@jackie-leko-kalina
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Jackie Kalina replied to the topic The Story of my Father's IPF journey in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
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…[Read more]
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Jackie Kalina replied to the topic When should you start antifibrotics? in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 1 week ago
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…[Read more]
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Jackie Kalina replied to the topic Telling your family in the forum Living with Pulmonary Fibrosis: 50+ 11 months ago
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 yo…[Read more]
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Jackie Kalina posted a new activity comment 11 months, 1 week ago
Thanks for your reply. No, I am not on Oxygen yet. Though extremely tired. I have discovered eating a heavy bread is helping with gastric problems. Jackie
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Jackie Kalina posted a new activity comment 11 months, 2 weeks ago
Thanks so much Christie. I do have an oximeter..It does drop into the 80s at times but after sitting for a few minute it jumps up to 98 or 99. It’s strange the doctor never even explained anything to me. I got up at 8:30 this morning and it is l:00 and I am exhausted. I have to take a nap. 5 more weeks until I can see the new doctor. When…[Read more]
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Jackie Kalina posted an update 11 months, 3 weeks ago
Have just been reading about study only 40% of patients w IPF are taking meds. I was diagnosed in 2020 and still do not need oxygen. I take 100 mg 2x a day. Could not tolerate larger dose. My stomach is really acting out again and I am not taking any meds for 2 days. My dr left the state and have to see a new one in May. The earliest I could…[Read more]
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Hi Jackie, I know it’s a bit of a wait before you get into your new pulmonologist, but those are concerns they should be able to address. If you are really suffering, or suffering from new side effects, perhaps you could call daily and see if they have any last minutes cancellations and can fit you in. If it is an exacerbation, it needs to be…[Read more]
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Thanks so much Christie. I do have an oximeter..It does drop into the 80s at times but after sitting for a few minute it jumps up to 98 or 99. It’s strange the doctor never even explained anything to me. I got up at 8:30 this morning and it is l:00 and I am exhausted. I have to take a nap. 5 more weeks until I can see the new doctor. When…[Read more]
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I actually don’t have it. I was a caregiver for my mom who had it and got a bilateral lung transplant. So I don’t have firsthand experience as a PF patient.. All I know about antifibrotics is from learning from other people. But I do know that you shouldn’t quit them without consulting a doctor first. My mom was on OFEV but only for 6 months…[Read more]
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Thanks for your reply. No, I am not on Oxygen yet. Though extremely tired. I have discovered eating a heavy bread is helping with gastric problems. Jackie
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Jackie Kalina replied to the topic New to this forum and kind of confused in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years ago
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…[Read more]
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Jackie Kalina replied to the topic POSSIBLE MISDIAGNOSIS in the forum Diagnosis Information and General Questions 2 years ago
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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Jackie Kalina replied to the topic POSSIBLE MISDIAGNOSIS in the forum Diagnosis Information and General Questions 2 years ago
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…[Read more]
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Jackie Kalina replied to the topic POSSIBLE MISDIAGNOSIS in the forum Diagnosis Information and General Questions 2 years ago
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…[Read more]
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Jackie Kalina replied to the topic POSSIBLE MISDIAGNOSIS in the forum Diagnosis Information and General Questions 2 years ago
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…[Read more]
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Jackie Kalina replied to the topic Living Our Lives in the forum Hobbies & Projects 2 years ago
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…[Read more]
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Jackie Kalina replied to the topic POSSIBLE MISDIAGNOSIS in the forum Diagnosis Information and General Questions 2 years ago
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…[Read more]
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Jackie Kalina replied to the topic Life span in the forum Diagnosis Information and General Questions 2 years, 1 month ago
You are a weath of knowledge and hope. Thank you for sharing.
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Jackie Kalina replied to the topic Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 1 month ago
Let me know how you do. Jackie
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Jackie Kalina replied to the topic Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 1 month ago
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…[Read more] -
Jackie Kalina replied to the topic Has anyone stopped taking Esbriet? in the forum Esbriet (Pirfenidone) 2 years, 2 months ago
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…[Read more]
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Jackie Kalina and
Regina Bolyard are now friends 2 years, 2 months ago
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Jackie Kalina replied to the topic Has anyone stopped taking Esbriet? in the forum Esbriet (Pirfenidone) 2 years, 2 months ago
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…[Read more]
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Jackie Kalina replied to the topic Mom can no longer feed herself in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 2 months ago
WHEN MY MOM WAS DYING OF LUNG CNCER, HOSPICE ANSWERED THESE QUESTIONS.
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I actually don’t have it. I was a caregiver for my mom who had it and got a bilateral lung transplant. So I don’t have firsthand experience as a PF patient.. All I know about antifibrotics is from learning from other people. But I do know that you shouldn’t quit them without consulting a doctor first. My mom was on OFEV but only for 6 months…[Read more]