Patricia Fox
Forum Replies Created
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I was on LOA from my job and then went onto LTD from the insurance company my employer uses. As Sam mentioned I was also provided assistance from my employer’s company to get my SSDI established. I paid a small fee to them from my accrued SSDI but I did not have to worry about the process and paperwork as I had already submitted most things that were needed by SSDI to my employer’s insurance company. It did take a little time – maybe 5 months – but was grateful for the support.
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In 2014 I started having nonproductive cough – went to a pulmonologist recommended by my PCP. After being diagnosed with GERD, asthma and allergies over the course of 4 years I finally got a referral to a pulmonologist at UCSF. I had had a few PFTs and a CT scan during the time with the original pulmonologist.
When I saw the pulmonologist at UCSF he recommended another PFT, 6 minute walk test and high-resolution CT. In 2018 my case was presented to the ILD team at UCSF and while my pulmonologist felt strongly that I had some type of ILD he recommended a lung biopsy. I knew it was a risk but felt that after not having a diagnosis for 4 years I was ready to take the risk. The biopsy was conclusive that I had IPF. 5 years later I am still here! I tried both of the antifibrotics but had severe side effects mostly diarrhea multiple times a day and after losing close to 50 pounds (which I did not need to lose) I stopped the drugs and am seeing minor decreases in my PFT but not enough to consider supplemental oxygen yet.
Good luck with your journey!
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I just participated in a webinar presented by the Compassion and Choices organization. They have an abundance of useful information that you may find useful: https://www.compassionandchoices.org
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I started on Esbriet when I was first diagnosed 2 years ago. I had horrible side effects – constant diarrhea and lost about 40 lbs – not good. I stopped for a while then my pulmonologist suggested I try OFEV. I have been on that for almost a year. I started with 150mg/2x/daily and continued to have severe diarrhea and continued to lose weight. For the last several months I am taking 100 mg/1x/daily and still have some diarrhea but not as bad as in the past. The problem is that there is no evidence that the 100 mg/1x/daily has any significant impact to slowing the progression of IPF.
Additionally whether due to the OFEV or the IPF I have a lack of appetite so have to be very diligent about eating small amounts throughout the day.
Good luck!!