How to Decide When to Stop Working with Pulmonary Fibrosis.

[Rose M.]

I am retired.  I stopped working in Oct. 2014, at the age of 63.  I was a full time critical care nurse in a Cath Lab.  My last year of work was part time, as I could no longer keep up working full time, nor could I keep up with the ‘on call’ schedule.  I was always exhausted.  I had an hour commute each way to work.  It was a difficult decision as I loved my job.  Retiring also made for a financial hardship for my husband and I.

I was diagnosed with IPF in 2013.  It was found on a routine chest x-ray for a physical.  My primary never notified me.  I found out 5 months later in an appointment with my pulmonary doctor who followed me for my sleep apnea.  I do not know how long before May 2013 the disease started.

One of the factors in deciding whether to work was I was afraid the disease could start to progress and I wanted some retirement time to enjoy my family and grandkids.  I have been lucky and my disease has not progressed in over 5 years.  I am not on any medication, not on oxygen, and I use a pulse oximeter to keep tract of my oxygen level.  My baseline pulse ox is 92-94%.  I live at an altitude of 4100 feet and many activities cause me shortness of breath, but I recover quickly.

[John Penn]

I was diagnosed in October of 2017.  I continued to work until February of 2020 at age 65.   Though I am still fairly active stamina was getting worse as was my cough having to use supplemental oxygen occasionally. Without knowing if I would face a rapid decline or any exacerbation my decision to retire was based on spending quality time with my wife and family and reducing any work induced stress.

[Charlene Marshall]

Hi Rose,

Welcome again to the PF forums and thanks so much for writing, to share a bit about your experience regarding this topic. It is such a hard one for me right now, as I am far from the age of retirement (I am 30) and love my job. With that said, I so appreciate hearing from others about this topic.

Sorry to hear about the financial hardship you endured as a result of being forced to retire from your disease. This is my greatest fear, as I have so much debt still from University and a post-graduate Masters’ Degree too. That said, like you, I am having a hard time keeping up with working full-time or I am doing so but pushing myself too much and risking my overall health I think. Your job sounds fascinating, I can only imagine how meaningful that role was to you.

That is such great news that the disease hasn’t progressed, and that your oxygen baseline is really in the 90s. I will keep my fingers crossed that this continues for you! Hope you are finding joy in your retirement with your grandkids 🙂

Feel free to reach out anytime, and thanks again for writing!
Warm regards,
Charlene.

[Claudia Sundberg]

I retired in 2014 but was not diagnosed until 2018.  However, before I got my diagnoses I went to work part time for an assisted living as a server in the dining room.  My mother had been a resident there and had passed away and I really missed the residents there.  So far I have been able to work with only minor fatigue although when I have needed to be out for the lung biopsy I had to prove to corporate that I could do the job.  I even had to do that when I sprained my ankle!  I need to keep myself busy so I don’t have too much time to dwell on the IPF and it puts into perspective for me that there are people that are worse off than I am.   I am on Esbriet and have been able to manage the side effects quite well.  I’m hoping to keep working for some time.

[Charlene Marshall]

Hi Claudia,

Thanks so much for writing and contributing to this topic thread. As always, it is nice to hear from you!

Glad you’re able to still do some things that you love in terms of part-time work, it must be meaningful for you to still be part of the community where your Mom was. I will keep my fingers crossed that you’re also able to continue working; it sure does keep our mind busy and off of having IPF. Sounds like it is a great thing you’re still able to do! Thanks for sharing.

Warm regards,
Charlene.

[Nan]

Hi Charlene, I have decided that for the next 2 weeks at least, I am not going to work. I have reduced a few duties at work recently but I have a very stressful, demanding job. My sats are all over the place from 70s with activity 90s at rest. My resting heart rate is climbing at quite high. I watched a video from the OFF summit yesterday and a panel of docs was saying how dangerous constant fluctuations in sat and high resting heart rate are. Increase risk of PAH. This brought a big reality to me and I decided at least until seen at ILD clinic and get oxygen I am taking time off. This has been a hard decision but I feel at peace with it.

[eichhoma]

Hi Nan,

Can you share a little more about what the OFF Summit is and how I can get access to any research on fluctuating O2 levels and high HR? Thanks in advance and best of luck to you!

[Charlene Marshall]

Hi Nan,

Proud of you – this is such a hard decision, and one I haven’t had the courage to face yet. Unfortunately this latest illness/setback made the decision for me temporarily but I’m glad you made it for yourself, things feel a bit more in control that way. The PFF Summit presentations… a few of them actually… did highlight the importance of doing what we can as patients to eliminate the saturation fluctuations, so this was a good decision. Keep me posted on the ILD clinic appointment in Toronto, not long now. I’m glad it isn’t this weekend, stay safe in this brutal, ‘catastrophic’ ice storm they’re calling for us this weekend.
Talk to you soon,
Char.

[Heather Bruce]

I am struggling at the moment with working.  I am on oxygen all the time apart from sleeping and constantly checking the battery power on my POC,  I am 62 and would not get any wages other than sick pay until I retire (that’s a laugh cos statistically I won’t be here to get it) but I have been in touch with citizens advice on how to apply for disability payments but they aren’t too sure either.  Anyone able to give advice on if it is possible to get with having IPF and COPD and Emphysema.  Thank in advance.
ps I was widowed at 53 and was too young to be a widow and they stopped giving widows allowance so I don’t have my husbands wage either.

[Charlene Marshall]

Hi Heather,

Thanks for writing and contributing to this thread, it’s so hard to work with 02 and manage this disease! If you use the search function of these forums (right hand side of the main page) and type in the keywords you’re looking for, such as “disability” or “payments” some threads may come up with the information you’re seeking. Just an idea for you 🙂
Goodluck,
Char.

[Heather Bruce]

Thanks Charlene

[Donald Salzberg MD]

Hi Heather & Charlene

I first want to thank Charlene for your never ending insight on this disease. The topic of whether to continue working was so difficult. I had A super busy & successful & stressful solo Ophthalmology practice and for 35 years. I missed 2 days in 35 years from illness (I took a ton of vacations!!). I so loved my profession and my blessings of helping others. Then in 2017 all of a sudden I was getting daily bouts of severe fatigue, brain fog, palpitations, aching but no breathing issues I was aware of. I thought like many physicians I was “burnt out!”  Six months later I was told I have fibrosis and 4 months later (lung biopsy) I had the diagnosis of IPF. So I agonized (at age 63) as to let the practice go or keep going. I did well with OFEV but 6 months before Covid hit I realized how badly stress was slowly killing me. I thrived on stress for decades but now it made me ill. I started to look at retirement as I inherently knew the stress kept forcing me to cancel many patients appointments and surgeries. The day Covid restrictions came about, I knew I had done my last surgery and saw my last patient. Covid + IPF was the equation that liberated me. In two plus years since I retired, my health and mental being has improved greatly. Even part time is not in the cards. I feel fortunate to be able to have a life again and have time to reflect. I also feel blessed that (so far anyway) my IPF is stable which to some extent credit my ability to relax when I need to. Good luck to everyone.

[Heather Bruce]

Thank you Donald

[Charlene Marshall]

So nice to hear from you, Don! Thanks for writing and contributing to this important but difficult thread. I really appreciate hearing the perspective you now have on your stressful practice and your decision to stop working, especially with it being in hindsight and having an opportunity to reflect. I know many others will also appreciate this as well.

Take good care and keep in touch! Your insight on these forums is deeply appreciated.
Char.

[Jeff Taylor-Jackson]

Hi Charlene,

I am 62, and still working full-time. I am a chartered electronics design engineer. I work from home and my employer has bent over backwards to help me to continue work. I dont want to go back in the office. It has advantages and disadvantages to WFH, when my designs are being tested or qualified, I dont get hands on to fix or chase problems. However I am keeping myself out of the way of Covid and I therefore dont annoy anyone in the office with my coughing. I can easily sit at my desk and design stuff on a computer, so its not a manual job where I am walking around a factory floor or a builing site or similar. So I am lucky I can carry on, keep earning a few bucks and hopefully carry on putting into the pension pot.

I have not got to the point of deciding to stop.

Regards

Jeff.

[Charlene Marshall]

Hi Jeff,

Thanks for writing and contributing to this topic thread. Wonderful to hear your work from home situation has been conducive to you being able to continue working. That is great and I’m glad you haven’t been faced with the decision whether or not to stop working. I am lucky as well and have a very flexible workplace, and am primarily still working from home which I enjoy.

Take care 🙂
Char.

[Rhonda Greve]

I resigned from my position a few weeks ago.  My disease hit me pretty hard and fast.  In Oct 2021 (age 60), I was scuba diving.  In Jan 2022, I was on 24/7 oxygen.  In March, I took a 90 day leave because I couldn’t keep up with working 60 hours along with multiple doctor appointments every week.  I found after the 90 days that I was in worse shape than when I started.  So, I had to turn in my notice.  It wouldn’t have been fair to my employer to attempt to stay on since I could not have performed at the level required for my position. That was the decision point for me.  So now, I have to figure out what is the new normal for me.

 

 

[Charlene Marshall]

Thinking of you Rhonda as you navigate the next stage and figure out what is your new normal. Certainly not an easy task. Thanks for sharing your story and know that we’re here for you.

Take care,
Char.

[Virginia Currie]

Hello, Charlene, this topic is so close to my heart.  I’m a cardiac nurse. I am a nurse for 28 years.  Prior to that I was a pharmaceutical sales rep from Manila and here in the USA. I decided to shift to nursing because it was a wonderful career that I can perform until retirement.  In 2018, I was diagnosed with ILD.  Only last year, after a lung biopsy my life fell apart.  The lung biopsy enabled my health care providers to diagnose what type it was.  It was chronic hypersensitivity pneumonitis.  However, the lung biopsy caused a severe left lower lobe flare up.  I was never the same.  I was always short of breath. I was off work for 6 months last year.  I went back to work last August and forced myself to work because of financial reasons.  This year, my pulmonologist prescribed Ofev which I found out costs a lot ($11,000 per month). Luckily, my insurance paid for it and also was subsidized by the manufacturer.  Luckily no diarrhea experienced from Ofev which was my biggest fear.  I’m struggling with shortness of breath, cough, allergic rhinitis, GERD, and wheezing everyday which was relieved by nebulizers, antihistamine, and cough suppressants.   I was in a way begging to stay at work until 65 for Medicare.  It was a hell of an ordeal.  My mind is strong but my body is falling apart.  I enjoy being a night shift nurse.  I have great co nurses and assistants.  They are ver compassionate.  I am not afraid to die. I just want it sooner so my agony will end.  Retirement is scary. I am not ready for it.  I always tell myself that there are worst people than me and some of them are my patients. Prayers keeps me hopeful and trustful of the unforeseen.  So help me, God. 

 

 

[Charlene Marshall]

@vmcurrie62

Hi Virginia,

Thank you for taking the time to write and contribute your thoughts to this important thread. I remember your story of being a cardiac nurse, and the difficulties you’ve faced in your profession following this cruel diagnosis. I’m so glad first of all that you aren’t experiencing any side effects of Ofev, that is wonderful news and hopefully the insurance continues to cover the astronomical cost of this medication. I’m also glad you have wonderful coworkers and assistants that hopefully allow you to work a bit longer on the night shifts. Praying for you and I appreciate you taking the time to write, I know many others will resonate with your experience. Thank you for what you do as well – nurses are (of course) dear to my heart!
Char.

[Donald Salzberg MD]

Hello

First of all I want to recognize Charlene for all you do for all of us. As a physician I spent 35+ years dedicated to helping as many people I could and at some point it became clear that I needed to listen to the tenet       “…Doctor heal thyself….”  Many docs (60%) are burnt out, depressed, over-worked and that stress makes this disease (and other auto-immune diseases) worse. Life is stressful anyway but ⬇️ stress yields ⬇️ Symptoms.
I ask how many out there get an episodic array of symptoms that come out of nowhere (fatigue; achy; foggy; palpitations; abnormal smells; cough; etc)???? Anyone with hoarseness associated with mucous?

Rhonda—I feel your pain and you will find that new normal. I’m still playing with it. Hard to give up what you love and Are good at. I loved scuba diving too. I was snorkeling in Mexico a month ago and it was effortless and almost as satisfying.
Jeff I also get what you are going through. Happy for you that you still have some income. Be well. Be kind to yourself!!

Don Salzberg

[Joseph Turner]

Hello everyone.  I am new to the forum.  I was diagnosed with Interstitial Lung Disease at the end of 2021.  A few weeks ago my pulmonologist confirmed that I have idiopathic lung fibrosis.  I am 64 years old and still working full-time although some weeks I only work 3-4 days.  My wife and I pretty much live week to week.  I wanted to continue working til I was 65 which will be in July.  I am very much concerned about continuing to work while dealing with this disease.  I am sluggish all the time, have brain fog etc.  I also get out of breathe at work though I do not walk a lot.  There is a lot of dust in my work environment.  I have not done much research on SSI disability benefits.  Although I know it’s our decision I would appreciate any information or thoughts.

[Virginia Currie]

this is a follow up of what I sent to you before.  I am now on disability due to a worsening of  my condition.  I stopped working since end of July and now my life is so difficult to deal with.  I sleep late and wake up late. When I walk even with oxygen, I become so short of breath.  I’m still taking Ofev but the symptoms of this disease hasn’t changed.  I wish Ofev could minimize the shortness of breath so my life may be bearable, I am able to cope with belief in Jesus Christ.  My two lovable  doggies keep me company day in and day out.  I am not able to walk them anymore.  I have. I thing to hope for but to just live each day at a time.

[Kathleen Ryan]

Hi everyone.  I was diagnosed in 2019 and after having covid in 2020, I tried to resume working as a online teacher, but it wasn’t possible.  I was missing classes, and this disease is so unpredictable that it wasn’t fair to my students. I miss it so much!  I went on disability in 2020, and it’s depressing.  I try to keep busy, but as everyone knows,  there’s a day to day battle to keep spirits up and smile

[Jeff Taylor-Jackson]

Hi all,

I was diagnosed April 2021. I am now 62 years old.

I am a chartered Electronics engineer. I have a fantastic employer who recognises my condition and is fully supportive.

My everyday work was a design based, desk based job, until I have any production, testing or qualification activities to do, meaning I run around the shop floor sorting things hands on or off site testing and qualifying the product.

I dont get involved in the testing or qualification anymore as I am now 100% Working from Home. I have been for the past 20 months.

I just cant risk Covid or getting exhausted running around at work. (and coughing all day long)

As for giving up, it has crossed my mind many times. Right now I am not that close to retirement that I can afford to do that, and for the most part sitting at my desk at home, takes my mind off of IPF.

I can drag myself out of bed in the morning and walk across the hallway to work, so I am lucky.

So I guess my long winded answer to the question is this: it must be a personal decision based on your circumstances and how you feel, not anyone elses opinion.

Whatever you decide you have my thoughts and prayers.

Jeff in England.

[Jerrold Thomas]

It unbelieve that I’m still alive. I have smoked millions of cigarette, well I think about half a million in 45 years. I stopped some 9 years ago. So I have severe COPD, and a lung function of about 15%. I’ve done pulmonary rehabilitation three times in the last 6 years and currently go to an exercise class every week. I need to take lots of different types of drugs, and carry a portable oxygen cylinder around with me so I don’t get too out of breath. I began healing herbs from World Rehabilitate Clinic Herbs specializes in internal and pulmonary herbal medicine and in three months I was completely cured, visit ( worldrehabilitateclinic.com ).

[Harold]

This really depends so much on your personal circumstances.  Do you love or hate your job?  How much do you need the money?  How strenuous is it?  How stressful?  Etc.  In my case my disease progressed and within about 4 years I was on the list for a transplant.  I am a lawyer, so indoor work and no heavy lifting; and I am pretty stress free in a stressful profession.  I was 69 when I was on the list.  PF continually narrowed my world, until I was on Oxygen 24/7 (although I could do without it for a short zoom) and could barely walk across a room, but I kept working.  I was working when I got the call from the hospital to report for the transplant.  I enjoy my work and found that as the world got smaller, it was the one thing I could do that I could feel good about.  None of my clients and very few of the people I dealt with knew I was ill.  This was (fortunately?) during Covid so I didn’t have to be anywhere in person.  I made plans to cut back after the transplant, but I quickly trashed them and started working again from the hospital. It has been a year and half. I work slightly less hard than I did before,  and I make sure to walk or exercise every day; but I plan to keep on working, even though I am fortunate enough to have the money to retire.  I don’t recommend this for everyone.  I write only to say this route is possible.

[Kathleen Ryan]

I was diagnosed in 2020.  At that I was teaching online.  I loved it!  Being a teacher was part of my identity.   By mid 2021 I was unable to talk with enthusiasm when teaching elementary students due to shortness of breath. I tried cutting back hours, but it seemed sleep issues increased at that same time with coughing and gerd attacks. Ultimately I wasn’t able to continue even part time.  I agree, when you’re forced to retire or go on disability, all that free time grows old very fast. I always imagined being active when I retired, but not being able to even garden has left me depressed.  I’m very grateful for my son, who makes sure I get out to do small things and gets me out of the house. In this, I’m incredibly blessed.

[Margaret]

I too loved my teaching job but had to retire at the end of the 2022 school year after being diagnosed with PF (radiation induced) five months earlier. The talking required caused SOB and frequent severe coughing. I still miss working terribly but I had no choice since I developed cough syncope (briefly passing out caused by the violent coughing.) When this happened during a PFT the monitor showed O2 levels dropped from the low 90s to 40. My pulmonologist treated the cough aggressively with oral and inhaled steroids, gabapentin and codeine. This, in addition to not speaking so much and slowing down, has really helped.

I’m fortunate that I was past retirement age and eligible for Medicare so I am better off than many. What bothered me most was that PF made the decision for me. I was able to work through cancer treatment so I hadn’t expected this. My retirement is very different from what I had planned. PF takes over your life in ways you could never imagine.

[Ellen Macko]

Retired in 2019 while working in LTC as a physical therapist. Infections were beginning that winter and needed to prevent exposure.  I had worked for 46 years in the field and lucky for me it was just before Covid.  The facility allowed  me to use POC and they serve supportive.  I do miss it and would have still worked 4 more years.

[Rocket]

I was working as an aircraft Mechanic and still playing ice hockey in 2019 at the age of 62. I also maintain my property mowing 3 plus acres of grass and any repair anything around the house such as carpentry, plumbing, painting, ECT. vehicle and equipment Maintenace and anything that need fixing I fix it. I also am a retired Air force maintenance technician with 24 years devoted to the Air Force maintaining aircraft.

I felt I was slowing down or getting older playing the sport I love to play, but I had to stop playing in 2020 when covid shut down all the ice-skating rinks and haven’t played since.

In Sept. 2019 I ask my POC about this situation and He had me take an X-ray, but I never heard back from him with the result. I found out later he moved out of the practice because the practice was failing. I changed practices after that.

Jan. 2021, I caught pneumonia and my new POC had me take an X-ray and the results detail by the Radiologist stated there was pre-existing interstitial disease in the right upper lung from a Sept. 2019 X-ray with worsening findings 1-7-2021 with IPF in both lungs. My POC referred me to a Pulmonologist for a further evaluation.

I started on Esbriet 150 mg 2 X a day and had a severe skin break out due to my skin condition with (90%) coverage of vitiligo. I was switch to ofeb 2 X a day and had to find a balance to keep the diarrheal at bay, so I found taking a 1/2 of an anti-diarrheal pill (1mg) an iron supplement with the ofeb a works well with me.

My work environment with fibrosis was hard because of the aircraft exhaust constantly blowing in the hanger and the chemical and fuel associated aircraft maintenance. I struggled working but kept going because I had to get my finances in order prior to retiring. That is the most difficult thing to do when diagnosed with fibrosis. I retired in August 2023 and since I retired, I was turned down for a lung transplant and my oxygen function has dropped a lot since the first lung function test.

I have found that when I cough a lot my blood/oxygen level is below 88% and even lower.

I have found if I try to control my cough with too many cough drops my throat starts to bleed and show up in my sputum.

I think work as long as you can and plan on a retirement plan early to exit work and retire.

I worked beyond what I should have because I did not plan when I was first diagnosed.

I think every person is different and IPF will also have a different effect on everyone.

This site is very good for people like me because we can read about others with the same disabilities and learn from their post.

Thank
you, Charlene, for maintaining this source of information.