• Posted by scott-robertson on July 29, 2023 at 10:27 am

    Hi everyone

    Having been diagnosed with hypersensitivity pneumonitis back in 2015, but fairly recently only been given my diagnosis of progressive fibrosing interstitial lung disease (chronic HP) I just wanted to reach out and ask how others of perhaps a younger age have found the journey they have been on and are going through. Has it been hard, difficult, frustrating or has your experience been good.

    I am a young 54 year old, have always looked after my health and have served in the military and prison service which have both required a level of robustness and mental strength in order to do the job at hand.I currently still work for the prison service but after 24 years service will be starting the ill health retirement process soon as I am just not physically able to cope despite my mind telling me too hang in there.

    My diagnosis came as a shock really, yes I had been feeling unwell and likely had struggled on well past when I should have stopped and recognised the signs but I guess the daily struggles of work, earning my pay and home life didn’t leave a lot of time for worrying about my deteriorating health.

    I live in Scotland and am under the care of the NHS and although I often have the odd grump about things, I have found my treatment to be largely positive with just a few bumps along the road.

    I am on OFEV (nintedanib) and require the use of an oxygen concentrator whilst out walking.

    I guess what I have found so hard is everything in the UK seems geared up to the older patient and I have at times struggled to believe that my consultant understands the difficulty of being a 54 year old PF sufferer and how to effectively talk to me.I asked her once how many younger patients she had and she replied not many, most of my patients are already retired and in later life.

    I found that my consultant really didn’t know how to engage fully with me or find it easy to link my conditions symptoms and prognosis to how I was experiencing life and the difficulties and worries I was and am having. Worries such as thinking about giving up work, finances, pensions was really just skirted around when it was obvious that these massive changes in my life were having a stressful impact on my wellbeing….it’s not easy for someone of my age to have too think about a whole new way of living when everything I had worked for up to now was geared to having a good retirement with my wife…..in good health preferably. Obviously being married means any impact on me is felt keenly by her too which is also difficult to come too terms with without feeling guilty.

    from really simple things like the various PF help organisations generally using images of the more mature patient, too pulmonary rehabilitation groups not being geared up fully to incorporate someone of my age, mobility and still fairly good health (other than PF) into their classes (I was once asked to come along to a group and it was explained to me that the exercises would involve lifting weights the equivalent of a tin of soup!….now don’t get me wrong, perhaps that is sufficient for some people, but it wasn’t for me and I struggled to accept my attendance at such classes.I also live in a fairly rural area with few options open to me as a PF sufferer.

    I have also started too attend a PF support group and everyone is lovely, kind and supportive….but again older with different needs and worries to me.

    I could go on but just wanted to maybe hear from others who might feel like I do that there could be more work to do in how the medical and professional field / support network see and deal with the younger patient. As we are all starting this journey we are on at different times in our lives I understand that we all have our own issues and worries but I find that the help available is geared towards the older patient who may have a completely different set of priorities and outlook to myself.

    Apologies for the length of this post, it seemed shorter in my head when I was thinking about posting than the reality lol.

    Thanks for reading and having gotten this far!

    my best wishes to all, whether 20 or 100 years old.We are all on this rollercoaster of a ride together and I am glad that this forum has so many supportive and knowledgeable individuals willing to share their own experiences in order to help others.

    Scott

    terrig replied 8 months, 2 weeks ago 4 Members · 6 Replies
  • 6 Replies
  • temple-mayo

    Member
    July 30, 2023 at 2:22 pm

    Hi Scott. I hope you get some good information from a younger person.  I am 68, diagnosed in 2021, on Ofev, but no O2 yet.  I’m in the U.S. so I am not familiar with your NHS.  I don’t know if your consultant is a nurse or a doctor or someone else.  It is great to have an experienced pulmonologist to help to understand what to expect and what the future holds.  I assume that you have checked for support groups locally and/or other sites like this.

    I think it is very important to speak with a psychologist or psychiatrist who deal with patients with serious diseases.  Additionally, have you looked into lung transplant?  I think this would be a real possibility given your age.  I have a friend, younger than me, who just celebrated a year post transplant.  He is doing well.  Just thoughts.  Good luck to you and yes, this disease sucks, but please talk to a professional.

    • scott-robertson

      Member
      July 31, 2023 at 9:29 am

      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

    Member
    July 31, 2023 at 1:16 am

    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

  • medicjess

    Member
    August 1, 2023 at 9:56 pm

    Hello, I’m 46 and was diagnosed in 2019 with IPF along with COPD and many other conditions. I’ve worked as a Medic for 20+ years and absolutely loved what I did. I found when Covid hit my dr and I agreed to stop working on an ambulance. Since then, my disease has progressively gotten worse.
    I have found a lot of issues for myself since diagnosed.

    First, the major depression that has happened and seems to be getting worse daily. Secondly, my kids are all grown with kiddos of their own and for the most part they are supportive and understanding. But, I do have family members ( parents) that are in no way supportive. Constantly having to fight and argue with them because I am at the point I can no longer work. O2 sats stay low, no energy, but mostly pain. I constantly hurt everywhere. I do what I can daily but some days are difficult.
    Lastly, just the not being able to get/have the resources for me to continue with life in general. By that, I’m talking about not having insurance, ANY medications, or even the abilities to continue being seen by my drs. That along with feeling totally useless and a “burden” to those closest to me is the hardest part for me.

  • scott-robertson

    Member
    August 2, 2023 at 12:29 pm

    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

     

    • medicjess

      Member
      August 2, 2023 at 1:12 pm

      Hello Scott,

      Thank you for replying. Glad to know I’m not alone on this chaotic roller coaster 😂. I haven’t joined any support groups yet but will definitely see what I can find. Again, thanks so much for all the information!!

  • terrig

    Member
    August 3, 2023 at 3:05 pm

    I was officially diagnosed with ILD/PF a year ago at age 59, though my pulmonologist and rheumatologist have been following my lungs since my early 50s. I have an autoimmune disorder, Sjogrens, which they think caused the ILD/PF. I’m on Cellcept and about to start OFEV. I’m currently doing pulmonary rehab at my local hospital, and it’s a great program. I do cardio and weights under the guidance of a PT and pulmonary nurses, who also provide education about sleep, nutrition, etc. I find exercise helps me deal with the mental aspects of my health issues. I use supplemental oxygen only when I exercise or go out for a walk. I also have a handicap placard, which I’m happy to use.

    I work full-time at a desk from home, which is nice. People seem surprised when I tell them I’m still working, and some friends don’t know how I do it. Most days, I am really tired, and sometimes it’s a struggle to concentrate and get through the day though my job is not terribly stressful. I do plan to retire sooner than I planned since my lifespan is now probably shorter than anticipated and I don’t want so spend whatever time I have left working.

    I have a great support system between my medical team, my husband, and online support groups. I don’t think my friends and extended family truly understand the seriousness of my disease, though when I told them my pulmonologist wants me to get on the transplant registry, they paid a little more attention!

    I am sometimes treated like an “old person.” But I think, in general, there is a lot of ageism in the United States across a lot of spectrums, be it healthcare, employment, etc. People see my gray hair and oxygen tank, and assume I’m retired or feeble. We could all stand to be more self-aware and kinder and more compassionate toward others.

    • scott-robertson

      Member
      August 3, 2023 at 5:43 pm

      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

       

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