ken-monroe
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I have IPF and I have had a rotator cuff surgery and a Nissen fundoplication, both requiring general anesthesia. I have also had numerous EGD scopes with “twilight sleep,” or light anesthesia. I am not on O2 and current PFT stat’s aren’t too bad. I’m also on Esbriet. I had no problems with the surgeries, but… the rotator cuff was outpatient and the Nissen was a 2 night stay. These were both before Covid. I would assume that post-Covid risks are higher but probably very hospital dependent.
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I’m on Esbriet and I’ve gotten every COVID vaccine/booster that has come out, plus the annual flu shot and the RSV shot. I’ve had no issues, other than a sore arm for a day.
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I use Mayo in FL.
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I have been using the Teavigo ECGC extract as defined in the study since it first appeared on PFF. In addition, I started Esbriet a year or more before the ECGC article. My PFT results have had a slight decline but nothing very significant. I’m also in a clinical trial involving inhaled Tyvaso which is normally used for pulmonary artery hypertension. The theory behind the Tyvaso trial is it may help with IPF.
Does any of this help? Who knows – a single person trying these drugs can not tell you if they are good or not. They need the statistical data from larger populations in order to make those kinds of conclusions.
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I have GERD and Barrett’s esophagus, along with IPF. I had a fundoplication just over a year ago. My GERD symptoms generally became much better, my lungs no longer feel “burnt” in the morning, my chronic esophagitis is gone and my Barrett’s is better (there’s no cure). I take a low dose PPI in the m0rnings.
I still have bouts of chest pain which I’m trying to figure out. I believe they are related to some combination of gas and esophageal spasm. I might need a dilation which is not that uncommon. Common side effects are gas… and gas! Some people may experience “dumping syndrome” or swallowing issues.
Would I do it again – absolutely.
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@kristin-andrews
I’ve been on Metformin for well over 15 years; I’ve had IPF for at least 9 of those years. Is it safe – yes. I think it’s the most common drug for Type II diabetes. Does it slow down IPF – unknown and can’t be proven outside of a controlled trial.
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Biogen BG00011 was stopped due to safety concerns.
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I live in Vero Beach FL (southeast coast of FL). I receive my IPF care at Mayo Clinic Jacksonville, 3 hours (211 miles) away. I am not in any local support group; I don’t know that there are any. Not yet on any medications or oxygen.
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I go to Mayo JAX also. Who’s your doc there?
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It’s my understanding the Zephyrus trials (pamrevlumab) have been cancelled.
