The Patient Voice- PF member Bryan shares his story

Posted July 10th, 2014 by

 

Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

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31 Comments

  1. Thanks much for your video experience with IPF.

  2. Good for you, Bryan!! All the BEST ~

  3. Me neither. I live my life as if I don’t have IPF but at the same time do those things that may extend it. I bowl,play golf, line dance,fish etc. In others words exercise to possibly strengthen the lung muscles. I was diagnosed in 2010 and as of yet am not on oxygen. When that day comes I will take an oxygen tank to the golf course. So I agree…Do not give up.

  4. Thanks for sharing your story, Brian! I’ve never heard of IPF, but I’m rooting for you, like everyone else on PLM. Keep on keeping on!

  5. My mother was 59 when she fell and broke her leg in January 2010, when she was in hospital having it dealt with we realised there was a problem with her lungs, this turned out to be pulmonary fibrosis, in my mother’s case it was very aggressive and she passed away May 2010. She had smoked but had given up a long time earlier and was told the condition was unrelated. I believe a lung transplant is sometimes an option but by the time she was diagnosed it was too late for my mother.

  6. I can relate to this unfortuately I had a sister who had Pulmonary fibrosis and needed a double lung transplant she tried changing her diet however she didn’t exercise due to being so weak she passed at the age of 49.

  7. I have Parkinsons (just diagnosed). Really bummed and depressed, but felt a great lift from what you said. I need to be more like you and you helped me understand that.

  8. Bryan:
    Have never heard of IPF..
    I suffer from chronic asthametic bronchotsis/COPD.
    And I also have Epilepsy and Type II Diabetes and also Migraines.

    I sleep on four pillows, can’t lie flat, and must be sitting up so I can breathe.

  9. Frank:
    I’m sorry about the diagnosis.
    Try not to be bummed…look at Michael J.Fox for inspiration.
    Seek out other Parkinson’s suffers….
    That’s what I do when it comes to my Epilepsy.
    And try not to get depressed.
    Getting depressed doesn’t help, I know.
    I fight depression every day….

    Keep yourself busy with anything that makes you feel good.
    I talk on Facebook alot….I talk with old friends who I’ve known for years
    and to new friends that i’ve made on line.

  10. God loves you and I love you. Keep it going.

  11. My Mother died of Pulmonary Fibrosis. It was very bad at the end when she couldn’t get any air in. I was glad to see the oxygen because my Mother was told it wouldn’t help so they never gave her any.

  12. Very Best to you, Bryan! I appreciate your focus and attitude. What a difference when you also share; what you have shared will indeed make a significant different in other people’s lives. My issues are different but your message has a meaningful impact upon me. Thank You, Angela Eisert.

  13. I have just had seven days in hospital with pneumonia and the doctors are now investigating as to whether or not I have IPF. I had not heard of it until I was in hospital. They are hoping that the tests will discount it but they really don’t know one way or another. I already have ME and Fibromyalgia together with Asthma and the other route is that Fibromyalgia and Asthma are not helping the situation so I need treating for the two together. Thank you for sharing your story, I feel I need to know more about Pulmonary Fibrosis and have just started researching it.

  14. Glennie
    Bryan:
    Keep that fighting attitude and you will be here a long time. Positive mind…

  15. Thanks Bryan, that is how I feel. I am thankful my IPF is not aggressive. I now need to use the oxygen if walking the dog, and go up and down steps a lot slower these days. But will not let this stop me from living and enjoying life and family. My faith keeps me strong, without God I feel it would be a lot more difficult to live with.

  16. I’m going to make 2 suggestions
    1 Get your selenium level measured.It needs to be between 1.6-2 micromol/lt. If too low eat 2 Brazil nuts daily for a month, and a second month if neccessary [and for life]
    2 Take iodine. It seems everyone in USA is deficient, as we are also in NZ. Work up to maybe 12 mgs. yes mgs./ day. read Dr Brownstein’s book. This worked last week for a 7 year M.E. patient that I’m involved with .Iodine fixes fibrocystic breasts so maybe it’ll work for lungs. Let me know

  17. Thank you for sharing your medical history with us. It is difficult to have an idiopathic illness!

  18. I love your video on ipf. I have a different lung disease . I had a kidney transplant over 13 years ago the transplant medicine caused lung problems. I have no folicels on my lungs. I developed a condition like Cystic Fibrosis but not the actual disease. I cough all the time some times shortness of breath. Every 28 days i use a nebulaser to breath. I have the gene for C Fibrosis im only a carrier thats it. There is no cure for this problem that i have. I hope there is a cure for you soon. Have faith Maybe something good will come out of it.

  19. Hi Bryan i commenting on your illness from Sydney,Australia,i just fineshed watching your video,i myself have Diabete,s type 2,Bryan i have never heard of a illness that you have,but since i was a kid, im52yrs old now i was told by my doctor then that i had a severley scarred left kidney that was barely working,but my right kidney was operating reli well,my left kidney is 100cm,and my right kidney is 153cm,so for over 45yr,s ,how can i put this i being working on 1 cylinder all my working life,Bryan i got no skills,just a reli hard working laborer,but now health iusses have set in and i get reli short winded to sometimes,So mate i hope that this will cheer you up,and you have a friend in Sydney,Australia if you feel down and you want someone to open up to,im all ears mate,Well you take care Bryan,STAY HEATHLY,AND NEVER GIVE UP,Bye for now

  20. Thanks for your brave words and keep us informed Bryan

  21. So true what Bryan said. I don’t let my IPF run my life. I run it. My Christian faith helps me a lot in dealing with my IPF plus my family. I don’t let it stop me from doing the things that I like. I push myself. I am a fighter and I don’t think of when I’m going to die or how long I have. It doesn’t fit in my equation of life. To all you out there with IPF, stand strong, don’t get beaten by this.
    Anna from Texas

  22. Hello Brian and others who may read this:

    There is no doubt that the human body is a self-regulatory-system, if it get the opportunity to shift to that “mode”. This takes place in natural “self-cleaning”. As I have personal experience of healing symptoms that the medical establishment has deemed incurable and “having to live with it” (including “living” with a big package of expensive medicaments).

    I suggest to you to aim to step out of your “artificial environment” (toxic plastics, electrosmog, etc, including “identification” with a “disease.”).
    Have a break from your cultural setting, find a quiet place in nature, for solitude and self-reflection.
    Study all the material you can get your “hands on” about body-cleansing, enemas, using water and plant-extracts and to change your diet. Move in the direction of “living foods”.
    Stay away from gluten, and processed foods.
    Learn about parasite-cleanse, and Candida Albicans, amongst other fungis.

    Read everything you can get on “fasting”, including “dry fasting”.
    When your body gets the opportunity to clean it self over extensive period of time, it will self-regulate it self.
    Clean intestines are of basic importance for boosting the immune-system.
    You have to be prepared to be honest with your self and with your creator.
    Be aware that the body may be only one aspect of many, of your complete Being.
    Be prepared for facing difficulties of coming back to your (by then) “old reality”, and be careful in how you start to eat food again, how, what and quantity. … social influence is much more than most of us realise, until after such a process.
    Good Luck.

  23. i appreciate the stories as it reminds me either how much better i have it or to not give up.
    But i have one suggestion..i hate listening and rather read or have option of reading while listening to the tape. Just my own preference. THink this might be possible?
    thanks

  24. Hi Gloria Call,
    I also have Cystic Fibrosis for since last 8 years, and as u said, there is nothing for this, i have no medication and i do have shortness of breadth specially when i go on the stairs or climb up the slope or run for the bus, which i have stopped doing it, i try and do things slowly, i had my endoscopy in the it was diagonised, see the things in the lungs, and so far has about 4 x-rays, and test, i do cough uo some dark kind of blood every morning, and then its settles down after 5 mints.the doctore knows about this and said the aveiols r are gone black so it comes up, i have never smoked in my life, but my late husband did, so as a passive partner this has happend as my T.B. test done 3 times is clear…as i said no specific reason, and no treatment either..may be later in the life this will effect me..
    I have read every ones messages and good to know about the things.
    Thank you all

  25. I have asthma and my treatment has turned around since I found xolair. you can get a simple blood test to see if it will work for you. not sure if it will help but just a thought.

  26. I have every sympathy for Bryan and his condition but his determination and attitude will help him enjoy the life he has. So many of us allow our fears to rule our life once we are told we have a serious or life threatening conditions. Many of us give up and worry ourselves to death. Some people let non life threatening condition ruin their lives by simply giving up when they should fight on.
    I am not a brave man but when I was told in 2003 I only had days or maybe weeks to live, I did not give up, I did not want to leave my family and I wanted to see my grandchildren grow up.
    I was determined to carry on no matter what life threw at me. I went into I.T. twice in 2003 first coma 4 weeks the second 5. resulting in nerve damage and muscle wastage. In March 2004 I had a liver transplant and it took me months before I had the strength to learn to walk again let alone get some quality of life.
    I was told because of my condition I could only expect to live for around five years, by now you will have guessed what my answer was to that news.
    Now in 2014, I live a very happy life, I have enjoyed my extended 10 years and aim to become the longest living liver transplant patient in the UK, of course I will never achieve that aim but it gives me a good goal to aim for.
    I have very poor mobility and my main disability is constant severe pains in different parts of my body. None of which are caused by my liver transplant, my liver is as good as the day I received it. I have been lucky since my transplant and picked up half a dozen other conditions, but I am still here because I wont give in to any of it.
    When the pain gets so bad, sometimes I hide myself away but most times I just carry on because you can learn to live with it. When I am in pain I know I am alive and that’s my secret, I want to live, I want laugh and be happy, I want to enjoy my life. I do crazy things like riding the kids bikes and scooters but admit the state board is a no, no, I still feel young even if I am an old codger, for those of you across the pond a very senior citizen. I was playing football this weekend but the gout has put paid to that.
    The moral of my story is simple we cannot control what we receive in this life but we can control the way we deal with it. If we never give up and remain determined to enjoy what life we have, then I believe we can all get through it. Bryan is positive he will not give up, that will help to improve his health and as he continues to fight his condition, it will help his family. Sometime we forget the heartache and suffering our love ones go through as we attempt to tackle and come to terms with our conditions.
    I send my best wishes to Bryan and his family, you are a man of my own heart and I am sure your short film and message has inspired many of our members.
    Kind Regards Gerry This message was sent from Wickford, Essex, United Kingdom.
    P.s. I was out horse riding with the Queen this afternoon and she sends her best wishes too. Not quiet true but she is a very strong lady and would have liked your story. Maybe I will send it on. Good Luck my friend.

  27. all my blessings lord no we need a break.prayering they find a cure.bryan.thanks for your vedio..an the world poplution in our air dont help.keep up your exceriszing its good too get out an be alive in life..hi..

  28. Hi Bryan , just want to tell you that you are a great inspiration to allot us with lung diseases. Your attitude, and perserverence will keep you going way beyond what would be if you just laid down and gave up. Good luck to you,and keep doing what your doing. Bye, barbara

  29. Keep going I don’t have that condition but I have others I pray all goes good for u and don’t give up.

  30. Bryan,

    Thanks so much for your message. You provided so much encouragement to me, I can’t say how great full I am. As they say in Japanese, “Don’t give up!” and “do your best”!!!

  31. Thank you for your contributions, Bryan… so sorry you left us so soon. I hope your loved ones know how much you contributed to the lives of the IPF community. We will miss him…

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