May 21, 2018 at 9:20 pm #12626
As a patient in a local support group for people living with lung diseases, I’ve really learnt a lot about others’ struggle with pulmonary fibrosis (PF). As a young adult living with PF, I have many struggles of my own, but what always surprises me after participating in this support group is how this disease impacts people differently.
There are many commonalities that we all share as patients living with PF or idiopathic PF (IPF), but there are also many differences. One of the factors that attributes to those differences can be age of the patient. The age and/or life stage a patient is in seems to impact how the disease might effect them.
As an example, one of the things I think about as a young adult living with IPF, is whether or not my disease will impact my ability to have a family of my own someday. I certainly wouldn’t say I am worried about this, as it is not my priority right now, but it does cross my mind occasionally. On the flip side of that, a common concern of some patients in the group who are older than me, is fear of being forced into retirement early due to their declining health. See how the impact(s) of this disease can vary depending on a patient’s age and/or life stage?
Since each patient’s journey with this disease is unique, I am interested in learning more about the worries or concerns of patients living with IPF at different life stages. I am only seeking this information for my personal interest, as I believe that having an awareness of this will better prepare me to help other patients in our monthly support group. As a result, I’d love it if you would take a moment to help me answer the following questions:
A) If you’re living with PF/IPF, what is your age and/or what life stage would you consider yourself in (young adulthood, middle aged, senior, etc)? Please only share what you’re comfortable and feel free to add in different life stages as they may pertain to you!
B) In this life stage: what are your top two PF-related concerns? An example might be, having to disclose your disease to your adult children, or being forced into early retirement due to your health.
If you’re comfortable sharing, I’d really appreciate hearing from you.
May 23, 2018 at 6:43 pm #12689
You always pose thought-provoking topics.
I was diagnosed with Hypersensitivity Pneumonitis in 2007 when I was on a contract in Australia. It was misdiagnosed as bronchitis for several months until a lung biopsy was done. Being in the hospital in a foreign country with no family around can be kind of scary. HP is different from other categories of ILD, in that it’s supposed to go away when you remove yourself from the allergens. But, for me, the fibrosis damage was done by the time of detection. My FVC was in the 40% range and has remain there for 11 years.
So my condition has spanned several life stages from the peak of my career into retirement. I went on oxygen 24/7 in 2012 and retired in 2015. Until I went on oxygen, no one knew anything was wrong. But I was more tired, so I missed more days at work than before.
When I went on oxygen, I had to face up to it. My client was great. They could have let me go, but they renewed my contract every year until I retired. Initially, I was using tanks and commuting on the subway at rush hour. Not fun. I felt freedom when I got my POC. I was working in DC where they had a transportation service for handicapped people. By qualifying, I didn’t have to take the subway anymore. My client let me telecommute, so that was an incredible relief.
With that background, here’s my thoughts on your question. The worse part was being misdiagnosed and barely able to breathe for 3 months. That really freaked out the people on my project. Australia’s medical system didn’t know how to deal with people who aren’t part of their social medical system. My boss finally got me to a pulmonologist who put me in the hospital immediately. But when I got out of the hospital, without oxygen, I could pretty much hide it and continue on as if nothing had happened.
In 20012, I had a reoccurrence and had to go on oxygen. Once that happened, I had to discuss my condition with my client. My project team members were great, but I think they were embarrassed having me walk around with a hose hanging out my nose. I participated in more meetings via telecommunications. By the time I retired, though, almost all meetings were that way for everyone, so no big deal anymore.
The toughest stage has been retirement. I can no longer travel. I expected to go to the 3 states I haven’t been to. I have 3 timeshares that I can’t use and can’t sell. I thought I’d be that grandma who took care of the kids. No way that’s happening. Now my sons are taking me to see assisted living places. NO WAY!!! I’m not ready for that. I have to take a wheelchair to go anywhere. I need a driver. I’ve lost my independence.
Yet, I live alone and take care of myself. Since I can’t go out on my own, I use Safeway.com, Instacart and Doordash to get food delivered. Cooking is hard because I can’t stand up for very long. I had a woman come in to fix a lot of meals I like and froze them for a month’s worth of food. So you can find ways to cope.
But this has only happened in 2018. I’ve had 11 really good years, coping with this condition on my terms. But, I think my condition isn’t as bad as some others because I have HP, which is suppose to go away. It just didn’t for me.
looking forward to hearing others’ stories.
May 24, 2018 at 8:03 pm #12718
Thank you so much for your kind words and for sharing such a thorough and thoughtful post. I am glad to hear that the topics I share here are thought-provoking, and hopefully helpful as well. I’m not always sure what to post, but hope that if I am thinking about it, maybe others are too. If there is ever a topic you’re wondering about, feel free to post to generate responses or let me know and I can post as well. In the meantime, I am thankful for your response to posts I make 🙂
Unfortunately I can relate to how scary being in a hospital in a foreign country without family is. I also was hospitalized in Australia, and am very sorry to hear that this was also your experience. Did you ever find out the cause of HP for you? Curious to hear more about this, as I wasn’t familiar with this type of ILD but sad to learn it is what progressed into the fibrosis for you.
It is remarkable, though I am glad, that your FVC has remained at 40% over so many years. Does it fluctuate when you’re ill at all, or during extreme temperature fluctuations? If it does, I guess it means that it comes back up to 40% if that is where it has been for 11 years.
Thank you for sharing your experience with working as well, especially once you started oxygen to your retirement. This is starting to become worrisome for me, as I am so tired during the week that I do miss many days as well. Like you, my employer is very understanding and accommodating but sometimes I wonder just how many accommodations can be made. I use a POC as well, and actually changed careers to reduce my commute. I can only imagine how difficult it was for you to use the subway as well, plus all the germs. I am so glad there was a service that ended up coming through for you to avoid that commute and even better, that your client let you telecommute. I also do a lot of work from home, not only because I get so tired physically from my disease but I also feel mentally drained with all the processing I have to do. Did you ever struggle with mental fatigue as well, during your years of work?
I can imagine that retirement would certainly be a tough stage while living with PF, especially because the disease can obstruct you from having the retirement that you imagined. I am so sorry to hear this! PF is such a cruel disease, isn’t it? Would any close friends travel with you to your timeshare(s) or are you unable to fly? Sorry for all the questions!
Those are good resources to know about re: the meal delivery companies, and I hope others use them as well as I know cooking/meal prep can be very tiring for patients.
Thanks again for sharing your experience Terry, and I do hope that others share their experience with PF throughout the life stages as well. Take good care and wishing you nothing but the very best.
May 26, 2018 at 7:01 am #12770ChristineParticipant
Hi Terry, I commend you for your determination to stay independent. I am 72 years old and was diagnosed with IPF 2 years ago quite by accident. I had had breast cancer (very early stage) and a simple lumpectomy took care of it. The surgeon required that I followup with consults from both radiology and medical oncologists. It was seasonal allergy time for me so there was quite a lot of sniffling and coughing going on. Since many years ago I had been a smoker the medical oncologist ordered a chest Cat scan to check for cancer. They showed no cancer but he said my lungs were in terrible shape. I was referred to a pulmonologist and was shocked to find out that I had IPF and was told I qualified for supplemental oxygen! 3 months before that I had been downhill skiing. At first I was very emotional and cried fairly often at the prospect of dying “in 3-5 years”.
I resisted getting the oxygen for several months. After returning from a month long camping trip I couldn’t resist any longer. I started with 2 liters and didn’t Use it all the time. I am now at 8 L 24/7. Even this isn’t enough for many things like walking uphill or stairs. Fortunately I have a wonderful husband who does so much for me. I still do as much as I can I just have to bring plenty of O2 with me. I go shopping and out with friends and I belong to an art league and take art classes. I use to go to the gym 3 times a week and travel a lot. I still exercise at home to try to stay in good physical shape. I have a treadmill, mini cycle, and free weights. I have to use much more O2 while exercising. One pulmonologist told me I had a 1 in 2 chance of being alive next year and a 1 in 4 chance of being alive in 2 years without a lung transplant. Fortunately, after having been turned down by 2 hospitals I have finally been listed for a transplant. All the testing has revealed I am in otherwise good shape and my goal is to stay that way until my number comes up for new to me lungs! Admittedly it is harder to do requiring more O2 to do everything. I try to keep my spirits up and look for humor in as much as possible.
I am now hopeful that I will live long enough to see my oldest grandson graduate from high school. He’s currently a freshman.
I think keeping a positive attitude is the best coping method . I don’t give up anything without trying first.
No matter what stage of life you are in, this is a cruel disease. I am especially sorry for young people whose life is greatly affected by ILD.
May 27, 2018 at 8:26 pm #12776
I know your reply was to Terry and commending him on his determination to stay independent, I also commend Terry for this! I’d also like to commend you too. Being diagnosed with IPF is absolutely shocking, terrifying and confusing and I cannot imagine how you felt when IPF suddenly appeared in your life during a routine CT scan to check for other things. And, to have to use supplemental oxygen right away when you’d just been skiing… that must have felt like a blow to the stomach, for sure. Kudos to you for continuing to do so much and congratulations on being listed for a lung transplant! I thought it was you who’d mentioned your listing in the past, so I will say my prayers for you that lungs come soon! Your story has inspired me Christine, thank you for sharing!! 🙂
May 27, 2018 at 9:17 pm #12784
You Go Girl!!!!!
In 2012 my doctor said I had about 2 years if I didn’t get a lung transplant. I didn’t qualify for a transplant primarily because I’m obese and didn’t qualify for weight loss surgery because I have an esophagus problem. That problem also contributed to the lung issues. They said that if it wasn’t fixed, the PF would probably return in the new lungs. What’s the chance of getting two incurable disorders <g>?
Guess what??!?! I’m still here. Two of my grandkids were born after I was told I was heading towards terminal. I continued a successful career that not many other women had at my age. I went on an Alaska cruise, with oxygen. I’ve driven myself up to Seattle to see my son and other grandaughter. So I did a lot for a terminally ill person.
But now it has all caught up with me (see my other response to Charlene). But knowing how much worse others have it, I’m trying not to complain. Much.
May 28, 2018 at 8:08 pm #12794
Thank you for being an inspiration Terry! I loved this story of all the things you did when being considered a ‘terminally ill’ person. Kudos to you for keeping going, and I’m sending many good thoughts, prayers and wishes that even though days are a bit tougher for you now, that you’re still finding joy in quieter days.
May 27, 2018 at 8:59 pm #12781
To your questions:
“Did you ever find out the cause of HP for you? Curious to hear more about this, as I wasn’t familiar with this type of ILD but sad to learn it is what progressed into the fibrosis for you.”
When I was diagnosed, there wasn’t much information about HP. I’m really surprised at how much is now known about it. Originally it was Farmers Lung, Bird Lovers Lung and Spa Lung. The re-occurring theme is moisture or allergens. My VATS showed an unknown organic agent. Now there are probably 40-50 known triggers. I remember watching an episode of Who Wants to Be a Millionaire where the question was about a clarinet player who got it from the reed that he didn’t change or clean. Who would expect to see the words Hypersensitivity Pneumonitis on Millionaire? According to the news, a teenage girl got it from vaping. Now there are blood tests that attempt to determine the trigger. I was negative for all of them. But, I think it good that it can be diagnosed sometimes without a lung biopsy.
We are pretty sure that the HVAC system at my office played some role. Turns out that about 20 other people started having respiratory problems after I came back to the US. When my team switched places with another team, that new team started getting sick. Now HP is considered to be an occupational disease.
There is a facebook group for people with HP. They are putting together a website now specifically to get information about HP out there.
“It is remarkable, though I am glad, that your FVC has remained at 40% over so many years. Does it fluctuate when you’re ill at all, or during extreme temperature fluctuations?”
Amazingly, I have not been sick with a cold of flu since being diagnosed. Considering that I had chronic bronchitis as a kid, that I haven’t been sick is pretty incredible. My FVC did drop into the 30s when I was living in LA. Went back up to the 40s when I moved to Northern California. Guess the air quality is really bad in LA.
“Would any close friends travel with you to your timeshare(s) or are you unable to fly?”
I used to fly between LA and DC all the time, with my POC. But now that I’m on oxygen tanks again, I can’t fly. It would be too tiring anyway. I went to lunch and then did some shopping last Monday. I’ve pretty much been sleeping since then. I used to be able to get around on my own with the my POC, but now I’ve exceeded its maximum pulse rate. Before, I would take the POC out of the backpack I carried it in on my walker, put the POC in my car, take off the oxygen, walk to the back of my car to put the walker in (without any oxygen on), put my walker into the car, walk back to the front of my car and put the oxygen back on. Then reverse the process once I got to wherever I was headed. Can’t be off the oxygen for that long now and can’t walk around using the walker. Now I’m using a wheelchair if I have to go anywhere. That means I have to use a driver. At $50 a trip, I can’t afford going out too much anymore.
But, as I said before, I always knew this day would come. I’m pretty happy reading books, watching TV and pursuing my fiber arts (spinning yarn, knitting or crocheting, needlepoint). There are so many people who have it worse than I do.
May 28, 2018 at 8:07 pm #12793
Thanks so much for getting back to me and closing the loop on some of my questions! Sorry for all the questions, but I do appreciate the time you’ve taken to reply 🙂
Oh okay yes, I’ve heard people refer to “bird lovers lung”. I don’t know if that is a widespread term anymore but I certainly do recall hearing it, likely in and amongst the support group members I am surrounded with once per week. I didn’t know that people were referring to HP though, maybe some people in my group have it as well? Was the teenager who got HP from vaping, a story in the news just recently? If so, I read about that and didn’t realize it was HP that she got. Does it coincide with ‘wet lung’ as well, which I read a story about a teenage girl getting wet lung after vaping only 3 times but that might be something different. Sad for these kids who pick up on these habits, not being educated about the detrimental side effects they can have!
I’m glad you didn’t need a lung biopsy to confirm it as well! I’ve not heard many good things about this procedure from other members of both this forum and our Facebook page….
Wow, that is horrible about it being a work place cause potentially. Has your work been made known of the trend of people getting lung diseases? Hopefully they changed the HVAC system right away so further exposure risk has stopped. I couldn’t imagine being an employer and finding that out, even though I know there technically isn’t proof (by the sounds of it?)… the trends of illness sound awfully suspicious. I’m really sorry this was your experience!
That makes sense about the poorer air quality in LA! Smog, pollution, etc. would likely contribute to a decrease in FVC. Wow, amazing you haven’t been sick since you diagnosis. That is great news! I’ll keep my fingers crossed that it remains this way for you Terry.
Your process of getting the oxygen in/out of the car when you go somewhere sounds very similar to me on my ‘bad days’ now. It’s hard to keep the oxygen on and hold onto it while loading the car (ie. putting the 02 trolley in) then walking back across the vehicle with the oxygen on. I also usually set my POC on the seat and then walk around and put the oxygen back in. On really humid days though (like this week), it is hard for me to be off the oxygen even that long. Certainly makes it tough to go anywhere, like you’ve mentioned. You’re pretty amazing Terry; I am so glad you’re finding some joy in your at-home, quiet crafts and activities. I thoroughly enjoy this as well, and being “forced” back into picking up some of those quieter hobbies has truly been a gift to me since my IPF diagnosis. They bring me so much joy, and I am glad your hobbies do the same for you!
Take care and I hope you’re keeping well.
May 26, 2018 at 2:48 pm #12771Cliff ClearyParticipant
Firstly let me say that I marvel how you put so much into these forums and I admire how you are coping with this horrible disease at such a young age.
I’m 63 and was diagnosed in Sept 2015, that was after being misdiagnosed for a number of years. I have been struggling with chronic pain and depression since 2006 due to injuries from a car accident.
The two main issues for me has been missing out on doing more with my children as everything has just been to hard, my stepdaughter 26, son 19 and the youngest daughter 15 have missed out on a lot of things growing up, because dad was always not well or to tired etc.
The other issue is nit being able to work or do everyday chores and always having to rely on someone else, fortunately I have had my own business and been able to potter around at my own leisure but it’s still very difficult. All the thins I could be doing if I wasn’t so sick and tired.
May 27, 2018 at 8:33 pm #12777
It’s great to hear from you, I’ve been wondering how you’re doing. Thank you so much for reaching out, and for your kind words! I always love hearing from people on these forums, and it has been so beneficial for me to be the ‘moderator’ of this site. I am getting so much out of it, and learning so much from the generous people on here willing to share their thoughts, stories and experiences with me. I really appreciate your sentiments, thank you 🙂
So sorry to hear about your long-term misdiagnosis Cliff. May I ask what they thought you had, instead of IPF? Oftentimes I hear patients are misdiagnosed with the things like asthma (being most common) or like a chronic bronchitis. I can’t imagine the frustration that comes from not only living with IPF, but also with chronic pain and the depression (hand-in-hand I’m sure) from a car wreck on top of that. I was in a car accident in December (not a major one) and still feel the impact of it, plus the emotional impact so I hope you’re gentle on yourself when dealing with those things on top of IPF.
Those two things (being with your children and having to rely on others) being robbed from you due to IPF just reminds me how cruel this disease is, and I’m so sorry this has been your experience. It’s not fair, and I know how hard it is relying on others and asking for help with tasks you’d otherwise be able to do before your diagnosis. I struggle with this too, and can only hope that someday I can return the favor to someone who needs me, for something else, as I wish no one had to deal with IPF.
Hang in there Cliff, and feel free to connect any time. You’re among friends here who truly “get it”.
May 28, 2018 at 8:13 pm #12795
Thanks for getting back to me and answering all my questions, I appreciate it. Sorry to hear of 5+ years of misdiagnosis’ between allergies and emphysema. That must have been so frustrating for you! Did any of the treatments you received for these things give you any relief? Was there some comfort at least in your diagnosis, because there was finally an answer that made sense? People ask me this all the time, and I used to not like it because I’d think… “of course, I wasn’t relieved when I found out I had IPF” but I get what they mean by asking. In a way, I was kind of relieved because at least I had some answers now… and I wasn’t crazy, like I originally thought. I thought the SOB was actually in my head or due to anxiety. The months leading up to diagnosis were quite tough on me emotionally, as I didn’t know what was going on …
I’m so glad to hear of your doctor’s commitment to researching your symptoms and finding out the cause and thus, subsequent treatment for it. Do you still have to do anything for the management of the Anca Vasculitis? Is it ongoing monitoring then, it sounds like? Hm, I wonder if there is any literature linking the AV to the IPF anywhere. Hopefully it is manageable now though and you’re on the mend, and feeling well.
Thanks again for getting back to me!
May 28, 2018 at 5:07 am #12790Cliff ClearyParticipant
I was first diagnosed with allergies and was treated for them for about 3-4 years, then emphysema for another 2 years. Then in 2015 I was diagnosed with IPF.
Last November I was rushed to hospital and diagnosed with Anca Vasculitis and nearly died. Funnily enough the Vasculitis has similar symptoms to IPF so at the time I thought it was IPF that was going bad and that it would lead to my passing. Fortunately my GP kept researching my blood tests and found an abnormally with my kidneys.
Now the specialists are not sure how to treat me as they have not seen anyone with my two diseases together. There is even a thought that the Vasculitis has been the cause of my lung disease, it’s thought that maybe the Vasculitis has been in my body for quite some time before the episode in November.
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