Good evening everyone,

A few years back, around 2018/2019 I believe, I joined on here and posted quite a bit so some of you who have been around a while may remember me. I joined here after reading Charlene’s incredible blog and along the way found some wonderful people online here who have all like myself been dealt the difficult blow of having…

Read more

Good Morning all (it’s 11.30am here in the UK),

I’m not sure if some of you may remember me. I posted quite regularly on here a few years ago, I think the last time was in the early days of the Covid pandemic in 2020 in fact. I originally found this forum through Charlene’s incredible blog posts of living with IPF at a young age, and have… Read more

So many people are getting into virtual workouts which is great! So many apps and websites are offering free memberships as well so it’s a great time to try and increase your stamina.

Here in the UK we have a fabulous chap called Joe Wicks who does daily 30 minute ‘PE classes’ for the kids, but it’s taken the nation by storm and everyone is… Read more

Lovely to see so much knitting and sewing. I wish I had some more supplies on hand so I could do the same!

I spent the first week completing a big jigsaw we bought from Massachusetts on holiday a few years back and then made my first ever Simnel Cake for the Easter holiday. I’m just about to crack out another 1000 piece jigsaw sitting in… Read more

Hello everybody! Long time no see. Apologies it’s been a while since I logged in. Life has been very busy balancing work/study. Due to the current situation my student life has changed dramatically as I can’t go on placement in Hospitals, however I am working shifts in the Radiology department as an Assistant to help where I can. Very surreal… Read more

Hello everyone!

I don’t use any social media except Twitter so it’d be nice to follow some of you if you are online over there. I find it a great source of information, getting to know people and feeling a bit more motivated each day. Maybe we could some hashtags going to connect easily on the Twitter apps? Let me know if you’re… Read more

Hello everyone!

This was something I thought about a lot as there was a point in time where my Dad was regularly being admitted to Hospital due to the fact that quite early on in his diagnosis he had a bad case of pneumonia, and his disease progression worsened quite significantly due to this and the fact they unfortunately (and unknowingly)… Read more

Hello everyone! Apologies for my absence over the last few months, I don’t know where the time goes!

Popping in on this thread to see if anyone has any new recommendations for reading. I recently finished The Snowman by Jo Nesbo, the same author I’ve pretty much committed to all year round.

I have however also loved Unnatural Causes by… Read more

Hello everyone! Thank you for raising such an important topic Mark, and something which I think really pins down the need for emotional and psychological support to those diagnosed with PF – something which is severely lacking and that truly saddens me.

I feel I may have mentioned this in my past posts, but I feel it is something I… Read more

So, I was in Boston a few weeks back which always gives me a bug for eating seafood but of course those gorgeous buttery lobster rolls just aren’t something you can treat yourself to on a regular basis unless you want to make an enemy of your arteries. I looked for some simple healthy alternatives and had a go at this really easy and tasty… Read more

So, I’ve had an idea I’ve been sitting on for some time and at present I’ve got a couple of weeks free before I start my studies in September so thought I would commit some more time to it. I’m an avid diary writer which is something I picked up from my Dad who was meticulous at filling one out for years, and it was something I encouraged him… Read more

oO no I haven’t yet but I recall you recommending the movie! I might have a look for the book whilst on my holiday in a couple of weeks as it will give me more time to binge it.

Oh wow thanks for letting me know that RJ ( @rjday )  I wasn’t aware that she had since remarried. Such a heartbreaking tale, I’m so glad she found new happiness. Her ending to the book was so moving and brought me to tears. I’ve recently started reading a book by Sue Black who works in forensic anthropology that’s a really interesting (and… Read more

Oh my goodness I read When Breath Becomes Air a few years back and it broke my heart, Paul Kalanithi wrote so elegantly and eloquently. Such a sad loss.

I believe it was this one, How Death Becomes Life that I saw on the bookshelf at Waterstones. I resisted the urge but I might buy it from the airport on my travels in a couple… Read more

Hello all! I worked in computers in a former life so anything to do with advancement in technology interests me quite a bit. I’ve read about how a Radiologist in the UK is working on systems that automatically detect fibrosis on lung scans to help improve the diagnosis rates (I’ll post about this below). This piece of news suggests… Read more

Anyone who likes memoirs/biographies then I recommend Stephen Westaby’s second book called The Knife’s Edge, I binged it in a couple of days. Really heartbreaking true cases of his time as a cardiac surgeon. If I haven’t mentioned it, his first book Fragile Lives was also a really good read. I also saw a new release which is memoirs from… Read more

I used to love reading books about self healing as a teenager, and especially now self care and mindfulness is popular in the mainstream it’s nice to learn more. If you like the Scientific/Psychology then I really recommend Ruby Wax and her books about mindfulness and mental health, they’re really insightful at understanding the… Read more

Wow Peter, what a small world! Great news that you had these scans as part of your diagnosis. Have you had any follow up MRI or CT scans alongside the FVC breath tests or was that solely to enable a diagnosis in your early symptoms? How have you found the support at Sheffield? My Father was initially referred there but found some of… Read more

Thank you for your response Mark, and your kind words. I nearly cheered thin air reading that there are alternatives to FVC tests as they were awful for my Dad, and I never truly trusted how accurate the results would be. I’ll keep you posted, I’m hoping to gain some work experience in this area whilst I’m studying.

Hello everyone!

So this September I’m going to be starting a course in Radiography and pursuing a future in clinical research associated with respiratory disease (in the hope of sticking with Interstitial Lung Disease). I’ve already been scouting in my area to see what exciting things are happening as regards trials and research associated… Read more

As much as I want to think I’ll be someone who will adapt to e-reading, I just can’t but love the feel of advancing through a book! And I don’t really want to invest in something I might not use, but I’ll see if Amazon have any deals. It will always come in handy when I’m travelling.

How about audiobooks? A friend of mine swears by them when… Read more

Hello Chuck! Nice to hear of another avid reader. My Mum has an iPad actually so I might have a looksee at the Kindle app for now instead of investing in a proper e-reader. They turned the J.K. Rowling/Robert Galbraith series into a television show in the UK I believe, quite Sherlock style from what I remember and fairly interesting. Another… Read more

oO I will look this up as it keeps popping up on my Amazon feed to watch. I always have to read the book version first though so I might just have to get my hands on it!

Hello Mark, thanks for sharing your story and also the important awareness you’re doing and that those around you are also going above and beyond to share your story in the hope of making the disease more known within the community.

At present the status of Pulmonary Fibrosis is of similar status in the UK. The current statistics we have… Read more

Thanks for sharing that news Lorraine, it’s encouraging to hear that governments and politicians are becoming more open minded to these important matters that play such a big role in so many peoples lives. Ultimately I hope it gives the people the right support should they have to face this kind of issue. And of course, hopefully open… Read more

Definitely fatigue and general tiredness is a major symptom of living with lung disease due to the restriction of oxygenated blood around your system, plus I agree with your notion on the mental health impact as depression and anxiety will give the same fatigue and tiredness that the low saturation levels will. That’s why I believe it’s so vital… Read more

It’s interesting to hear your thoughts on this as I never really assessed Dads heart. He did lose a rapid and significant amount of weight in a short period of time due to pneumonia, and though he did regain muscle strength back, he never really recovered any weight despite bumping his calorie intake up. They did assess his heart quite… Read more

It would be hard for me to sum this up as I feel we could all write quite a list of the things that are the biggest struggles, and our opinions can probably change day by day. For me though, I think it sums up into the fact that there is such a lack of awareness which means the research and funding opportunities are far fewer, diagnoses takes… Read more

Hello Wendy, sending my love and thoughts to you. Losing mobility and independent is such a heart breaking and frustrating symptom of dealing with lung disease. Like Mark said, are you using supplemental oxygen at all? That can help immensely at providing oxygen and support to remaining active. Have you also had the opportunity to attend… Read more

Wow Charlene, that is so lovely that someone came to the rescue to ease your anxieties. I agree wholeheartedly with you that as individuals it can be so easy to become self involved because of all the angst and hate around us, it’s so easy to get hurt in this cruel world that we forget to show simple acts of kindness, or people are… Read more

oO if they have any sense then they wouldn’t hesitate at a trip to Hawaii! I have spoken to people in the past who managed Hawaii on quite a tight budget because they were doing extensive travelling at the time, but like you say, a little research will help you figure it out! I had no idea until my parents went how far away it was from the… Read more

I knew I had one by Jodi Picoult in my collection somewhere but I might have donated it into charity recently as I had a massive clear out in my bookshelves. I will definitely check at the library as I’ve seen her books in there many times, definitely need a new author to read as I always get myself into a rut obsessively reading the same one!

@roger-coles ,

 

oO if you like Jo Nesbo and the Stieg Larrson series, there was a similar one I got into the year before last by Samuel Bjork. I believe the third book in the series comes out sometime this year but I adored the first two, very similar in the Nordic crime thriller but again, it has some unique and complex characters mixed in.… Read more

Outlander sounds familiar. Did they turn that into a TV show?

I was chatting with a work colleague the other day who showed me some drone footage he took in the Yorkshire Dales that looked stunning! However, I wouldn’t trust myself with such an expensive piece of kit.

A part of me was considering a GoPro for when I’m travelling so that I can shoot videos as well, but I still like the idea of… Read more

So, I’ve recently joined WW (or what was known as Weight Watchers) to help me get better control of my diet and exercise and there is some really lovely simple dessert ideas, plus lower sugar cakes and buns to make.

This Jaffa Cake looks incredible and is a lighter version than making a full on cake. I would love to have a go at… Read more

Hi Jean, the French system sounds the same as us in the UK in that relatives can block consent even if the person made it clear their wishes were to donate organs. They still actively encourage the conversation to ensure this doesn’t happen. There has also been press coverage lately regarding how some organs are wasted because of a lack… Read more

@ramblingolfer (Bill),

 

Glad to hear you’ve tried a variety of options, and I’m sorry to hear that most of them seem to be so unsuccessful. Unfortunately they were the only options we had available to us, with the exception of when Dad was admitted and he was using a humidifier alongside his oxygen. I’ve never seen this available in… Read more

Thank you Mark! I was fortunate in my time acting as a Carer for my Dad that I was able to study a Masters of Science in Psychology and focused my dissertation on the Psychological Impact of Pulmonary Fibrosis whereby I interviewed patients on the mental health impact. Learning about Psychology also helped me understand my own mental health a… Read more

Alas not from Wales but Derbyshire in England, about a two hour drive from Hay on Wye. It’s such a beautiful place though isn’t it? A whimsical little town in the middle of the stunning Brecon Beacons, we stayed in a cottage nearby a few years ago whilst the festival was on and had the loveliest summer days exploring the area. If you’re ever… Read more

oO yes I think I did pick up  a Jodi Picoult book last year that I haven’t gotten round to reading just yet. I’ve heard good things about her, especially considering I like Alice Hoffman and it’s similar sort of writing styles!

I will look into the Sarah Knight book as I’ve seen it in the bookstore a few times and I love an easy humorous… Read more

I’m sure there are many of us on here who are avid readers, so I thought we could share some of our favorite books and let each other in on what we’re reading at the minute. I’m a big fan of fiction and non-fiction, and tend to go back and forth depending my mood.

I’m currently working my way through the Jo Nesbo Harry Hole series and am in… Read more

Wow Charlene, what a heartbreaking but inspiring story. I’m surprised I hadn’t heard of this before as it is such an awful tragedy for the team and all those involved, even the fans and the community. What a devastating impact it must have been, but a powerful message to encourage organ donation which as you say, can only be a… Read more

Hello Mark, thank you for your very kind response. It’s always nice to feel part of a team, especially when you might feel isolated in your illness or isolated as a Carer. I think relationships can easily become very strained if there is no communication, but people also solely label themselves as patient and carer and forget what life was… Read more

Hello Jan, I agree wholeheartedly with your attitude and feel the same. Of course we can’t always be positive, but in the last year or so I’ve found a new attitude in just accepting what you can and can’t do. Let me tell you, boy it is like a weight off your shoulders in just knowing what you can and can’t do, and not putting that pressure… Read more

Flu season is a big thing here in the UK now and there is a lot of marketing to encourage people to get their flu jabs. We’re pretty blessed with our NHS that it’s free to all over 65, to young children and anyone who will be vulnerable. However within Healthcare (and for the NHS) they set targets to ensure staff also get their flu jabs and… Read more

Nice to hear from you Bill and that things seem positive for you considering everything you’ve recently been through. My Dad struggled a lot with the cough also, it was very dry and if it got bad it really triggered his exacerbation. Have you tried eucalyptus oil? That’s brilliant, very similar to menthol in that it’s very good at helping… Read more

Thanks for sharing this Mark, it’s super helpful to know how it might compare. How did you feel post transplant as well? I guess it must be extremely difficult because there are still so many risks to your health, but also knowing this is a clean slate in a lot of circumstances. It would really interest me to interview transplant patients… Read more

My Dad always felt the same with his down days, but myself having lived with depression ever since I can remember, it’s absolutely important that some days you have to accept you can’t fight the blues and just let them weigh you down a little bit. Of course it’s vital your life doesn’t always feel so down, and you find positive mechanisms to… Read more

I am very lucky indeed to have this gorgeous national park on my doorstep. It’s celebrating 70 years since it was created this year, and it’s also the oldest national park in the UK. Lots of history to it but lots of interesting mythology and ghost stories to be shared as well! Can’t wait to get out with the camera and hopefully share some… Read more