphael’s Hospice – https://www.straphaels.org.uk. Previously I had seen a program on the TV about Hospices and I had asked if it would be possible that I could visit there as a day visitor/member. So I was contacted after a few days by the hospice and I went there with a friend, but by then I was beginning to come through this dark period… To get through it you have to keep on doing things, even though you don’t want to… as this does help reinforce that there are still things you can do…and you can get a real boost from knowing that…. But it is hard to do the stuff you used to do..
The Hospice was fantastic… I was introduced to the nurse and she took me around and showed me all of the various things/services that they have available. If I hadn’t seen that TV program I would have though like many others that hospice was for other people and only for end of life care and this is just not so. I had assumed that I would go to the hospice once it all became too much for me to stay at home and I had no choice. So the hospice is more above helping people to live a better life.
So what days do you go to the hospice and what do you do when you go there? I go Wednesday and Thursday. The hospice is now widening the scope now as they are looking to something every day, such as physiotherapy on Monday and also Raki healing and things like that. Tuesday arts and crafts, Wednesday armchair yoga, which is great… and there is also the Men’s den on Thursdays.
Which is just men only and the nurses are there on hand if need be. I can’t go straight into yoga, so we will have a cup of tea and a chat first.
In the ‘Mens Den’ we have snooker, darts, jigsaw puzzles and a men’s quizzes as well to stimulate the brain!
There are people here with mental health issues, cancer, and other respiratory conditions such as a gentleman with COPD. The Hospice also has oxygen on hand so there is no concern that I’ll run out during the day. I do however have to carry out my own logistics before going out as I need to bring my own supply to get me there and back home again.
Visiting the hospice has been a real boost for me and although I’m not the greatest get up and go kind of guy, its important for me to have things in place, so the more hurdles I haver to over come the less likely I will be in going out to avail of these vital services. I will also tell the hospice staff that I will be there and unless something more urgent crops up I will be there because if I say I’ll come I will come, its in my makeup. And I have friends who I can call on also. If I don’t make this commitment then I’m likely to just stay in bed. ‘The longest journey starts with that single step’ and that’s never truer then when when applied to a chronic long term condition. This is so true as it can take me up to 3 hours to get ready as I need to rest regularly following the slightest effort… such as putting my shirt on, I will then need to sit down and rest for a while, the same with my trousers and so on. And then once I’m ready I then need to sit for 30 minutes of so and do nothing just to rest before I leave in the car to head off.
I really have to think more even about the house as I’ll go straight up the stairs without thinking. When I get to the top. I’m gasping for breath as I’m not getting enough air. This is how things can go wrong very quickly and it’s learning to do things differently so that I don’t get myself into these situations in the first place.
It’s like climbing Everest, I imagine as when I hear films from those who have climbed how they experience the feeling of not being able to get enough air into their lungs, and the huge effort required just to put 1 foot in front of the other. They could so easily be describing my regular excursions to my bathroom! This is what IPF can feel like when you have been living with it for a number of years, as I have been.
It was as if I’d become a member of an elite select group that was spoken of in hushed tones and secrecy, the ‘ILD Society’. In September 2013 I was diagnosed with the illness and my wife and I left the hospital benumbed and devastated. While we’re all unique the emotions we experience after diagnosis follow a similar pattern and have been well documented. Nearly a year passed and I hadn’t heard anything from the hospital, so I decided to contact them about a further appointment. If I hadn’t would they have forgotten about me, let nature take its course perhaps? During this period I did the usual internet searches regarding the condition and rather than the morbidity of most information I found quite a different outlook, shown by certain pulmonologists in The States. A pro active positive one, non flattering, yet optimistic. I wondered what was happening here, it seemed stuck in the dark ages.
After my second appointment a year later things began to change, from ‘nothing we can do’ to something, from an acceptance to a defiance, from placid to active. New drugs and treatments became available, more research, more awareness and optimism. This ‘secret’ and select group of patients were now nearly mainstream, though still the Cinderella of respiratory ailments.
In Tooting, South West London, St. Georges Hospital set up an eight week, 16 sessions Pulmonary Rehabilitation (PR) research programme specifically aimed at patients with ILD. Its purpose to determine if ILD patients responded better to specific forms of PR. Preliminary results were presented at the American Thoracic Society (ATS) conference in 2016. Interim research outcomes proved beneficial to those patients who attended regularly. I took part in the study and from this positive step we formed a support group which first met in September 2016. From the outset the group intention has been to help all ILD patients and their carers by providing advice from visiting professionals and clinical specialists, by networking and providing information on new developments and some much welcomed chat and banter over tea and biscuits! Through this support group one began to realise the immensity of our challenges and how our rare chronic illness is perhaps not so rare!
The variety and manifestations of ILD, the numerous ways patients manage themselves, the different types of life-style and locations, all these factors personalise our condition. In my daily struggle for survival this knowledge has given me a resolute compassion which, perhaps, only those with chronic illness’s can appreciate. What works for one person might not work for others. As we have no answers, only examples, our elite community needs to hear them and find patterns that may lead to better treatments and hopefully a cure.
Since that dreadful day of diagnosis I’ve learnt much which I try to apply to my life, not always successfully. How to live as best we can seems the priority. We can’t tame the beast but we better learn how to ride it. Quality of life over quantity and working within one’s parameters. Setting targets for yourself (great way to exercise the brain cells) and adjusting to the varying stages of the illness. Being alone in your intimate endeavours while emotionally together with others. It might take double the time to do certain tasks, one might cough and splutter when heavily exerting oneself, but having a go means one is still in the saddle. Our body tells us things that the medical profession are only beginning to fathom. By being pro active, no matter at what level,we can contribute to our own well-fare and the advancement of care. Our experiences and choices, no matter how arduous or traumatic, how long or short, are no longer insignificant. We’re all pioneers whether we like it or not, we owe it to those gone before us, to ourselves and those to come. ILD progression is stealthy and mute, we patients must give it a voice then silence it forever.
The following letter was submitted to the Evening Standard in April 2017 and was published on 26 April 2017 entitled “Pollution affects the health of our lungs“. The complete submission including a poem written by Lesley has been reproduced below.
To The Evening Standard Editorial Department
We’re very pleased to see the coverage you have been giving to the issue of air pollution in London and the Mayor’s campaign to reduce this.
London’s air quality greatly affects all those with respiratory problems and the many people with the different types of interstitial lung disease certainly feel the daily variations and different impacts of air quality.
Idiopathic pulmonary fibrosis (IPF) has the worst prognosis of all restrictive lung conditions, collectively known as Interstitial Lung Disease (ILD), with a median mortality rate of 2-5 years from the date of diagnosis. Your recent efforts to shed light on this little known and little understood disease, including the news story about opera singer Emily Estelle’s father, is most welcome and timely when one considers the increased publicity of air quality in London and the general rise in childhood lung related illnesses.
This Cinderella of progressive, incurable terminal conditions is, however, not going unchallenged. In 2015 St. Georges Hospital, Tooting set up a Pulmonary Rehabilitation research programme to help patients living with ILD. The primary purpose of the programme was to better understand this set of lung conditions and specifically to look at what types of exercises are beneficial, which patients can undertake to help preserve lung function. The programme consisted of a series of physical tests and exercises, designed to promote lung health, pulmonary muscle strengthening and improved breathing techniques.
The program was supported by highly qualified and motivated staff, including physiotherapists, consultants and researchers. The results and efficacy of the trial were illuminating and proved to be beneficial for patients.
These patients have now established an ILD Support Group (www.ildgroupstgeorges.com), based at and supported by St George’s Hospital and is further supported by the British Lung Foundation (BLF.org.uk). The group meet each month to hear talks from clinicians and invited speakers on all aspects of ILD, how best to help patients themselves and their carers to understand the condition and help maintain lung function and general health. Group members also support each other by sharing their own experiences and stories including tips and pitfalls they have experienced along the journey.
Prior to 2016 it was thought that approximately 15,000 people lived with IPF in the UK. However, in 2016 research by the British Lung Foundation found that 32,500 was a more accurate figure (over twice the original figure!).
Coupled with this upwardly revised figure of 32,500 and with air quality in London continuing to deteriorate at an alarming rate we can only anticipate worsening lung health in the years ahead and particularly for all Londoners across all age groups.
When I was diagnosed in 2013 there was the “go home and wait to die,” unwritten finality. Now there are support groups, 2 new drugs to help reduce the progression of the disease, where before there were none, helpful life-style techniques and a part of the NHS that deserves praise.
Along with the British Lung Foundation we strive to increase awareness and improve the situation for those living with this condition.
Finally I enclose a piece written by a member of our support group which tries to convey what it is can be like living with IPF; our hope is others will never have to.
J. Conway and L.Gresswell.
St. George’s hospital, ILD Support Group representatives.
The types are many and varied, once you are in the know,
consistent signs confirm its presence, this struggle for air,
though its early manifestations stubbornly refuse to show,
until you’re gasping hard with non pink lungs threadbare,
then the journey begins, all well charted to a certain stage,
after which mother morphine and tight chest steel bands
your template, a valedictory for the battle you’ve waged,
mirror revealed in my blue veined river delta thin hands;
my withered bronchial tree sapped by a fibrotic process,
bruised blood flow and clubbed nails, are my scar signs,
others varied aspects display, all beyond medical redress,
as this condition is too subtly rare for our emotive times;
who cares if it hits you first going up stairs or an incline,
not a chronic breather whose progress is speed of decline.
IT WAS ONLY A WEEK AGO
Optimism and a lightness of spirit had kept him alive,
turned his dissipations into moments of unalloyed joy,
without originality or intellect he realised when a boy,
so for a genial human intercourse he decided to strive,
by his failures he was condemned for lack of remorse,
of his success nothing said, dignity a matter of course.
Gathered during his earthly span an unstoppable mass,
a pure concept from that holy book of good intentions,
religious in its fervour nothing about discord mentions,
where all are free and chained, no concern left to pass,
those not wrapped in this dimension scramble to enter,
to be monitored, content like a cat food label with purr.
Whether in or out all are accountable, it is for the best,
so he was told with missionary zeal by his new doctor,
he said in an affable way though the medic was a bore,
that he would wear his smoking jacket having the test,
the result of which could be read on a numerical chart,
its poor internal organ scores indicating a dodgy heart.
After his week in hospital for a major check-up ended,
his dissipations had become crimes, moments of woe,
the hard won geniality too had been categorised a foe,
now on digital read outs his once happy life depended,
when really nothing much was unnatural or so wrong,
with his spirit chained the reckoning wouldn’t be long.
LAZSLO CONSTRANI (NOVEMBER2011).