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Cindy Sears

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@rorcsearsrnaol-com

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  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 11 months, 2 weeks ago

    I am confused. I asked my specialty pharmacy if being on Ofev meant I was immunosuppressed and the pharmacist said no that Ofev does not make me immunosuppressed.  Yet all of you seem to think we are.  Did anyone else ask their pharmacy?

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    Cindy Sears replied to the topic David Swain – a brave fight against IPF in the forum In Loving Memory 1 year, 2 months ago

    So sorry for your loss. Prayers for peace and comfort for the family.

  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Acute Exacerbation and Cyclophosphamide in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 3 months ago

    Wendy, I had a hard time after my second covid.  I had a cough and lower oxygen levels and fever.  I did gain most of it back but took 2 weeks!  Praying for recovery for you.

    Cindy

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    Cindy Sears replied to the topic Laser and ipf in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago

    Does anyone know if the study of Laser that Dr Hall was invited to participate in is still going on?

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    Cindy Sears replied to the topic Tyvaso for IPF in the forum Clinical Trials 1 year, 3 months ago

    Hi Rob, Are you in a trial?  My doctor just talked to me about getting into a trial with NAC.

    Cindy

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    Cindy Sears replied to the topic Ofev – stomach burning side effect management. in the forum Using Our Forums 1 year, 4 months ago

    I have burning in my stomach often and I attribute it to gas pains from the Ofev.  (Ofev gives me a lot of gas.) I try to not take the pills to close together( 10 to 12 hrs apart with protein) and I find keeping something in my stomach helps. I am not a Dr, this is just what has worked for me.

     

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    Cindy Sears replied to the topic Dad was placed on end-of-life care in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago

    Prayers for you and your dad as you go through this difficult time.  Vishal you cared very well for your father and did the best you could with what you knew and your father knows that also. The love shows up in your comments here.  This is a hard disease and I pray peace and comfort for you.

  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Strategies to Alleviate the "Winter Blues" in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 6 months ago

    Hi Mark,  I was put on Ofev right away when diagnosed in July of 2019 with mild to moderate IPF.  Because I am not 65 and not on Medicare but have a private insurance from work I was eligible for help.  Insurance covered most and what insurance didn’t cover this assistance program did so I have not had to pay any copay yet.  However I turn 65 in…[Read more]

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    Cindy Sears replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago

    Hi Susan I see you on here often. I feel like I know you a little!  Yes postnasal drip can cause phlegm and cough, of course I am not a Dr. just a retired nurse. Praying for strength and good health for you.

  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago

    Sorry typo age is 64.

  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago

    Hi James, Your  case sounds just like mine. I was diagnosed with IPF in 2019.  I am 54 only on 02 at night and if I want to exert myself .  I cough first thing in the morning a lot clearing a large amount of phlegm. About 20 to 30 mins. Then I still cough throughout the day and move phlegm but not as much as in the morning .  My Dr says I have a l…[Read more]

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    Cindy Sears replied to the topic DEALING WITH OFEV side effects in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago

    I think over time my abd pains decreased.  I think diet is important.  To much junk food sets off my stomach.  Think of high fiber foods and proteins.  Hope this helps you.  Give it some time.

  • Profile picture of Cindy Sears

    Cindy Sears started the topic PFTS and coughing in the forum Upcoming Medical Appointments: Q&As 1 year, 10 months ago

    I have PFTs soon.  Does anyone have any tips on how to not cough during the test?  When I take a deep breath and they want you to hold it before you exhale, I start coughing and can’t hold it.  Makes me wonder how accurate are my results. Any tips would be appreciated.

    Cindy

  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Good News! PRM-151 Positive Trial results in the forum Clinical Trials 1 year, 10 months ago

    I spoke to the company and she said Phase 3 will be starting soon. It is listed on the government trial site but not recruiting yet. Hopefully by the end of the year. I plan to try to get in this one.

  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Excessive cough during sleeping time in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 11 months ago

    @Steve Dragoo.  Hi Steve good to see you on here again. I have quietly followed you since I was diagnosed in 2019.  You had a lot of interesting information.  My symptom is coughing and I have noticed it has increased lately. Of the four meds you listed which one would you start with?  Do you know which one had the biggest results on cough?  I…[Read more]

  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 7 months ago

    Hi Thom, Thank You for sharing your experience with OFEV.  Glad to know the liver enzymes can come back down and that I may get to go back on OFEV. You have lessened my worries.  I pray your CT scan comes back better/stable. Glad to hear you are feeling fine and I am glad you are here also!  Happy New Year!  Cindy

     

  • Profile picture of Cindy Sears

    Cindy Sears replied to the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 7 months ago

    Hi Charlene, Hope you had a great Christmas Holiday and Happy New Year.  I see a Dr at U of M in Michigan. So I am  not to far from you.  Not sure what the Dr. is thinking yet.  I am supposed to call when my rash clears.  I really do not want to go off OFEV so hopefully I will get to go back on it.

     

  • Profile picture of Cindy Sears

    Cindy Sears started the topic Side effects of OFEV in the forum Ofev (Nintedanib) 2 years, 7 months ago

    Hello, I have been on OFEV for 6 months with minimal side effects.  Then this month my liver enzyme (ALT) is high and then I got covered with hives.  Has anyone else got hives or a rash from OFEV?  Dr did not think liver enzymes were high enough to stop meds  but then I got the rash and he said hold OFEV for now.

    I am  wondering if anyone has…[Read more]

  • Profile picture of Cindy Sears

    Cindy Sears posted a new activity comment 2 years, 9 months ago

    I have a banana and glass of milk with my Ofev. That works well for me no GI issues. I do remember when I first started I had slight cramps but that has passed.

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    Cindy Sears joined the group Group logo of Research and DevelopmentResearch and Development 2 years, 9 months ago

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