[Connie Lum]

I was diagnosed in 2018. Mild IPF, walk 3 miles about 3-4 times a week and bike 10 miles a couple of times a week, asymptomatic. My brother had a lung transplant in 2018 at the age of 61 due to IPF, that’s why my siblings were tested. 3 out of the 5 are positive. I am the only female, my younger brother just passed away from IPF 2 weeks ago. He was 63 and did not want a transplant after watching our other brother. My other brother is doing great 5 years later.  Everyone has their own reasons for not wanting a transplant. I respected my brother’s decision. I think for myself I would want one, I am 71 now, I may be too old by the time I need one but that’s ok too. You must trust the journey.

[Connie Lum]

I am one of 5 children, 2 older sisters and 2 younger brothers. 3 of the 5 have IPF. One of my brothers had a bilateral lung transplant 4 years ago. He did smoke, the other brother, the youngest has never smoked and is on oxygen 24/7. I have no symptoms and never smoked. I am the only female who has been diagnosed, my older sisters do not have it. My father had COPD on oxygen and had a chronic cough, he may have had it too but back then we did not have the technology. He died at 72. I have told my children so they can tell their healthcare providers. Seems to be at least a familial link here.

[Connie Lum]

Hi Charlene,

My younger brother had a double lung transplant going on 4 years in July , he was 61 when he received the lungs. Doing well, he would have died if he hadn’t. Because of this all the siblings had been tested. Out of the other 4, 2 of us were positive. My youngest brother, currently 62, is on 24/7 oxygen at 4 lpm at rest. He suddenly took a turn for the worse when he required gallbladder surgery. That surgery went fine but his lungs took an irreversible hit. I will be 70 this year and was diagnosed when my other brother had his transplant.  Asymptomatic at the moment. My brother doesn’t want a transplant even though he’s only 62. His choice, he’s married with no children. I watch him carefully, for I know the road he is going down will be the road I will take. I can’t decide about a transplant. Too early. I will have to see what happens to my brothers. I am lucky to be able to compare the one who had the transplant and the one who refuses to get one. Time will tell. It’s a difficult decision to make. Good luck everyone!

[Connie Lum]

I was diagnosed with IPF a little over 4 years ago. I am on Esbriet and have no symptoms. I was tested for IPF because my brother had it , he was diagnosed in April 2018 had a transplant in July 2018. My other brother and I were positive for IPF. I have no issues but my brother has a steady decline . I was the most active of my brothers. I continue to be active walking at least 3 miles 5x /day. I do yoga and tai chi. Yoga breathing is a great way to strengthen your lung capacity but it takes practice to learn to do it right. Try yoga breathing and see if it helps.

[Connie Lum]

Hi All,

I noticed a loss of appetite that comes and goes. I’m on Esbriet. I noticed an increase in my sense of smell and I don’t have an aversion but I don’t enjoy my wine anymore. A real bummer. Lots of food taste very salty too.  I also noticed that when I’m done eating I’m done. I used to eat everything on my plate but not anymore, it’s as if a switch is turned off. Very interesting. Thanks for bringing up this topic.

[Connie Lum]

I’ve been on Esbriet since October 2018. Initially I had to reduce dose age for Heartburn reflux issues but was able to take the full dose relatively quickly. I have had very few side effects and none that prevents me from my regular activity. Unless I have a increase of liver enzymes or the drug is no longer working (i.e. worsening PFT results or CT scan) I will continue to take it. I am not on oxygen and was diagnosed only because my brother had a double lung transplant at the age of 61. All the siblings were tested and out of 5 , 3 of us have the disease. I am almost 68 and females. They say it happens more in males, my sisters are negative. I would say take it as long as possible, it’s the only choice we have at this time. I am in a clinical trial too. Try to have a positive attitude and keep active. Take care?

[Connie Lum]

Hi All- I am 67. I was diagnosed mid 2018. I chose Esbriet over Ovfev after reading posts from others , I didn’t want the GI problems. I had a slight reaction to sun exposure in form of a rash but I protect myself and have no problem. I did have to cut back occasionally while taking the 9 pills a day. I gradually was able to take the full dose and now take 3 -801mg dosing a day. I do have to make sure I take them at least 4 hours apart. Taking with food doesn’t seem to be an issue,although I do make sure I have something in my stomach. I do get an occasional heartburn or reflux symptom, I take 40mg a day of omeprazole. I enjoy reading what others do. Thanks Charlene!

[Connie Lum]

I retired in August 2017 after working in the neonatal intensive care unit for 35 years. Exposure to numerous xrays taken for my patients. We either moved away from the bedside or wore a protective apron. There were many other exposures. My parents smoked for years. My dad was diagnosed with COPD (could this have beeen IPF?) he ended up on oxygen and had a chronic cough. I have 2 older sisters and 2 younger brothers. One brother was diagnosed with IPF in April 2018 and went downhill quickly after contracting rhinovirus and had a bilateral lung transplant July 2018, he is currently doing well. My other brother also has it requiring oxygen during activity, he too has a cough, he thought it was allergies until we all had to get tested after my brother’s transplant. I am active walking 3-5 miles a day. I have no symptoms and taking Esbriet. My sisters are negative for the disease.  It’s more common in males so why do I have it?Who knows. We were all exposed to second hand smoke, the 3 youngest had less exposure than the sisters. One sister and the brother who received the lung transplant are ex smokers. I am the most active. I can’t find a common link. That’s just how it is. I intend to continue my life as I always have, I’m in a clinical trial. There may be no answer just LIVE!!! Everyday is precious.

[Connie Lum]

Hi everyone,

I live on the west coast, about 1.5 hours east of San Francisco. It gets hot this Far East but not humid. I am on Esbriet for almost a year. Tolerating it well so far. You would never know I had IPF. I try and walk 5 miles a day in the morning. I have noticed that I’ve sweat more lately. I usually don’t break out in a sweat until after I stop doing something but lately it’s been while I’m walking . I also get hot faster than before. It’s not menopause either. Been there. I sometimes feel like  I’m more tired or short of breath at times but when I get home and check my oxygenation it usually is 94-98. I’m glad you posted this. It didn’t occur to me that it may be related to IPF or the meds. I really enjoy reading this forum. Thank you .

[Connie Lum]

I have been diagnosed since June 2018 and on Esbriet since October 2018. I am currently asymptotic. I have noticed a lack of appetite and interest in food. I seem to have a heightened sense of smell at times and the worse part is I don’t enjoy wine as much! I believe it is due do the medication.