Living with Pulmonary Fibrosis

My husband Bill is in the late stages of pulmonary fibrosis, a lung disease with no known cure. This is our story of our journey through the disease and how it has affected one family's life.

Wednesday, April 20, 2011

Thanks to those of you who continue to follow this blog and who have found the information helpful as you confront your family's issues. One thing I learned through the process is that you must be your own advocate. Study, research, learn and stand up for your spouse/parent/sibling/yourself as you deal with the myriad of doctors and other professionals who are now part of your life. To them, you are the same as the person they saw 10 minutes before and the one they will see in an hour. Ask questions; push for answers and if you don't feel you are being heard, say so. Your loved one deserves the best care possible during this difficult time.

If I can encourage or help in any way, please feel free to contact me.

posted by Memory Makers Event Planning, LLC @ 8:03 PM  

4 Comments:

  • At 12:12 PM, Blogger Brian Burns said…

    Hi there,
    My name is Brian, and I work for PatientsLikeMe (http://www.patientslikeme.com/) where I write the company blog called The Value of Openness. (http://blog.patientslikeme.com/)

    I recently came across your blog chronicling your husband Bill’s journey with pulmonary fibrosis. I’m in the process of interviewing a number of patient bloggers and authors for the PatientsLikeMe blog as part of our initiative to raise awareness about rare lung disease.

    You can check out an example of a PatientsLikeMe member talking about his journey with idiopathic pulmonary fibrosis on our blog here.
    http://blog.patientslikeme.com/2013/03/04/stiff-lungs-ians-personal-journey-from-idiopathic-pulmonary-fibrosis-diagnosis-to-lung-transplant/

    And this is a Q&A example of a psoriasis patient we interviewed for our blog.
    http://blog.patientslikeme.com/2012/12/17/my-war-with-psoriasis-an-interview-with-british-blogger-simon/

    If you're interested, I'd love to interview you next! Basically, I would send you 4-6 questions that you could answer and send back at your convenience. Also, we'd like to feature two photos of your choosing.

    Thanks for your consideration. Feel free to comment back, or you can reach me directly at bburns@patientslikeme.com

    Best,
    Brian Burns
    bburns@patientslikeme.com

    p.s. In case you're not familiar with PatientsLikeMe, we’re a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. We currently have 200,000 members and a growing lung disease community.

     

  • At 6:30 PM, Blogger Unknown said…

    I was diagnosed with polymyositis in 2002 and idiopathic pulmonary fibrosis (IPF) by a lung biopsy in 2007. I have been on prednisone at various dosages from the beginning along with various immune suppressant medications. I began taking tacrolimus in 2008 and have held off any progression of more scarring. I had shortness of breath and coughing. I was relatively active but I learned to pace myself. I have the best medical team that all work together.. As the disease progressed all medication stopped working, i was introduced to Health herbal clinic in South Africa who have successful herbal treatment to Pulmonary fibrosis and other lungs diseases. I spoke to few people who used the treatment here in USA and they all gave a positive response, so i immediately purchased the Pulmonary fibrosis herbal remedy and commenced usage, i used the herbal supplement for only 9 weeks, all symptoms gradually faded away, herbs are truly gift from God. contact this herbal clinic via their email healthherbalclinic @ gmail. com or visit www. healthherbalclinic. weebly. com

     

  • At 9:11 AM, Blogger Florence said…


    I started on COPD Herbal treatment from Ultimate Health Home, the treatment worked incredibly for my lungs condition. I used the herbal treatment for almost 4 months, it reversed my COPD. My severe shortness of breath, dry cough, chest tightness gradually disappeared. Reach Ultimate Health Home via their email at ultimatehealthhome@gmail.com . I can breath much better and It feels comfortable!

     

  • At 8:38 AM, Blogger Victoria said…


    My father was diagnosed with Parkinson's disease at 57.his symptoms were shuffling of feet,slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he had trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which has really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,i recommended this www.ultimatelifeclinic.com to anyone who needs there help.

     

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