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I’ve been told the three things that initially bring PF/IPF patients to a doctor are a cough, shortness of breath, and “I just don’t feel right.”
I was diagnosed two months ago and was put on oxygen (2L) for exertion and sleep. I started Ofev one month ago. I don’t feel awful but I don’t feel “right.” Is this my new normal? I’m always aware of my chest. I don’t have pain, but it often feels like the first stage of a chest cold. I don’t have a lot of energy, but I am 71 so that might have something to do with it.
I feel best in the morning — almost normal. I try to do my errands and exercise before 2. Then I generally watch TV or read for two or three hours. I go to bed at 9:30 and wake up at 6.
Even before I started taking Ofev, my taste buds changed. Things I used to like taste awful now. I have to force myself to eat vegetables. I have much more of a sweet tooth now. Thankfully, I haven’t had the terrible side effects others experience on Ofev, but I occasionally feel a little nauseous and/or crampy.
I seem to have more aches and pains now, but that could be unrelated and due to my age.
I’m curious how others feel. It’s hard to explain to those who don’t have the disease, especially since we don’t look any different than we did when we were well — at least not in the early to mid stages.
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Some of my symptoms existed before the Ofev so I’m not sure I can blame all of them on the drug. But it is comforting to know others experience them as well. I’m so hoping that I can remain stable for a number of years that I freak out when I start feeling anything that suggests my disease is escalating.
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Hi Cynthia,
Thanks for starting this topic – very interesting, and I’d be curious to hear what others have to say about how they “feel” as well. I agree re: the 3 things that bring most of us to the doctor, but for me I’d also had extreme fatigue to that equation. As a 28 year old who was previously active (hockey, swimming, etc) I knew the fatigue I was feeling was abnormal, though I never expected to have a fatal lung disease! I can relate to the “just not feeling right” statement and I am sure many others can as well.
Awhile back I wrote a column called What Pulmonary Fibrosis Feels Like, if interested you can read it HERE. It is hard to convey how this disease feels, but I wanted to see if my experiences were similar to others, which was the driving decision to write this column.
I can relate to the pain in the chest, or constant awareness of my surroundings to try and keep my lungs safe. This is exhausting – watching for smokers, those who might be coughing or otherwise sick. I think it is part of my new norm unfortunately, along with pain in my upper back muscles due to the cough. Thankfully massage helps relieve this for me!
I am also always curious about how others feel physically with this disease. Let me know if you can relate to anything I wrote in that column, or if others can. Take good care.
It is a long weekend here in Canada so I am just about to pack up (well, not me because I can’t do this myself anymore) and head to the cottage.
Kind regards,
Charlene.-
I’d forgotten you started a similar column a few months ago. I just went back to it and many of the comments resonated with me. Yes, I did (and still do) have fatigue, but again I chalked that up to my age. Fatigue would be far more noticeable at 28. Fortunately I’m virtually retired now so I can rest for a few hours in the afternoon.
Have a great weekend at your cabin. Does your Simply Go serve all your oxygen needs for a getaway like that?
BTW, this is the first summer since my diagnosis, and it’s clear I feel much better when the days are less hot and humid. I was just miserable for a few days last week.
Best, Cynthia
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Hi Cynthia,
No problem – I’m coming up to my 3rd year anniversary with PF News so I’ve written a lot of different columns on various topics 😉 Glad you are retired and can rest in the afternoons, that must be so helpful! The time is not far away where I have to discuss part-time work, as my body and brain are so tired by mid-afternoon. Truth be told, I’m not sure I am super effective/productive towards the end of the work day anyways.
The cottage getaway weekend was great, but goodness I tire out quickly up there. I bring my SimplyGo machine with me and lug it around (usually my cousins carry it for me :)) and plug it in as needed. I also usually bring my D tank up with me as a back up, just in case. I’ve named my concentrator and my little tank, so we always joke that they are my “buddies” and accompany me everywhere. I don’t always need it, but certainly did last week when it was really hot and humid.
Hope this week is a bit more manageable for you in terms of the weather, I am hoping a thunderstorm here in Ontario breaks the humidity today but so far…. nothing!
Hang in there,
Charlene.
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I’m not on Ofev, so can’t answer for what symptoms that might cause, but I’ve recently deteriorated after nearly 10 years of living with the IPF diagnosis without many symptoms, though given where I am now, I’d say the last 2-3 years have seen some gradual changes. My diagnosis was incidental to a CT scan for other reasons.
I’ve only been prescribed supplemental oxygen for exertion (was delivered on Thursday), but still adapting to the newness of it. I can relate both to your symptoms and what Charlene described in her article. I’m 67 and have so many aches and pains, I sometimes feel I could be in my 80s. The pains seem to move around, including head, jaw, neck, teeth, face, hips, back, legs. The ribs are particularly problematic, with all sorts of odd “cramps” when I move at a different angle and especially when I compress my stomach bending over to tie shoes or similar – almost feels like a rib is bending over and pressing against my organs. Weird af!
My reflux seems to get worse with time and more difficult to control with meds. Can sometimes make sleeping difficult, though mostly I control it by not eating after 3pm. Almost constant headaches and tinnitus. Finding it more and more difficult to concentrate on anything for more than a short while – reading a book or anything for more than a few minutes has become almost impossible. Can’t even concentrate on TV shows long enough to maintain interest, even series I used to love.
Have given up my beloved solitary walking for the past month or so because I don’t feel secure enough to do it and don’t have a suitable portable oxygen system yet, though hopefully will sort that out this week. Trying to do more weight training at home now that I have my oxygen, though even with oxygen yesterday, the consequent coughing was debilitating.
I feel like my world has shrunk significantly, if that makes sense.
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Thank you for your reply Jill and for sharing your thoughts. So sorry to hear of your recent deterioration – that is gut-wrenching and disheartening, isn’t it? Due to various illnesses, things like RSV etc I sometimes have a decreased PFT and even going down a few percentages in the different categories of the lung function is enough to upset me and throw my day off. Any reason you can attribute to the increase in symptoms that you can think of?
Sorry to hear about the pain too, I never would have guessed the different pains that would come from a lung disease. Seems so unfair, doesn’t it? Have you tried massage for relief of the pain at all? I find it so relaxing and it helps me with sleep too!
hang in there, the “shrunken world” statement really resonates with me. I’ve really had to shift what my interests/hobbies are, that is for sure. Sometimes I miss my old life, but I try not to dwell on it if I can help it… though, way easier said than done I know. Feel free to write anytime Jill, while we may not be always able to help, sometimes it is nice just to know others understand.
Kindest regards,
Charlene. -
Jill, I’m wondering if the supplemental oxygen might resolve some of your issues, like the headaches. Be sure to get an oxymeter and check your oxygen throughout the day. I was prescribed it for exertion, which I initially thought would be a long walk or yard work, but I’m finding I need it even when puttering around the house, and certainly when carrying stuff (like laundry baskets) up and down stairs. And usually if it’s prescribed for exertion it’s also prescribed for sleep. There’s no downside to using oxygen as much as you need it, and there’s a lot of upside.
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Thank you so much for asking this question, I only joined yesterday after a diagnosis of LF a week ago. I am in my late 70`s and was given the diagnosis over the phone after having a routine CT scan for lung nodules and a recent unexpected diagnosis of bronchiectasis following a chest infection, my husband died of cancer eighteen months ago, 6 weeks after diagnosis, and I feel as though I have been hit with a hammer to say the least, especially reading all the comments. I was a registered nurse and have cared for many patients with various lung diseases, including LF and tuberculosis. I have a son who lives 300 miles away and a daughter who lives 8 miles away, neither have families and my daughter is not in good health herself. Those are my only family. At the moment I get extremely tired, have to plan my day, e.g. rest housework rest etc. each day and as I also have osteoarthritis in most of my joints housework is becoming a bit of a problem. I can walk for short distances, but not walk and talk if with a friend. Am deeply apprehensive about the future, my consultant has said that in 8 years time ” You will most likely have a bit of a problem” but still feel scared and apprehensive at what the future may hold. Am glad I found this forum and thank you to everyone, you all seem so kind supportive and helpful. Christine.
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Hi Pearl: While pouring my heart out on the ‘Living Our Lives’ forum, @wendy-dirks, was kind enough to turn me on to www DOT self-compassion DOT org — specifically the Self-Compassion Guided Meditations and Exercises. That night I listened to two Guided Meditation recordings and then another two the next day. Very helpful. You may want to check out the website.
I am scared and apprehensive about the future too. When my pulmonolgist asked how are you feeling. I said, depressed and scared. She said you should, which frankly made me feel worse, but then she said I must see a therapist as depression can have a negative impact on the disease, paraphrasing.
I live by myself and only have my elderly parents … who depend on me. I am there several hours everyday. There is no support group nearby, but I did find a counsel, who I will be meeting with one-on-one.
Wishing you the best.
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I can certainly understand the shrunken world as this week my car is being detailed and then sold so then I will have to rely on others to go anywhere. Even short trips to the library to sit and do a jigsaw will have to go.
Time to start on my list of classics I promised myself to read!
I was diagnosed almost 2 years ago but looking back had symptoms at least a year previous so it has been a gradual progression that one gets used to.
One of the hardest parts for me is that everyone says you look great and yet have no idea what we go through on a daily basis. It is so hard to describe and they don’t see me having a bout of coughing that exhausts me. I used to feel like a person, now I feel like an experiment!
However here I am another day, Netflix or a book?
Good to hear the stories that help us get through.
Pamela Green
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Hello Pamela, I am sorry to hear of your condition. This is an awful disease we endure. It was ironic when I had PF before my transplant I was in pretty good shape and often received comments regarding this. Although many people knew about my condition others didn’t and couldn’t believe I had a terminal illness. My wish for you is to remain active and do what you can. Try to get out of the house as much as possible. Are you on supplemental oxygen? Best wishes, Mark.
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Hello Mark, Yes I am on oxygen. 2 liters at night and around 3-4 doing tasks, making the bed etc, which can take up to 40 minutes, stopping to rest as I go.
I will take your advice and get out of the house as much as possible. I will contact my senior center and see if they have a bus service that goes to the senior center and the library.
I enjoy reading your posts they are inspiring and show us just how far we can go.
Pamela Green
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Hi @jill-tanner,
I got your last post that was “flagged for moderation” but not likely due to the length and instead due to the formatting. It looked all like code, which tends to happen when we try to copy and paste something to the forums but we aren’t sure why it does that! Were you trying to copy and paste something your reply? Hmm, I’ll see if I can find out what went wrong here.
Charlene. -
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I can’t get over how the humidity affects me now. We just had three days in a row with high humidity and I felt so lousy I was afraid I was in some kind of downward spiral — coughing, short of breath, fatigue, etc. Last night the humidity disappeared and I woke up feeling 100 percent better. It was so dramatic that I’m now thinking seriously of moving to LA where my daughter lives. I currently live in RI where the humidity in the summer is awful. And the cold, dry air in the winter is tough on me, too. I believe the lung transplant program at UCLA is large and good. Does anyone have direct experience with it?
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Cynthia,
Moving to a better climate would be a great idea, but I wonder about the smog in LA and if you might want to rent for a couple seasons first? Perhaps an area convenient to LA with cleaner air (if necessary)?
I live in a mid-Atlantic, coastal state a few hours south of you and even though it’s my husband with the IPF and he’s indoors most of the time, I can hardly tolerate the humidity either. My plan is to get the heck out of here after DH gets a transplant and is stable, but since he’s not even on a list yet, that’s just a dream to help fuel me through all these new concerns and responsibilities since his diagnosis.
I had better stop complaining and get outside. It’s 82F with humidity at 40%. Seems like only the second or third day in many weeks that I may be able to work in the the yard for more than 30 minutes at a time. This is far from good-enough weather for a middle-aged woman responsible for caring for a pretty large property, to even get the weeds under control let alone everything else involved in outdoors maintenance these days.
Best,
carolyn
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Hi Carolyn,
Thanks for writing and sharing your thoughts – good idea to highlight the possibility of smog in LA. I love that city but it sure is a busy one!
Wish I could help you with the property maintenance. It is a lot of work, and usually takes me 2-3 hours longer than someone who might be able to do it without a lung disease, but I like when it is finished. I know it isn’t easy though. Hang in there, and wishing DH nothing but the best with this disease.
Hugs to you!
Charlene.
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Hi Cynthia,
I am like you and am significantly affected by the humidity. It is awful! Not only do my respiratory symptoms act up, I am also physically exhausted if I am out in the heat. UCLA has an incredible lung transplant program, and I know a few members on this forum are indeed patients there. One is post-op actually from his double lung transplant. Let me see if I can get in touch with him to see if he wants to connect about that facility. I’m sure he will, I just always want to ask ahead of sharing private details of members with others. Would this be helpful to you? If so, stay tuned!
Carolyn also raised a good point re: the smog in LA. Some people are bothered by it, others aren’t. I wasn’t when I went to LA and while the heat was very intense in temperature, the humidity was very different than what I was used to and it didn’t bother me as much. It is a different kind of heat because the city is coastal. Can you visit your daughter to see how the LA weather affects you ahead of moving? Might be worth it, although the program is very good there and the humidity is different than ours so it might be an easy move. I know flying isn’t the easiest with oxygen, but definitely possible. I’m wondering if being by the sea will help too? I am very curious to know if being oceanside in Hawaii next month helps me breathe with the salt air. Time will tell!
Hang in there and thanks for writing.
Charlene.-
Hi Charlene. Thanks for responding. Yes, the smog could be an issue, but on those days I’d just stay in my air-conditioned apartment. And probably during the hottest part of the day in the summer. But I’ve stayed with my daughter when the temps were in the 90s and it didn’t feel hot to me at all. So different without the humidity.
Yes, that would be great if you could connect me with someone who has used UCLA.
Cynthia
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Hi Kathleen,
Thanks for writing to us regarding this topic. Yes, I’ve heard the heat & humidity can really impact those of us living with IPF. Although it is interesting, I’ve heard some patients say the cold effects them more. What symptoms did you go to the urgent care center for? Better to be safe than sorry, and I hope it wasn’t anything serious.
Sincerely,
Charlene. -
Dear Charlene, I wanted to comment on how I feel, Apart of my execive over abundant of phlegm, living in a very humid and mild coast line weather seems to help my PF, moving here from western Canada very dry climate, coughfing all day long. Here seems to help a lot my day by day living.
best regards to all of you
jaime
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Hi Jaime,
Thank you so much for writing – I am always really curious to hear how others’ environment helps with their IPF or worsens it. Glad you aren’t too effected by the heat. I always imagined coastal air would be good for our lungs! Hang in there, and I hope you get some relief from the phlegm as well. I know that is so tough to deal with!
Chat with you soon,
Charlene. -
Hi, I am recently diagnosed and except for occasional shortness of breath, I feel fine. I did have an incident that scared me, however. We live at the foot of some hills and on a main drag, so we get lots of dust. I bought an air purifier and shortly after closing windows and doors, then turning it on, I felt I could barely breath….perhaps I hadn’t dusted enough…and am in the process of having everything washed down, including walls and ceilings. But it made me worry that I might have trouble flying…how portable are the small oxygen devices? Has anyone used one on a plane? I have a flight scheduled for late October…and we had thought of a short flight before then. Thanks in advance for your help.
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Hello Cynthia, it is unfortunate you are experiencing problems with air quality. I hope the washing down of the inside of your home will help you breath normally. I have flown with a portable oxygen concentrator and didn’t exhibit any problems. However, you can ask your doctor to prescribe a high altitude simulation test to better gauge your oxygen requirements while in the air. I have posted the link for you below. Thank you. Mark
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I find I freak out a little when I have bad days. I’m scared to death the disease is progressing. I’m still relatively new to this (I was just diagnosed in May) so I’m not quite sure how I’m supposed to feel. My doctor just doubled my Cellcept on Friday so maybe the fact that I’m not feeling great today is due to that. I don’t know how to describe what I feel other than I’m acutely aware of my chest and I feel slightly SOB even when I’m sitting or lying down. And I have no energy.
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Hello Cynthia, unfortunately what you are experiencing is a common theme among pf patients. The uncertainty of what this disease entails is what makes it so frightening and devastating to the patients frame of mind. Please relay your concerns to your physician as well. Thank you for sharing your story. I wish I had a panacea for this disease. Mark
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hi to every one
I have not been on for a while .I can attest to the unfortunate fact that I have the same experience.what concerns me is the speed of the symptoms progression.my next appt.is in October.it almost feels like a waste of time to go only to hear what I already know.with in the last 3 month or so I have been on oxygen , for exertion .seems everything exhausts me.taking a shower ,(brushing my teeth bring coughing spells)making the bed or helping to empty the dishwasher……..I find my self using oxy.more often.i am around 90 to 93, sitting down.any of the afore mentioned activities drops me to the high 70 s or low 80s.resting without oxy. brings me back to “normal”in about 10 minutes.with oxy.i recover in 5 min.or less.i am fatigued most of the time , have muscle aches ,some depression.my wife says a lot of being down.i am on Prozac and trazidone so its hard to tell how depressed I realy am.lol.i was diagnosed ,I think around 2016 to 2017.(had o lot of dr. appointments .and I get confused .) any way I’d say 2 years.the good news is that I seem to be “ok” with the illness.i cant stop it anyway.oh,I was on ofeve for about 12 weeks .too many problems with no promise of it working …..wow , isure wrote a lot .LOL
peter
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Hi Pete,
Nice to hear from you, thanks for writing. I hope you had a nice summer 🙂
Sorry to hear your disease keeps progressing, are there any external factors you can think of that might be accelerating it (ie. humidity, poor air quality) etc? Sometimes I have to take a look at this and see if there might be some factors contributing to when I’m feeling unwell, or if it might truly be the disease progression. Of course, the latter testifier me! I’m glad the oxygen seems to be helping with keeping your oxygen saturation higher, but I know the exhaustion is also extremely frustrating. Hang in there, and feel free to write any time!
Charlene. -
thank you for caring.
the air in the house is ok as far as i knowissues with coughing .we keep the ac on.showering causes even with the exaust fan on.were in fla.air is probebly better the in a big city.for what its worth, i just went outside to unplug my charger and put it into my shed.my oxy.went to 76.my wife is giving me hell for not taking the small tank with me.i’m sure she is right.lol i sent a message to cinthia but i maybe i messed it up.wanted to cheer her up…..anyway,
take care
pete
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I’m surprised your doctor waited so long to put you on oxygen. It sounds like you might have needed it earlier. I was put on oxygen (2L) for exertion and sleep right after the diagnosis in May. I can definitely feel the difference. Even walking around a supermarket makes me dizzy and tired if I don’t use it.
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Thanks for your reply @peter! Glad the air quality is good as far as you know, that is important. I also struggle with the steam of a shower, causes me to cough like crazy! Remember the <89 oxygen saturation can cause damage to your other organs, so please be careful …. I won’t nag any more, promise Lol. 😉
Take care,
Charlene.
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Hello to Army Pete, Cynthia and all other fellow “elderly” IPF sufferers. I’m a complete amateur on blogging. I never face book or communicate with others online. But I was just recently introduced to the PF News forum, and thought I’d jump in and give it a try. Please excuse my stumbling along.
I am 67 and was diagnosed with IPF in October of 2016, however I have no doubt that I had suffered from it for a few years by that time. I had always just attributed my shortness of breath, tiredness and general aches and pains to being old! My pulmonary doctor has terrible bedside skills and he flat out told me I probably had about 3 months to live. So the first two years of living with IPF for me was complete terror. Doctor was very forthcoming with technical details of the many tests I went through (most of which went WAY over my head in terms of understanding), but failed completely when it came to giving me any kind of assistance in terms of support. What should I expect? How do I live with this? Is there any way to judge my symptoms and estimate how much longer I may have on Earth? My poor daughter and I had to bump our way along through anything we could learn online or otherwise trying to figure out what exactly had hit me.
I was on Esbriet for about 2 1/2 years, then this past March my pulmonologist said he felt it was time to switch over to Ofev. He said it was based on my last blow test, and went on to explain in his usual technical jargon how/why that was. Again I was frightened, because there are only the two medicines currently available for IPF and, if I go on Ofev and do not get good “numbers”, what then?? Am I looking at the end?
I am rambling on here, and I apologize for that, but I wanted to share that, at least in my case, switching from Esbriet to Ofev has been a very bumpy ride. As instructed, I stopped the Esbriet, waited one week, then began the Ofev. During that week I was shocked at the many differences I felt. I suffered DEEP depression during the time I was on Esbriet, and that vanished within the first day of not taking it. I was over the moon happy for the relief from the depression. Maybe this Ofev would be great! Maybe I could live out my remaining days (however many there may be) in some semblance of joy of life! I had high hopes, but that was all squashed quite quickly since then. Started Ofev March 13th, and now pulmonary doctor has me on palliative care. Palliative care?? All I knew about that was that it means you are on the slippery slope to end-of-life.
I’ve learned a lot about palliative care and hospice care in the last few weeks and am slowly getting a fingernail grip on what my new normal will be. The side effects of Ofev (diarrhea and vomiting and general queasy stomach) are so very difficult to deal with. They can be degrading and exhausting, with frequent messy clean-ups and weakness. I’ve been concentrating on trying to manage these symptoms, eating more, eating less, earlier, later, etc. I’ve also discovered that stress and anxiety can bring on surprise symptoms. But I’m at a loss as to how one handles the fear. The fear of the unknown. I’m new with the palliative care team, so am hoping they might be able to guide me with this. Meanwhile, I’m throwing it out to you. Anybody have any insight into how to handle the fear of the end of life? I’d love to hear from you.
best wishes to all my fellow sufferers,
Annette Merrill
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Thanks for sharing that, Annette. The unpredictability of this disease scares me to death too. Did you ever look into transplantation? Can you tell me a little more about your current condition. Are you on a lot of oxygen? Are you able to care for yourself and do some socializing? I’m curious why your doctor thought you were ready for palliative care right now, although I have seen people on this site say that it shouldn’t be confused with hospice. Perhaps the palliative providers can recommend meds for anxiety and stress as well as pain.
Do stay engaged in this forum. I know it makes me feel less isolated participating in it.
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Hi Cynthia.
Yes, I went through all the instructional information provided by Cedars Sinai when I was diagnosed. My decision not to pursue a transplant was due to many factors, but primarily because of the intense recovery time and procedures required after the surgery – none of it covered by insurance – and the lifetime of anti-rejection meds and doctor appointments. Doesn’t sound like much of a life to me.
I was put on 2 liters of oxygen when I was diagnosed in 2016 (24/7) and use a portable oxygen machine when I am able to get out. I turn up my home oxygen to 3L when I’m awake and moving about, then back down to 2 for sleep. My air tubing has become a part of me.
I’m currently able to take care of myself (mostly) but do not socialize much at all. It’s just too exhausting. I am also in the process of getting IHSS (in home services) through DPSS in order to get assistance for grocery shopping, picking up prescriptions, and such things.
My next appointment with my pulmonologist is in December, when he will conduct another blow test and see how the Ofev is doing. It really boils down to one-day-at-a-time! But I guess that’s all we ever really have. 🙂
Take care of yourself!
annette
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I share your ambivalence about transplantation at my age. I’m going to see how I am after the holidays and make a decision then whether to pursue that option. I’m not sure I’d even be eligible. Right now I’m hoping the drugs I’m on will stabilize this disease. Mine is autoimmune-related and my doctor says sometimes the CellCept is able to put it in remission.
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