Nine years ago, Bill Vick was diagnosed with Idiopathic Pulmonary Fibrosis. With no available cure and few treatment options available, Bill embarked on his journey with IPF with the idea that the more you learn, the more you’re in control. He founded PF Warriors, a volunteer support group made up of patients, caregivers, and medical professionals—and ultimately discovered a new outlook on life.
“Dying is easy; it’s the living that’s hard.”
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I would love to know which medication Bill is on. He’s had IPF for nine years, and that’s so encouraging for all of us. Is he on oxygen?
It was refreshing listening to you. I try to explain to others and they act like I have the plague ?
I’m in the Los Angeles . And my doctors are vague . I was in Hosp with Legionaries pneumonia in July 2017. Last Nov told I had Pulmonary Fibrosis. I’m scared & confused. Pretty much stay isolated. My daughter my care taker and my son comes sometimes with kids.
I just started a few months ago I
did breasing exercise every nite so far my oxygen level on my oximeter is in the
middle 90s 95 -98 I do
another cat scan in November will no more then.
Are you taking meds now…and if so, how are they affecting you…I was just diagnosed a week ago….supposed to start with embriet….
I have IPF was diagnosed 2 years ago. I need a lung transplant. My progress is going down hill. Without the transplant I might have 6 months to a year to live. The medicine I am taking isn’t helping. I am on oxygen now . Susposed to go back to Baylor for more tests but I don’t know when .I still have to get more testing done here first. Just pray I make untill them.
It is very encouraging to me to know that Bill has lived with IPF for eight years and is still doing well. I really liked listening to what he had to say. I was diagnosed about a year and a half ago and got started on medication. That seemed to work well for me. The first months were OK, but then I was getting really sick. I stopped taking the pills for about a month and then started back, and so far I’ve been doing ok. Next month I’ll have a scan and find out how much the time of not taking the pills has affected me. I’m curious if other patients have bad side effects and how they deal with them.
My darling husband died two years ago September 10.
Went to a popular large hospital in Boston with symptoms.
They couldn’t figure it out.
Went back in, still couldn’t figure it out died six days later while in hospital.
Didn’t know it was oof until I got death certificate.
I’m so sorry to hear your pain Brenda! My sweetheart just died May 26th 2019. Just 12 days after his ipf diagnosis. The first time I read about people living with ipf I wanted to scream and cry that we were never given that chance. I miss him everyday!! Now it’s left to us who live to help others by getting the word out. Hospitals and Drs often miss ipf until it’s too late. I’m so sorry you too had to go through this. It sucks. I know.
Mr. Vick I loved your video. I would like to know if you are taking OFEV or ESBRIET?
I was diagnosed with IPF in May, 2019. I am very active and exercise regularly. I have done a lot of reading and discussing with doctors the side effects of these meds. We think my disease is slow progressing. I do not plan to take either of these meds as my Dr has told me they will change my quality of life. I do not see the pint in taking them.
I do want to stay as healthy and strong as possible. What should I do?
You are very inspiring. I will repeatedly watch your video. I sent it to my family and friends. It is good for them too.
My husband was diagnosed in June and started taking Esbriet and did good with the first bottle, the second one, he did not do well at all and had to quit taking it. He has lost 23 pounds and eats 3 good meals a day and 3 bottles of Ensure, and snacks 3 or 4 times a day and nothing is helping with the weight. He is on oxygen 24/7. He is very depressed.
Thank you for sharing your experience and wisdom.