jackie-kalina
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I was taking OFEV for a year. Was diagnosed 3 years ago. I am a woman, 82 years of age. The OFEV was destroying my life. Went to a new pulmonologist and he took me off altogether. I feel near normal. That was 2 years ago. I made the decision to have a better quality of life than constant explosive diarrhea and chronic fatigue. Have had one bout where I took Prednisone. For what it’s worth!!!!!
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Thank you for the story about your father. It was uplifting and he seemed one hell of a guy. He put up a good fight. It’s so easy to just give up. I know this is ridiculous, but it comes as such a shock when you are told your days are finite. I am 82 and was given the ‘SLAP’ about two years ago. The side effects from OFEV meds were life changing and I am no longer on them. Perhaps shorter life but better life. Thank you for being so supportive of your father. A situation we all wish we could have. He was lucky and you are commended.
Jackie -
I can not believe how long it has taken some to even get a diagnosis. I went to the doctor one day, had an ex-ray another day, they saw something, got a CT scan and was told I had IPF. I immediately went to pulmonologist and he confirmed diagnosis. I was immediately put on OFEV. I can only stand 200 mg a day. That was two years ago. No oxygen yet. My main curtailment is extreme fatigue. I HAVE to take a nap every day. I have zero motivation to do anything. I am going to a new pulmonologist this month. Mine moved to Florida. I am in California. I am going to be 82 soon. I guess no one wants to “Leave the Party.” I don’t, but I am lucky enough to live this long. The worst is yet to come and that I dread. However, two days ago, someone ran a stop sign and was aiming right for me. The thought flashed through my mind, “I am going to die.” He was young with good reflexes. He slammed on the brakes and turn his car 360 degrees and missed my car. I was very shaken. No one knows when and how we will leave this world and that incident reinforced my mantra “One Day at a Time”
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Strangely enough I just watched a biography of Jackie Collins, a women’s book author. I had never read her books or realized how famous and wealthy she was. The point of all this is she had breast cancer and never told her children the severity of the stage she was in. She went back to London to visit her children and left saying “I’ll see you at Christmas” knowing full well she was very terminal. Of course she died way before Christmas. At the time, I thought “How cruel of her.” Not giving them a “heads up” this was their final goodbye. To be able to somehow embrace and savor every last word with their mother was denying them the gravity and finality of the moment. She robbed them of that. I have experienced the loss of most all of my family including my two adult children. Oh, how I wish I could have imparted my deep love for them. At the same time, one can not not process the finality of death until it happens. Please don’t deny your children the chance to say goodbye. Just my thoughts. I’m an 81 year old and I tell those that come into my life and also ask them not to dwell on it. Much hope to you, Jackie
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I do not understand this warning to not rely on internet as it is outdated. I was diagnosed in May 2020 with IPF. The first time I saw my general doctor he told me I had a diagnosis of IPF after ex rays and Cat scan. He said the prognosis was 3-5 years. I then went to a pulmonologist who concurred with diagnosis and said 3-5 years to live. As I am in early stages, no coughing, no support of oxygen, 96% oxygen capacity, I felt the guillotine had fallen. He said, “Come back in two months!” I thought, “Two months? I want help now!”
I went to another pulmonolist and he told me the 3-5 years years diagnosis was not current with new meds.He put me on OFEV. My question, is WHY doctors are still giving out the diagnosis if 3-5 years if not current? I am now a year into diagnosis and remain stable. I “KNOW” I have something but it is not that debilitating yet. I can not take the 150mg 2x a day of OFEV. Too many side effects and not worth living like that. I take 100mg 2x a day. It’s just so confusing and scary. I know there are no “hard and fast” rules with this disease. It just seems there needs to be an update on longevity when you receive this diagnosis.
Jackie 80 year old woman -
So interesting to hear from you. I am an 80 year old woman coming up on a year without symptoms. I am very tired these days and go in for breathing tests in April. My doctor who has done biopsy (not thru lungs) said he was 80% sure I had IPF. He can hear the crackles or whatever. He was on Pulmonary research at UCLA for years and I am sure he has seen it all. He is very positive. His comment was to go on and live my life and let him do the worrying. I am afraid to ask if the 100 2x day is even helping. Please let me know what your husband finds out.
Thank you, Jackie -
These comments shore me up so much. I still vacillate from complete denial to resignation. I also dropped down to 100 mg of OFEV. That added to the quality of life and some days I feel jubilant. I figure I must have an answer and in reading your comments I realize there isn’t one. I get so tired. Still not on oxygen and my oximeter says I am mostly in the 90’s. However, some days I feel my body has been drained of blood. To raise my arm, requires effort and will. I love the good days. Is it the OFEV or the IPF? Thank you all for sharing your strength.
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I am taking OFEV 150 mg a day. Have GI problems, weak and tired. Bouts of stomach pain. In other words, I have little life. Somedays better than others. Two years ago I hiked up Machu Picchu. Oxygen levels are still in the 90’s. No coughing and can still walk. However, at 80 years old, I have to be realistic. I have asked doctor to reduce dosage to 100 mg xaday to see if that alleviates these symptoms. I am still in the mild stage and of course no one knows how long I will last without meds. I am very fortunate to live so long and so sorry for those diagnosed at a young age. I have lost both my adult children to accidents. Everyone says I am a strong woman. But this is NOT the way I want to live my life. If reducing the mg does not help. I will stop with OFEV. I may regret it as the illness gets worse. Any input?? Thanks. Jackie
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WHEN MY MOM WAS DYING OF LUNG CNCER, HOSPICE ANSWERED THESE QUESTIONS.
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Oh how I hope they come out with a drug that does not make one sick. I’ve only just started on OFEV. Hoping it gets better. I have good days (not normal like old days) and some “(this is a help?)” days. I am still in a “questioning” phase. Why me? Which is exactly what my mother said when she was diagnosed with lung cancer as she was a non-smoker.
Are you on the trial that is a drug used as an inhalant? Bypassing the digestive tract would be SO great. -
HiJay, I am anxious to hear if you got your questions answered. In your case, I think NO news is good news. I went in because of chest pain and within 48 hours after an ex-ray and CT scan, they told me my diagnosis, which was IPF. You are so young. Upon reading about lung diseases and also watching Utube, I found there are over 200 types of lung diseases. Don’t give up hope. I went to my personal doctor’s recommended pulmonologist and was not happy with him at all. Did some research and found a new doctor that specialized in IPF. What a difference, just in attitude. Keep searching for the most knowledgeable doctor. Contact the closest university hospital. I looked up UClA, and for me, it was too far to travel. I found a doctor who had been there for years as their director in lung disease. He is in my area. He’s now my doctor and got me started on meds right away. Good luck to you. I think you should stay positive.
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Thanks for your input. It helps. Just not not feeling alone and that others are lasting a few years is good news. My first doctor was so cold and so matter of fact. Three to 5 years to live. No Hope. A change of doctors has helped me and he got me on meds immediately. At my age I can’t hope for too much, but having been given an end date, was hard to deal with. I have adjusted to that too. Stay strong, Jackie
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Thank you for your reply. Am I the only one hoping the doctors are wrong or they say I have been cured? I just can’t believe this has happened. Magical thinking? The more I know, the better. Jackie
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I know everyone is different BUT a question. I was diagnosed with IPF in April this year. Beginning stages and I have no cough as yet. Is there a timeline when this begins? Doctor put me on OFEV and I am now taking 150mg x2. So many side effects, I don’t know if I can do this. Trying to eat right, not too much or GERD kicks in. Does it get better with prolonged use? This is “not” living as I don’t go anywhere because of Covid and also I don’t know how I will feel hour to hour. Thanks for any input. I am an 80 year old female.
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I am a woman of 83. I was diagnosed 3 years ago. I tired OFEV and it was hell. I had no life. I was very tired and had bouts of explosive diarrhea and was limited to going anywhere. I took boxes of Immodium. I found a new pulmonologist and he took me off OFEV. I almost felt like my old self again. My O levels are still good and I do not need oxygen. I am waiting for the proverbial “other shoe to drop.” I am going to my pulmonologist tomorrow to discuss options again. I have had many tests and so this one is just a consult. I am too old for a transplant and would not go through that if I could. I walk 30 minutes a day at the park. I am so thankful for the years I’ve lived since the death sentence diagnosis. I mourn for those young people sho have this disease. I am really trying to “Live one day at a Time.”
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I am so interested in your comments. I was diagnosed with IPF 3 years ago. I was taken off of OFEV as I had no quality of life. Sleep and IBS kept me at home. I am still worried if I did the right thing but I am alive. I am 83 old woman. Have had one exacerbation and it was frightening. I have a concierge pulmonologist but I still feel I don’t get enough information. Thank you for your words. Jackie
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If he likes to hoover, you must be English or Canadian. In the US we vacuum. That makes me to out of breath. Wishing you all well. Jackie
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Thank you Dr. Don. When you talk, I LISTEN! I now understand the reluctance of physicians to make a firm diagnosis, but I learned and was diagnosed in 5 days. Though at one time the pulmonologist said he was 80% sure I had IPF. I couldn’t understand the hesitation to be firm on his diagnosis. Every time I see him I think he may tell me they have made a mistake. It will be a year in April from my initial diagnosis. I have remained stable and have few symptoms other than extreme fatigue on some days. I am taking 100 mg a day. I could not live and will not live with the horrible side effects of 150 x a day. Are there any studies to affirm 100 mg x a day will be efficacious? THANK YOU again for your observations and help. Jackie
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Is it your husband that has IPF? AND you are doing the scouting and research? BRAVO to you. My husband does not seem at all interested in this. I guess he wants to live one day at a time. There seems like so much to learn and I’m too tired to do it. Research is my style, not his. I feel I have a good doctor. I still feel really well except for tiredness and that comes and goes. Again, how wonderful of you to be an advocate. Jackie
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I am an 80 year old female who was diagnosed with IPF April, 2020. I am still feeling pretty well. I am off the 150 mg x twice a day. I take 100 mg 2x a day. The quality of life was not worth the larger dose. Do not know if this will keep anything from getting worse, but it is a chance I am willing to take. Numbers have remained stable since last April. I told the doctor I wanted to cure myself. He did not laugh, but instead said a positive attitude is a MUST. Perhaps it is my age, but fear has been replaced with acceptance. Jackie
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You are a weath of knowledge and hope. Thank you for sharing.
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Let me know how you do. Jackie
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I was doing OK on 100 mg 2x a day. My diarrhea was manageable. was a bit queasy and all the rest.
Was on 100 mg for two months, so I “thought” I was adjusted. Everyone is SO different. After a few months of 150 mg, I find it intolerable. I am 80 years old and have been in the best of health. Nothing, no stitches, broken bones, except I had IBS and GERD which may have something to do with IPF. The point I am “trying” to make, is I am not a good patient. Making myself sick everyday is not working for me. It will be a year in April that I was diagnosed, and I am not on oxygen, nor do I have a cough. The meds literally make me sick. Tomorrow, I see doctor and will go back to 100 mg. For the benefits, I could live with the consequences though my doctor said the study was done with 150 mg 2x a day. It is a risk I am willing to take. I wish you the best as so many seem to do well on max. Please keep in touch, Jackie -
Gosh, I hate to be a quitter. But at my age, what is the sense of living a long miserable life? This is such a unique quandary to be in. If I was in my 40s or 50s I would do anything to live. I have barely touched the misery of IPF. Taking pills that make me feel like I have a bad case of the flu everyday seems absurd. How do you know if the pills haven’t helped? I remain stable. And angry. When I want a good day, I just don’t take the pill. I am 80 years old and have enjoyed good health. Somedays I do not have enough energy to get out of the chair. NOT from lack of oxygen, just fatigue. Just rambling, as no one can know this journey unless you’re on it. Good luck to you.