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Patricia Williams

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@prwillie

I was diagnosed in 2018 with IPF. Probably had it for some time when diagnosed. I am home bound and have an oxygen machine at home using 10 liters 24/7. I am wondering if anyone else is on a higher machine. View
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    Patricia Williams posted an update 1 year, 2 months ago

    I was diagnosed in 2018 with IPF. Probably had it for some time when diagnosed. I am home bound and have an oxygen machine at home using 10 liters 24/7. I am wondering if anyone else is on a higher machine.

  • Profile picture of Patricia Williams

    Patricia Williams started the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago

    I am in advanced IPF and all of a sudden I have gotten  worse. My breathing is terrible. Is this a phase or am I getting worse in my disease.

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Finding Joy This Holiday Season + Merry Christmas! in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago

    Good morning Charlene and I wish you a MERRY CHRISTMAS and a happy and healthy NEW YEAR.  Thank you for all you do on this forum. You are my go to gal.

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago

    I have just had a PFT and just did a sleep study with an oxymeter connected to a device to see what my oxy drops to during the night. I cannot walk to the bathroom without my oxy dropping to low 8o. When I am sitting it is usually in the high 90. I am on 5 l  24/7. I feel like I need a higher oxy number and hoping it will make me feel better. Any…[Read more]

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    Patricia Williams replied to the topic EGCG Green Tea Extract in the forum Clinical Trials 1 year, 7 months ago

    Has anyone had a good result from their dr after taking the EGCG for several months. I called the Teavigo company and a young man there recommended Healthy Origins teavigo. I am taking that, so we will see.

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 8 months ago

    My dr wants me to keep my o above 90 as well Charlene. When I am exerting myself it drops to the low 80’s so she has me bump it up another number. I am having as issue with a runny nose since I am on o pretty much 24/7. Anyone else having this issue.

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Stopping a Runny Nose When Using Supplemental Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 4 months ago

    Thank you for tips on the runny nose issue. It is driving me nuts. I recently had to buy a new mattress so I bought an electric bed (for down the road, way down I hope) and I am going to try that tonight. God bless us all. Charlene, I hope you are doing better. I have not checked in for awhile.

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic How The Apple Watch Can Assist Patients with Pulmonary Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 2 years, 4 months ago

    Happy and Healthy New Year Charlene. Hope you are doing better. I did get the oxygen set up. After having 25 family members here for Christmas with eight of them spending the night I was pretty wore out. The oxygen company called me at 5:00 in the evening saying my Dr just called in my order. He was willing to come over that night. The house was a…[Read more]

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic How The Apple Watch Can Assist Patients with Pulmonary Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 2 years, 5 months ago

    I am amazed at the thread about the Apple Watch. I have been planning on getting one but now that I see what a help it will be I am ready to dive into one. Thank you for your caring words in this forum. I have learned so much. I am waiting for a call to set up oxygen therapy for exercise, housework and shopping. Looking forward to feeling better.…[Read more]

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 2 years, 6 months ago

    I went through a program called Open Doors, it is paying full price of my Ofev. I received my meds through Humana. A nurse calls me every month to check on me and they schedule when I want my med delivered. I recently had to go on 100 instead of the 150. The diarrhea was very severe, I am still adjusting to the 100, I hope I can tolerate this one.

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Staying Hydrated for Patients with Pulmonary Fibrosis in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 7 months ago

    I just had my PFT and my diffusion went down by 15%. My dr is concerned because it does not go along with what I am able to do on a daily basis. She is going to retest me thinking it might be technical error. I have not been drinking water and wonder if that had anything to do with my low number.

  • Profile picture of Patricia Williams

    Patricia Williams posted a new activity comment 2 years, 8 months ago

    I just noticed your note Charlene. My pulmonologist called me about my hair loss and suggested Rogaine and biotin. I am currently trying that but it has only been a few weeks. I am going to check into Olaplex when I finish the Rogaine. Thank you. Also, referring to payment for Ovef, I got mine through Open Door. You might suggest this to some of…[Read more]

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    • Profile picture of Charlene Marshall
      Charlene Marshall replied 2 years, 8 months ago

      Hi Patricia,

      Thanks for your update and sharing the suggestions of the doctor regarding hair loss. Do let me know if this helps, although I know it takes a few weeks so it may not be noticeable yet. I seem to like the Olaplex so far, but it is expensive. I will share the information about Open Door in a future forum post- great idea! Thanks so…[Read more]

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Hair thinning: a side effect of Ofev? in the forum Ofev (Nintedanib) 2 years, 8 months ago

    @mary, @pamsteele, How much biotin are you taking and did your Dr approve it. Thank you

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 2 years, 8 months ago

    My physician referred me to Open Door. Please check on this. I get my med mailed to me every month. A nurse calls to check on me every month and then she transfers my call so I can set up when I want it delivered. Please check with your Dr about this.

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 2 years, 8 months ago

    As regard to the Dr prescribing Ofev, my Dr told me the side effects of each and let me choose which one I preferred.

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Ofev in the forum Ofev (Nintedanib) 2 years, 8 months ago

    Charlene, I just read a post of yours about taking a stomach coaster before you take your Ofev. I have also having issues and would like to hear more about this stomach coater Thanks

  • Profile picture of Patricia Williams

    Patricia Williams and Profile picture of Charlene MarshallCharlene Marshall are now friends 2 years, 8 months ago

  • Profile picture of Patricia Williams

    Patricia Williams posted an update 2 years, 8 months ago

    @charlene-marshall I have been getting steroid shots and now dealing with hair loss. Also I am on Ofev and that seems to be a cause of hair loss as well. Anyone else? Has anyone had any luck with hair regrow this. I have a call into my pulmonologist about it.

    • Profile picture of Charlene Marshall
      Charlene Marshall replied 2 years, 8 months ago

      Hi Patricia,

      Nice to hear from you, thanks for writing! Sorry you’re dealing with this pesky side effect of steroids and Ofev… I have a hard time with hair loss too, and it really effects me emotionally. I recently wrote about a hair repair system that my friends Mom (who is a highly sought-after hair stylist) recommended called Olaplex. It is…[Read more]

      • Profile picture of Patricia Williams
        Patricia Williams replied 2 years, 8 months ago

        I just noticed your note Charlene. My pulmonologist called me about my hair loss and suggested Rogaine and biotin. I am currently trying that but it has only been a few weeks. I am going to check into Olaplex when I finish the Rogaine. Thank you. Also, referring to payment for Ovef, I got mine through Open Door. You might suggest this to some of…[Read more]

        • Profile picture of Charlene Marshall
          Charlene Marshall replied 2 years, 8 months ago

          Hi Patricia,

          Thanks for your update and sharing the suggestions of the doctor regarding hair loss. Do let me know if this helps, although I know it takes a few weeks so it may not be noticeable yet. I seem to like the Olaplex so far, but it is expensive. I will share the information about Open Door in a future forum post- great idea! Thanks so…[Read more]

  • Profile picture of Patricia Williams

    Patricia Williams replied to the topic Hair thinning: a side effect of Ofev? in the forum Ofev (Nintedanib) 2 years, 8 months ago

    I am on Ofev and am experiencing hair loss. Hope tp get some help with this.

  • Profile picture of Patricia Williams

    Patricia Williams posted a new activity comment 2 years, 11 months ago

    Thanks for letting me join. I have gotten some help already with my Ofev. Hope I can be of some help one day as well.

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