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Bob Rawlins

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@oxygenman

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    Bob Rawlins replied to the topic Eliminating Immunosuppressants for a Transplant Patient in the forum Pre/Post Lung Transplant 2 months, 2 weeks ago

    It was one of my major concerns before I decided to have a

    double  Lung Transplant.

    I concluded that it was better than the alternative. Fibrosis was not going away and it’s not fixable at this time.

    There are lots of studies going on about that but it wasn’t going to happen before my chronic lung disease would take my life without a…[Read more]

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    Bob Rawlins replied to the topic "Breathless" Transplant News in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 1 week ago

    Russell,

    Keep the faith and strong positive attitude.

    I was on Oxygen for 6 years with a different type of disease at first, hit me out of the blue, life changing.

    last 2 years I moved into IPF state, took OFEV right up until my Double Lung Transplant, November 22, 2021.

    Best decision I’ve made. 12 weeks out a couple of hiccups but no oxygen a…[Read more]

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Tony Winter ♥️ in the forum In Loving Memory 3 months, 2 weeks ago

    So sorry to hear this.❤️🙏

    IPF is such a difficult disease that we are trying research in the healthcare community.

     

    God Bless

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    Bob Rawlins changed their profile picture 3 months, 2 weeks ago

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Happy Holidays! in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months ago

    Merry Christmas to you all!

    Stay safe and healthy during this very crazy period of increased Covid and flu season!

    looking forward to a better 2022

    God Bless you all

    Bob Rawlins

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Remembering if you took Medications in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 months, 3 weeks ago

    I use my phone and set alarms so I don’t forget.

    When the alarm goes off I stop whatever I’m doing and take the meds.

    making sure that if I venture out and it’s close to my time I have the meds with me.

    especially with Lung Transplant eventually coming for me I can’t forget to take my meds at certain and specific times.

    Hope this helps

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Started Ofev…one week in now in the forum Ofev (Nintedanib) 10 months ago

    John,

     

    hang in there. I have been on OFEV for over 2 years and it has helped me for sure.

     

    I changed from 150mg 2x a day to 100mg 2x a day

     

    it has limited

    most of the side effects for

    me

     

    good luck

  • Profile picture of Bob Rawlins

    Bob Rawlins changed their profile picture 1 year, 2 months ago

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Increased Throat Clearing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    Hi everyone,

    This a great topic.

    I struggle with keeping my nasal passages clear and believe being on oxygen 24/7 doesn’t help much either😂

    I do take 2 allergy medicines all year!

    I also use nasal sprays like fluticasone most days!

    it helps but try using Breathe Right nasal strips! It makes me have much clearer nasal passage and less throat c…[Read more]

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Dizziness and IPF in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 4 months ago

    Interesting topic for sure.

    I have experienced dizziness from time to time and mostly when I am over exerting my activity without the proper oxygen flow.

    Amazing how I used to be able to do some normal chores but forget at times the oxygen I need to get certain things done. That’s when I can get light-headed.

    I’ve been on prednisone for alm…[Read more]

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 5 months ago

    Great feedback everyone!

    I have been on O2 24/7 for almost 5 years!
    Coughing has been a bit of an issue. Morning is the worst until I get my nose cleared. I believe there is nasal drip at night for sure.

    But the things that come out of my nose each morning are nothing short of scary, lol!!

    I use a saline nasal spray and once I’m clear use f…[Read more]

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Head aches in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    I get headaches from time to time as well.

    I believe it is a side effect of IPF and Ofev

    but I tried these Breathe Right strips you can buy at the drugstore.

    they helped me quite a bit!

    worth a shot I figured, Good Luck!!

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Portable Oxygen Concentators in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    Correction

     

    pulsating models are NOT conducive to sleep on

     

    sirry didn’t catch it before I posted

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Portable Oxygen Concentators in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    I hope I can help you here.

    I have both a small portable POC and a larger one that has more flow and pulse settings.

    To be able to travel you need to have the right POC for a plane. They require you to have enough battery power for at least 2x the flight.

    Also when I travel overnight by car I make sure it can charge in the car. But you also…[Read more]

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Getting oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago

    Once you get your Doctor prescriptions call around based on what you need.

    i would suggest thinking about the kind of lifestyle you are or going to have.

    This will give than and you the best expectations.

    Good Luck!!

    breathe-easy!!!

     

     

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Getting oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago

    It can be somewhat tedious and confusing when it comes to picking an oxygen supplier.

    i made the mistake of not asking enough questions and calling several companies before choosing a supplier.

    i currently use Lincaire and I believe they are nation for the most part. They have been excellent for me out here In Ohio. Actually the delivery people…[Read more]

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Neurontin (Gabapentin) in the forum Using Our Forums 1 year, 9 months ago

    MaryBeth Palumbo,

     

    thanks for the info, I too have cough, ugh!

     

    i also have written many blogs about our journey.

    cairemedical.com/blog

    we talk about different things and coping

    Good luck on your journey. It’s a marathon that can be quite rewarding!

    #meetthechallenge

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Tailored Exercise Programs Beneficial for Patients with IPF/PF in the forum Pre/Post Lung Transplant 1 year, 9 months ago

    Yes I have participated in pulmonary rehab for over 3 years and it is the best.

    Actually one of the reasons I am keeping consistent with my baseline while taking OFEV to help slow the progression.

    unfortunately, since  Covid they have shutdown pulmonary rehab and I really miss it.

    I go on more walks and have a stationary bike that I exercise…[Read more]

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic Restless Leg Syndrome Common Among IPF Patients in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years ago

    I have some of this RLS quite often and at night.

    i started taking some Vitamin D and Iron supplements as suggested by my doctor and it seems to have them be more far and few between.

    but, unfortunately it does make hard to sleep at night.

    But I don’t get it as often now after about 2 weeks into taking the supplements.

  • Profile picture of Bob Rawlins

    Bob Rawlins replied to the topic OFEV and milk in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years ago

    I take OFEV 2x a day 150 mg

    No issues with milk or any foods really.

    but taking it with or right after eating has limited some of the nausea feeling I get once in a while.

    my first tests after being on it 6 months is in June

    Anxious to see if there is any slow down, feel the same

     

     

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This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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