Forum Replies Created

  • Cloud Mason

    June 27, 2019 at 9:33 am in reply to: Working After Lung Transplantation

    Hi Mark, ( @mark-koziol )

    I was diagnosed with IPF in May 2017. Working at a large university was increasingly difficult at my condition progressed.  Like David, I work from home. I’m a Software Developer/Analyst and am blessed with an understanding boss and an employer who encouraged me to apply for a disability accommodation which was granted. I am on 4L of oxygen 24/7, so not having to go an office on campus allows me to run my air purifiers and concentrator without bothering others. Working from home also reduces my risk of infections by avoiding direct and indirect contact with thousands of students.

    In April,  I had an initial evaluation as a candidate for a lung transplant at Baylor in Dallas. The surgeon prescribed Esbriet and Pulmonary rehab, both of which I started two weeks ago. I am having trouble with some adverse effects of the Esbriet. The most problematic issues are fatigue, dizziness, and brain fog. I need to be able to think clearly to do my job. I need to continue to work for as long as possible and am hoping to get accepted into Baylor’s transplant program. I go back to Dallas in August for the next evaluation phase of the transplant intake program – 5 days of testing, interviews, and orientation. I am very interested to hear any and all stories of lung transplant experiences. One of my big concerns is the use of Prednisone during and after surgery as I have had some adverse effects from low doses of Prednisone in the past (swelling in my lower legs and feet and depression).

    I want to thank David, Coreeta, and Charlene along with Mark for sharing your stories.


  • Cloud Mason

    April 9, 2019 at 10:52 am in reply to: Photography

    Awesome work, Katie. You live in such a beautiful area.


  • Hi, Charlene and Katie,

    I’m a serious film enthusiast and have put both films on my must-see list. I have encountered only two people out of all my family and friends who had ever heard of pulmonary fibrosis. I can’t begin to tell you how many times I’ve been asked, “What’s the name of that thing you have.”   Any movie that increases awareness of the IPF along with the issues involved for patients, caretakers, and family is a great thing.

    Thanks for sharing!

  • Cloud Mason

    April 2, 2019 at 7:54 pm in reply to: Photography

    Hi Katie,

    Sharing your Dad’s passion for photography is surely a wonderful thing. I’m an extremely serious amateur photographer. I’ve had the bug for over 50 years. Here are a few tips:

    • The best camera is the one you have with you.
    • You don’t need an expensive DSLR to take great photos. iPhones and others have excellent cameras with wide-angle lens focal lengths which is great for landscape photography.
    • I recommend early to mid-morning and mid- to late-afternoon times for shooting landscapes.
    • Take photography classes at your local community college or online. Here’s a fabulous resource for photographers of all skill levels:
    • Shoot, shoot, shoot. Take pictures of anything and everything all the time.

    I was going to include a few of my favorite shots but the insert/edit image function does not seem to be working. Here’s a link to a shot of a Blue Morph butterfly taken with my iPhone 5:


    Thanks for sharing your stories and advice. Earlier, I read your excellent post on palliative and end-of-life care. Thanks for sharing your experiences and insights.

  • Cloud Mason

    July 10, 2018 at 4:03 pm in reply to: Reducing Lung Fibrosis: A Study Involving Metformin

    This is very good news indeed. I look forward to continued research with Metformin!

  • Cloud Mason

    July 6, 2018 at 12:20 pm in reply to: Symptoms of Laying Flat with Pulmonary Fibrosis.

    The sleep study was done several years prior to the IPF diagnosis. I had been experiencing Excessive Daytime Sleepiness. After a plethora of tests and different medications, my GP finally decided that a sleep study was called for. I had gained a lot of weight in the prior year (~30 pounds) which my neurologist said often triggers sleep apnea. I thought I had a brain tumor or some horrible disease like early onset Alzheimers, which my mother had. Then two years ago I had an ischemic stroke, minor in the context of all strokes, yet I still suffer from many of the effects of damage done including post-stroke fatigue, poor fine motor skills on my left side that have greatly reduced my typing skills – this is one of the more troubling outcomes as I am a software engineer and use a keyboard all day. When the ER neurologist visited me after receiving the MRI results, he said, “Yes, you have just experienced a lacunar thalamic ischemic stroke in the right side of your brain, but the scan also reveals that you previously had a stroke in your basal ganglia.” That second part was news to me. They are often referred to as sleeping strokes and people usually have no clue that they have had a stroke. More recent research correlates this type of stroke with Excessive Daytime Sleepiness, which I still have but not to the same degree since I started using a C-PAP machine.

    The GERD is well controlled with Protonix, which I’ve taken for years and wondered about its long-term side effects. Fortunately, the many articles and papers claiming that this class of drug would cause a variety of problems have all been debunked.

    The wedge pillow supports my entire upper body. I do use a very soft pillow, burying my head deep into it such that most of the stuffing ends up on the sides of my head keeping me from waking up with a neck ache.

  • Cloud Mason

    July 5, 2018 at 7:57 pm in reply to: Symptoms of Laying Flat with Pulmonary Fibrosis.

    Hi Charlene,

    For most of my life, I thought that I slept on my side throughout the night until I had a sleep study done. After the study, my neurologist told me that I have acute sleep apnea. He also informed me that although I go to sleep and wake up on my side, the remainder of the night I sleep flat on my back. I had a knee replacement three years ago (too much racquetball and backpacking). After the operation, I got accustomed to going to sleep on my back and continued to do so. I moved my pillow from under my head to under right knee and lower leg. Having one knee bent also keeps my lower back from hurting.

    I was diagnosed with IPF a little over a year ago. I believe the cause is a result of me sleeping flat on my back without a head pillow and at some point, I aspirated acid from my stomach into my lungs. I have a serious case of GERD that started years ago.

    Since my IPF diagnosis, the most common time that I have a coughing fit is when I first lie down on my back, so it often takes me a while to get to sleep. I recently bought a Bed Wedge, FitPlus wedge pillow on Amazon (1.5 Inches Memory Foam, 2 Year Warranty, 24″ x 28″ x 7.5″). It has helped to significantly reduce those initial coughing fits when I lie down. While it took a week or so for me to get accustomed to it, I sleep much better now with much less coughing when I get into bed.

    Best of luck,