john sliwinski replied to the topic Healing scar tissue zoom call recording in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
Where’s the link?
john sliwinski replied to the topic Healing scar tissue zoom call recording in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 1 week ago
Please send me the link. Thank you.
john sliwinski replied to the topic Taking time off from esbriet in the forum Esbriet (Pirfenidone) 1 year, 9 months ago
Listen up everyone who is taking Esbriet 9 pills a day.That is the old way. They have Esbriet which is now 801mg and you only take 1 pill 3 times a day rather than the 9 pills. Check with your pulmonologist.
john sliwinski replied to the topic Life span in the forum Diagnosis Information and General Questions 2 years ago
My local pulmonologist stated my life span would be 2-5 years. However after getting a second opinion at a Center of Excellence (Univ. of Pa.) and after they doctor there reviewed my lung biopsy I was told I had over 10 years plus. So far it has been 5 years and still on Esbriet and stable. One thing to keep in mind sitting or lying around does…[Read more]
john sliwinski replied to the topic Taking time off from esbriet in the forum Esbriet (Pirfenidone) 2 years, 3 months ago
Steve listen to everyone and do consult your pulmonologist prior to stopping your medication. Playing doctor on your own is not the answer. Don’t do more harm than good.
I have been on Esbriet for almost 4 years and luckily for me did not have any side effects. I am stable so far and hope to remain that way.
Keep us posted.
john sliwinski posted a new activity comment 2 years, 4 months ago
Thanks for your update Denny. Keep me posted if you find a trial and I will do the same. Seems these trials are very selective in what they actually want.
john sliwinski replied to the topic GLPG1690 Clinical Trial in the forum Clinical Trials 2 years, 5 months ago
I was selected for the Galapegos trial in Philadelphia and on my first visit they did a cat scan of my lungs and put me through lung function tests. After they got the cat scan results I was disqualified since my lungs were in not that bad of shape for my age (72 years old). I was totally disappointed that I could no longer participate but one has…[Read more]
john sliwinski replied to the topic I Did Everything Right, So Why Did I End Up With Pulmonary Fibrosis? in the forum Flash Briefings & Podcasts 3 years, 1 month ago
Who knows like others have said. I worked in a steel mill for a few summers while in college, I smoked and stopped. My cause was GERD. Acid reflux in the night and all I thought it was just heart burn and took an antacid. My local pulmonologist said I had 2-5 years left but on second opinion at Penn in Philly I was told 10+ years. I am 72 years…[Read more]
john sliwinski replied to the topic Utilizing Technology While Living with Pulmonary Fibrosis in the forum Flash Briefings & Podcasts 3 years, 2 months ago
Does anyone know of a wrist device that also keeps track of your pulse ox?
john sliwinski replied to the topic Gabapentin For IPF-Related Cough? in the forum Diagnosis Information and General Questions 3 years, 12 months ago
I am on 1800mg of gabapentin daily (i.e. 600mg every 8 hours). My cough has subsided but not entirely. Prior to be prescribed the med I used to cough all day long. I explained that to my pulmonologist at Penn Med and she started me on a low dose and titrated me up to 2400 mg which was too much. I feel comfortable with 1800mg but that dose could be…[Read more]
john sliwinski became a registered member 4 years, 1 month ago