[Scott Robertson]

Hi Amy,

sorry too hear about the tough time you are going through just now.

I am 54 and have recently gone through my own diagnosis of PF so the initial worry and concern that I had is still very prominent in my mind so I am mindful of how much of a shock it can be.

It can be both daunting and overwhelming to receive any kind of diagnosis and especially if you received that news through quite an impersonal  way as you are not in a position to then ask questions.

It doesn’t always help that online searches (that we likely all do) can then bring up horror stories and often inaccurate information and out of date statistics.It then easy to assume that everything you read is factual and associated with how you are feeling.

Not an expert by any means but my understanding of the disease you mention is the following.
Bibasilar fibrosis is a type of pulmonary fibrosis that affects the lower parts of the lungs, known as the bibasilar regions. It is a chronic and progressive condition that causes scarring and thickening of the lung tissue, making it difficult to breathe. Bibasilar fibrosis can be caused by a variety of factors, including:

• Exposure to environmental toxins, such as asbestos or silica dust
• Autoimmune disorders, such as rheumatoid arthritis or lupus
• Infections, such as pneumonia or tuberculosis
• Idiopathic causes, meaning the cause is unknown

I think it is good that you have sought a consultation with a pulmonologist even if you did have to do this yourself and hopefully they will be able to give you a clearer picture of what’s going on. Monday isn’t too far away. My advice for what it’s worth would be to take someone with you as it is very easy to be overwhelmed by facts and information only to forget or not quite be sure what the consultant said afterward, I have definitely been in that situation and I am sure I wouldn’t be alone. It can also be helpful to write down questions you want to ask as remembering things can go out the window when faced with a situation you are already going to be worried about.

It may be that the current doctor really isn’t aware of the disease, we like to think doctors will know everything about everything when the reality is very different.

It is really easy for me to say try not to worry but my advice is not to look up things online, enjoy the rest of the week as best you can, and see what Monday brings. Whatever the outcome you will be far better informed.

Sorry I can’t be more help

My thoughts

Scott

[Scott Robertson]

Hi Dennis,

Also from the UK and up in Aberdeen.

My knowledge on the use of Hyperbaric chambers is very limited but it is something I looked into briefly as I had come across related articles to do with sports recovery.

I know the chambers have been used for various things such as helping with sports recovery, wound infection (skin grafts etc), Covid recovery, stroke recovery and even beauty therapies but not too many studies done on how it would help with lung disease, at least I can’t find many studies online.

You can even by costly home chambers for your personal use.

In my head, the theory kind of makes sense as you are basically saturating  the body with oxygen for a prolonged period of time under pressure but I am sure it is not as simple as that. My initial thoughts would be that your o2 levels would surely have too be extremely low at rest for you to gain any possible benefit and my thinking would also lean towards that the treatment using a chamber would have to be something you would have to do regularly. I can’t imagine any initial benefit you might gain from a session or even a block of sessions would carry over for days or weeks later.

What I did learn though is that there will likely certainly be restrictions if you have other underlying health conditions whilst other medical or past medical conditions can rule you out completely.

The only advice I would give you is speak to you’re consultant about it fully, don’t just be taken in by the webpages or glossy brochures of the companies offering the service.

You certainly have nothing to lose by asking your consultant the question though. I would be interested to know what they say.

Not knocking it by any means but if there was a benefit to those suffering from PF related diseases then I think many more of us would have heard about there use already.

Perhaps still very early doors and my dubious nature is coming from my lack of information and knowledge, just don’t always go by the information presented to you by the companies themselves who provide the service.

Not much help sorry, just my view

Scott

[Scott Robertson]

Hi Jessica, many thanks for replying and I am sorry to hear that you are having a tough time of it just now. I don’t know how much solace you will get from hearing me say that you are not alone in feeling the way you do, it’s natural and often comes from feeling like you have no control but you are definitely not alone and I am glad you have managed to share your experiences…thankyou.

I know I feel deflated at times and during those times it’s easy to get caught up in a spiral of frustration, anger, worry and a hundred other emotions. I have come to terms with the disease and symptoms (just…and on a good day) but yep, it’s not easy seeing your life seemingly unravel before your eyes with very little you can do about it. As a younger age group we definitely have our own unique problems and challenges.

There is a Scottish word scunnered, which means completely fed up, sick of everything, no patience for anything and generally disgusted with life in general…..I have definitely been scunnered!!!

like you I have had to face family members who perhaps have been unintentionally unsupportive and it can be easy to withdraw from those people as it can seem like just another hassle you don’t need right now. It often makes me feel completely exasperated and exhausted.

It is easy for others to give advice and maybe believe they know how we must be feeling but in the end we are the ones who have to go through it, and it’s difficult. I guarantee you are not the only person with IPF who has at times felt useless, a burden or felt that they are letting family and friends down through having to sometimes make awkward decisions… I recently felt the wrath of a family member who wasn’t happy that I wouldn’t be attending a wedding…and it wasn’t even their wedding!!
I think some of it comes from a lack of understanding and or empathy as our disease isn’t well known and is often thought of as an older persons disease…..”what do you mean you’re lungs don’t work, your only 54 for Gods sake”

Are you part of a PF support group?.Although we can glean information from online and maybe stumble across something that might be of help I have found that there is no help like the help that comes from hearing from others in a similar position, the sharing of worries, of stories and of information on help with a myriad of things such as where to access financial help, what benefits a person may be able to claim etc. The best help is from hearing from others going through the same thing and if you haven’t already then try reaching out.

I really hope that things get better for you and that you do manage to get yourself on an even keel. Don’t be scared too post on this forum, from my short experience on here, it has many knowledgeable and empathic individuals who give their time too listening and responding to posts with great information, advice and help.

Many thanks again for replying and don’t be a stranger. I am always here too listen as are others.

My thoughts are with you

Scott

 

[Scott Robertson]

A younger person diagnosed with pulmonary fibrosis (PF) may face numerous challenges when the disease i believe is typically associated with older individuals. As we are aware PF is a progressive and life-altering lung condition characterised by scarring of the lung tissue. Although as the original postee of this topic I have already talked about my own impressions I thought that I would instead list some of the difficulties I believe someone of a younger age might encounter and why the needs of a patient changes depending on age.

I am aware that the below can cross over to all ages and I am not trying to minimise the effects of this disease on us all regardless of age. Indeed I believe the older group will have their own set of challenges that a younger group of patients won’t fully understand.

I wanted too post as reading through this forum it became clear fairly quickly that a lot of us posting were stating their age group as in their 70’s 80’s and 90’s

so here we go…just my thoughts.

1. Misdiagnosis or Delayed Diagnosis: Due to its association with older adults, PF may be overlooked or misdiagnosed in younger patients initially, leading to delays in receiving appropriate medical care.

2. Lack of Awareness and Support: Younger individuals with PF may find it challenging to access support groups or resources, as most of the available support networks might be geared towards older patients.I truly believe that the support needs to be tailored and not just a blanket cover all.I have already mentioned as an example previously of my attendance to a rehabilitation group that was completely unsuitable for my needs both  physically and mentally.

3. Impact on Career and Finances: PF can severely affect a person’s ability to work, leading to career disruption and financial strain, especially if the person is at a critical stage of their professional life.

4. Emotional and Social Isolation: Coping with a chronic illness at a young age can lead to feelings of isolation and difficulty connecting with peers, who may not fully understand the challenges they are facing.I have found that when others look at me or interact they don’t see someone who is suffering and struggling as my outward appearance doesn’t hint at what’s happening and the daily challenges I face.

5. Treatment Options: Some treatment options for PF may be less studied or suitable for younger patients, leading to uncertainty about the best course of action.

6. Family and Relationship Dynamics: PF can place strain on family relationships as everyone navigates the emotional and practical challenges associated with their loved ones illness.

7. Long-Term Planning: Younger patients may face unique challenges in planning for the future, such as making decisions about career, starting a family, and financial matters while dealing with the uncertainty of their health and prognosis.

8. Psychological Impact: Facing a life-altering illness at a young age can lead to anxiety, depression, and a need to process complex emotions related to mortality and future prospects.

9. Treatment Adherence: Younger patients might struggle with treatment adherence, as they may not fully comprehend the long-term consequences of non-compliance.

10. Stigma and Judgment: Younger individuals with PF may encounter stigma or judgment from others who do not understand that this condition can affect people of all ages.

In conclusion, being diagnosed with pulmonary fibrosis as a younger person can I believe be a challenging and isolating experience. It is crucial for healthcare professionals, support organisations, and society as a whole to recognise that PF can affect individuals of all ages and provide adequate resources and understanding to address the unique difficulties faced by younger patients. Empathy, awareness, and tailored support can make a significant difference in improving their quality of life and overall well-being.

I do believe things are improving but my experience has been one of feeling isolated, misunderstood and ultimately pigeonholed as a way to “fit me within” a certain demographic and group as opposed to being an individual with unique challenges.

regards and best wishes to all

Scott

[Scott Robertson]

The ones from O2 totes look good and well thought out, that is the make I have my eye on and as you have said they are available on Amazon and seem to get great reviews.

In Scotland the machine is provided for you if you are medically reviewed as needing it, but they are only supplied with the over the shoulder case which I find is a very uncomfortable and awkward solution.

Take it easy everyone and stay healthy

Scott

 

[Scott Robertson]

No worries,

I believe Etsy is an e commerce setup so will ship wherever worldwide and O2 totes is based in the USA so maybe still worth a look if you can’t find anything on eBay.

Currently sweltering in Scotland, not used to three weeks of 21c temps!….I had too look out T-shirts Lol.

Cheers

keep us posted on the search

Scott

[Scott Robertson]

Hi Mal,

I have been looking into this also for my g5 and there are a few options out there.I wanted something that would hold the POC without the bulk or extra storage space that I wouldn’t use.I really just wanted something that would sit comfortably on my back allowing me freedom too exercise around my local parks.

Inogen themselves do one but seems to have too much bulk and extra space for carrying other things.

the company Etsy does G5 POC backpacks and seem too get good reviews

There is also a company called O2totes that also do a variety of packs for your model.

Apologies but for some reason I couldn’t copy in any links for you too click on.

Not sure where you are located, I am in Scotland.

I am likely going to take the plunge soon and buy a pack of some description as the over the shoulder supplied carrier just isn’t working for me.

You may already be aware of these companies, but if not hope this helps.

Take it easy

Scott

[Scott Robertson]

Apologies, the book is called Breath, not breathe!

I got the author right at least.

[Scott Robertson]

Hi Mary,

Thankyou for sharing your story.

Yes it is tiring at times to live like so many of us do, being ill and having symptoms that really affect your daily life can feel burdensome and exhausting, and yes even from doing everyday mundane things! .It is good though that you acknowledge this and don’t try and shove it away as something you shouldn’t be thinking or feeling.All too often we can try and always put a brave face on things when inside we can be struggling so you are definitely not alone in feeling tired, fed up or even down right peaved off at times.I would think there was something wrong with you if you weren’t lol.

It is good to hear that you are keeping active. It is yet another of the peculiarities of this disease that we are told that exercise is vitally important when at times that can be the very last thing we want to be doing.

I was ex military and am still currently in a job where physical robustness plays a part so I understand the benefits of exercise both from a physical viewpoint but more importantly now from the mental health side of things…..I think it’s great that you are exercising so stick with it….just be mindful and listen too what you’re body sometimes tells you, having the occasional day off can be as beneficial to our wellbeing as hitting those weights, it’s all about finding that balance.

I can well imagine that the altitude you live at must have an effect on you complicating things further.

This seems to be a brilliant forum where information shared can help other figure things out so don’t be shy in posting and reach out anytime you feel the need.

From across the pond in Scotland

kindest regards

Scott

 

 

[Scott Robertson]

Hi Donald,

Thank you for  sharing your own experience.

Having trawled through the vast majority of this forum it is surprising to read that so many people are being advised against the lung biopsy route.

In my case I was told very simply that because I am 53 that they didn’t want to run the risk of causing damage to my already scarred lungs that could potentially effect me for years too come.

I wasn’t and still am not convinced by this argument!

It seems obvious to me as a layperson that taking samples from the area that is affected is likely to return a result that in conjunction with other tests and scans can give the best positive and secure diagnosis.

From there prognosis and any treatment plan can be made.

I suppose we always assume that the advice we are given is accurate at the time and that the trust we put in the healthcare professionals is warranted and also reciprocated.

Again Thank you for your input, and I will be reevaluating a few things I have been told.

Take it easy my friend and the very best to you moving forward

Scott

 

 

 

[Scott Robertson]

I think getting a second diagnosis would benefit you and hopefully put your mind at ease. If they are able to evidence and rule out IPF then they should be able to explain to you why they have come to that conclusion. Likewise they should be able to explain to you why they have come too the conclusion that you have ILD.

IPF is part of the ILD family ,just with its own peculiarities and diagnosis but there are hundreds of ILD’s.

Getting a secure diagnosis is key, unfortunately this isn’t always easy or quick but is important so one piece of advice I was given and would suggest is ask questions of any medical professional until you are satisfied and don’t be fobbed off, after all it is you’re health and life. Any decent professional should take the time to explain things in a manner best suited to you,If they can’t then find someone who can.

I would also really suggest to anyone going through diagnosis that taking someone with you too appointments (even initially) can be beneficial as after a consultation where you can be bombarded with statistics, results  and information it is really easy too forget what you’ve been told, or get mixed up.I include myself in this!!…several times.

As for trials, there are trials ongoing for a number of ILD’s so if this is something that is important to you then look into these once you get a secure diagnosis.

I hope you get some clarity soon and are able to move forward

Good luck

Scott

 

 

[Scott Robertson]

Charlene,

Forgot to say but purchased the guide to pulmonary fibrosis and interstitial lung disease book

A fantastic resource for anyone

well done for your contribution and time to this project.

Scott

[Scott Robertson]

Hi,

having not long been diagnosed with PF as a complication of the ILD Hypersensitivity pneumonitis I believe that a lot of the evidence for any PF / IPF diagnosis comes from High resolution CT scan and pulmonary function breathing test results which will be obvious to any clinician reading them.

I am likely to have scarring that looks different to those with IPF and vice versa but any change to the appearance of the lungs regardless of cause would likely be highly visible.

I was also advised against the lung biopsy route as complications can occur

I would perhaps ask for a second opinion on the Scan results and ask them too better explain how they have reached their conclusion to both rule in or out IPF, especially as you are stating that your brother suffers from IPF.

If you end up with a secure diagnosis of having an ILD then concentrate on dealing with that, many ILD’s have very similar symptoms and prognosis to IPF albeit at a more leisurely protracted pace, although the end result can be the same.

not a professional by any means and could be way of the mark but the above is my understanding, but I certainly wouldnt be hoping to have a diagnosis of IPF just so you can get on a trial.

Believe me ILD is tough enough.

 

 

[Scott Robertson]

Hi Joanne,
I am 53 and have recently been diagnosed with pulmonary fibrosis from a long time illness of hypersensitivity pneumonitas. I am also from the U.K.

I am sorry to hear about how you’re husband got the news, through the Mail seems extremely unprofessional in my opinion.

having been diagnosed I can sympathise with the amount of information that is available online and it is very easy to see information that can sound very scary and more often than not contradictory.It is important though to recognise that there is a big difference between IPF and PF and yes, from what I have been told fibrosis is always progressive, although this is very much dependent on personal medical circumstances.

Moving forward I think it is very important to get a proper diagnosis of the condition, the effects, future treatment plan and ultimately future prognosis.

I don’t know your doctor but it seems that they do not have the necessary knowledge or skills to get the best for your husband. I would ask your practice if there are any doctors who specifically have an interest in respiratory illnesses and ask to see them moving forward. Absolutely do not settle for 2nd best because you might have always gone to a particular doctor etc and feel some loyalty. Also don’t be scared to contradict advice or opinion.

The fact that you are on this forum suggests that you are worried enough to reach out and loving enough of your husband to care.

you should perhaps consider joining the group forum for carers, family etc as they might be able to support you.

Sorry I can’t be anymore help and I hope things sort themselves out. Just don’t be scared to push for things.

 

 

[Scott Robertson]

Hi Arjun,

Sorry to hear about your diagnosis of IPF.

It might help others give advice to you if we knew a little about you and in particular the fears you have. You mention your independence so this is obviously very important to you and rightly so and is likely something that lots of people with an IPF diagnosis must wonder about and perhaps struggle with.

There is no reason for you to lose you’re independence as such, you just need to work out how to best manage your symptoms more effectively and this forum can certainly give support and advice about that. I would also look to see if there are any local support groups in your area as they are a fountain of knowledge.

Looking forward to perhaps hearing more from you and learning where you are on this IPF journey…you are on oxygen but what type, portable, cylinders, amount of oxygen, are you mobile, are you active , where you live etc can make it easier for us to perhaps narrow our help to you.

Take care

Scott

[Scott Robertson]

Hi again Dennis

i wasn’t meaning too come across as being negative about it, I just don’t see much medical studies on it to validate it one way or another for those who suffer from any type of PF, and those commercial businesses that can provide the facility don’t really link any of their statements to hard evidence or studies and some of the reviews are questionable.

It is interesting though that your consultant and support team urge caution though….did they give any reason?

Yes, I am aware that there are a few organisations using the chambers for the treatment of MS and other diseases so perhaps the more statistics and studies from those may well enhance treatment for PF moving forward but I think we are a bit away from that just now.

Not an expert by any means so stand to be corrected from anyone with more knowledge on the subject.

Failing that we should all train as deep sea commercial divers and have oxygen on tap all the time.Dangerous work but at least we would feel great doing it!!!

take care

Scott

 

[Scott Robertson]

Hi Terri, thank you for replying and telling us a bit about you’re story.

It’s great too hear that you are able to exercise and derive benefit from doing so…it’s a very peculiar trait of this illness that we are told of the importance of keeping mobile and exercising when often the very last thing we want to do is exert ourselves. I am a firm believer in exercising and am realising more so now that the benefits equally relate too mental health fitness which is crucial in helping us move through the challenges we face.

It is also great that your circumstances allow you too work from home and I’m guessing continue to earn a wage.Unfortunately there are others with this disease who have worked in the military, law enforcement, the medical profession, heavy industry and a Miriad of other jobs which don’t cross over to working from home once we are forced to retire on grounds of I’ll health, and although I am not at the stage yet of perhaps looking for another job, I am pretty sure that wouldn’t be easy what with our particular needs and allowances.

Yes, having a support group around you is a great help and whilst I am sure we don’t ever want to burden others with our problems, it is nice knowing you can fall back on others for support when needed.

I agree with your comments about people perhaps not fully understanding about the seriousness of our illness and the peculiarities of it in our daily lives and I am definitely of the opinion that the disease is often thought of as an older persons illness..

I fully agree that we should all be kinder and more compassionate in what we do and too the people we meet….it’s something we can give freely after all.

Thanks again for posting

Scott

 

[Scott Robertson]

Hey,

I hope my post doesn’t come across as disparaging to others. regardless of age the disease is horrible, the symptoms frustrating and debilitating and the outcome poor in many cases.

Although we all share a lot of what this illness brings to us in relation to symptoms etc I do believe that at various stages in our life the priorities might be slightly different. Someone who is already retired and receiving a full pension and benefits will naturally not have the same worries that a younger person at the stage of having to give up work will have.Likewise a younger person may not necessarily have an effective support group around them yet whereas an older PF sufferer might well have established friends and family that are already supportive etc.

Maybe the UK is different from other parts of the world but my impression (rightly or wrongly) is that the disease is often classed as an older persons disease. When I see posters or look online at the various help organisations, invariably the faces shown are older, often with their family around them. In comparison television ads or magazine articles for cancer often show a wide variety of ages…it’s normal to now associate cancer with any age group.I think the Various PF organisations even despite their good intentions are still unwittingly feeding this idea that PF is an older age group illness through their media outlets and I can’t be the only younger PF sufferer to feel a bit under represented.

lots of work still needed here in the UK

I am going to get involved and do various charity challenges as a way to promote the disease and hopefully raise awareness that it can affect the younger age group too. If I can’t beat this illness and I am still mobile then I may as well try and contribute when I can.

I guess the reason behind posting was just to get a gauge from others of their experiences and perhaps the difficulties they themselves have faced.

 

 

 

[Scott Robertson]

Hi Graham,

There is a specific subheading for for all things to do with Esbriet (pirfenidone) under the forum tab, scroll down.

You would likely get people answering if you post you’re question there or may even find the information you are looking for already discussed.

you can also try doing a search and see what comes up, the search facility seems very good on this forum.

kindest regards and hope you get the answer to your question.

Scott

[Scott Robertson]

Thanks Charlene,

As a newbie it is clear from this forum alone that getting one’s head around all the info and terminology can be confusing and frustrating in equal measure so it is good to have such well thought out contents in one place.

I also want to thank you for the steady steering of this particular forum ship. Your journey is well documented here and resonates with so many others. It is too your credit that you give so much of yourself too helping others whilst going through your own journey, both highlighting the positives and negatives which is important.

My thanks from Sunny Scotland!!!
Scott

[Scott Robertson]

Thanks Colin,

it also doesn’t help that most of the symptoms can be very similar across the various illnesses and diagnosis which is why I know a proper diagnosis is so important early on.

My understanding though is that all PF regardless of type or origin is progressive, I am just not clear where that progression always leads but the very words ‘ you’re disease is progressive’ can worry people.

I also think that the difference between an IPF and an ILD PF diagnosis is at times very narrow as many ILD patients never know what cause their initial illness so in reality someone with ILD PF can also fall under the word idiopathic.

I am no expert and bow to those with far greater knowledge or personal experience than myself.

I just find the whole PF thing baffling and not all that easy to navigate.

Scott

 

 

[Scott Robertson]

Hi again Gavin,

glad you have the tech to be able to monitor you’re Stats, being able to evidence what you are saying can only be a good thing.

Your sleeping , or lack of does really sound grim. I was in the military and know what sleep deprivation does to the body and more importantly the brain, after 4 days of hardly any sleep I was reaching the stage of sleep deprivation psychosis and losing the ability to interpret reality.

Not a medical professional so can’t offer a medical opinion. I hope the NHS is in touch soon and you are able to begin the journey to feeling better. The only thing I would say is that if you can afford too, then ask your GP to refer you to a private practice and see what they say. Going private and paying for my own CT scan was the only way I knew I had PF in lungs, the NHS had said I would have to wait 20+ weeks otherwise for a scan.

Thoughts are with you and hope you get some resolution

Scott

[Scott Robertson]

Hi Gavin

whatever it is that you are going through, it sounds grim.

don’t know if you have a fitness type watch that measures oxygen levels or a pulse oximeter but I agree that if you can evidence that your oxygen levels are dropping to mid 80,s then no healthcare professional should be doing anything other than getting you into hospital. My o2 on even gentle walking goes to 87 88 but I recover from that very quickly back to around 95 once I stop exertion. I was told by my GP that if it ever went too 85 regardless of recovery rate I was too let the gp practice know or get to a and e

Anxiety in itself shouldn’t be dismissed though, going through what we do it is normal to be anxious or even have panic attacks. They can be disabling to some people.

I hope you get the treatment you need. I am in the UK also and know how slow things can be with the NHS.

again, look at a way to monitor and evidence you’re stats.

I wear a Samsung Galaxy 5 pro and use a finger pulse oximeter and between them can manage all my stats and send to the medical team I am under.

kindest

Scott