Forum Replies Created

  • rod-danner

    Member
    July 7, 2022 at 2:33 pm in reply to: Painful hand and leg cramps

    I have found that the absolute best thing for quickly dealing with cramps is a magnesium foam called “Theraworx” it is available at pharmacies and some sporting goods stores. Just spray some on and rub it in. It helps provide almost immediate relief. Also, hydration and magnesium supplements may help some too, the hydration for sure.

  • rod-danner

    Member
    April 22, 2022 at 11:02 am in reply to: Top 4 Words You’d Use to Describe IPF

    Smothering, progressive, incurable, and terminal.  It’s certainly not a pretty picture.

  • rod-danner

    Member
    April 13, 2022 at 11:19 am in reply to: How are long-term (4+ years) OFEV users doing?

    I have been on OFEV for 6 years as of two days ago. The only actual side effects that have been a problem have been some stomach cramping and the associated diarrhea. I have been able to keep the diarrhea mostly under control with Loperamide (Immodium) by just taking one when the first sign of loose stools appears. If I am going to be traveling for the day, I take it preemptively. Over the six year period, my stats have decreased, which is to be expected. I am certain that the decline is much slower than it would have been without the medication. I am now on 2LPM O2 pretty much when ambulatory, although I do recover pretty quickly. I take 150 Mg twice daily, always with food of some sort. I have experienced lack of appetite over the past six months or so, but I imagine that is more attributable to the disease rather than the medication.

  • rod-danner

    Member
    November 12, 2021 at 9:40 am in reply to: Inhaler use

    I use Albuterol on occasion before exercise and before bed. It does seem to help. I also use a nebulizer with Albuterol when I seem more “choked up” than usual. It also does seem to offer some relief. They also test me with Albuterol during my PFTs and it does show some improvement post-use.

  • rod-danner

    Member
    December 8, 2020 at 3:43 pm in reply to: Do others with IPF cough for 20 minutes every morning?

    I have a cough, although it doesn’t go on quite as long as with the OP. Mine is most prevalent at bedtime and in the morning, but will also occur during the day. I often cough so hard and long to expel mucus that it causes cramps in my intercostal muscles in the back and in my transversus thoracic muscle. The cramps are quite painful. I discovered a device on the internet called the Air Physio that is an Australian product. http://AirPhysioglobal.com for the US market, the device is shipped from IL. I have waited a few weeks of use before posting about the device, but I believe it works. There are many positive reviews, mostly from COPD and Asthma sufferers. It uses an Oscillating Positive Expiratory Pressure to assist in dislodging mucus, thus making it somewhat easier to expectorate. It does cause coughing sometimes during and after use. It does seem to make the mucus thinner and less tenacious causing less work (hard coughing) to get rid of it. It certainly seems to help reduce the coughing when I go from vertical to horizontal at bedtime. When you use it, you can feel the vibrating pressures in your chest as the steel ball is raised and lowered by your exhalation. It is also supposed to assist in lung capacity, but I can’t attest to that until my next PFT. It does give me some relief so I wanted to recommend it. Your mileage may vary, but I thought it was well worth the $60 expenditure.

  • rod-danner

    Member
    January 9, 2020 at 8:56 am in reply to: How The Apple Watch Can Assist Patients with Pulmonary Fibrosis

    The Breathe app is native. It will already be on your watch.

  • rod-danner

    Member
    January 8, 2020 at 8:33 am in reply to: How The Apple Watch Can Assist Patients with Pulmonary Fibrosis

    I thought I would give an update on my experience with the Apple Watch 5 that was under the tree on Christmas. I have been exploring the use and potential over the last two weeks. I have found it to be extremely useful in any number of ways both health and related to life in general. It works relatively seamlessly with my iPhone, although, it sometimes takes some fiddling and tweaking to get the result you want.

    The watch replaced my Fitbit, of which, I was quite fond. Many of the features of the Fitbit are mirrored with the watch, but the endpoint data is much more thorough. I find that the reminders to breathe and to stand are a good way to keep you from sitting for too long. Closing the activity rings gives you a daily challenge. You can adjust the “Move” goal for a different calorie burn threshold, but that is the only one you can tweak. Although I try to exercise daily, I find that I often do not close the “Exercise” ring. It often gives me little to no credit for a two-mile walk. It is pulse rated and I find that if I walk fast enough to elevate the pulse to the required level, my wife can’t keep up. That said, it does give you a complete readout of time, distance, heart rate, calorie burn, pace etc even if it doesn’t close the ring. I have tried using “Map my Walk” with the workout app, but it gives you double readings in the “Health” app.

    Many of the apps I had on my phone exported to the watch which was quite surprising and convenient. I have added a couple of iPhone/Watch 5 apps which I find excellent if you’re kind of obsessive about monitoring health data. The first is called “Heartwatch”, which coupled with the heart measurement capabilities gives you all kinds of data, including time in elevated heart rate zones (warmup, fat burn, fitness, etc) which was missing from the “workout” app. There is a companion app called “Autosleep” that monitors lots of information about your sleep patterns. Both of these are much more thorough than the data from my Fitbit. The apps are $2.99 each in the App Store and will work with only the series 4&5.

    I am extremely pleased with my watch and am finding it increasingly useful every day. I have the GPS only, no cellular. I consider it to be a good investment in monitoring my health.

    My apologies for this being so long.

  • rod-danner

    Member
    December 13, 2019 at 8:14 am in reply to: How The Apple Watch Can Assist Patients with Pulmonary Fibrosis

    I had not really been interested in an Apple watch until the series 4 & 5.  The new capabilities will be useful and they keep adding more with each update. I agree that O2 saturation would be a real benefit. I will be seeing one under the tree for Christmas.  Be careful Lorraine, the quality and performance of your iPhone may lead you down a financially damaging path. I ended up so impressed with the iPhone that I pretty much joined the whole Apple ecosystem, replacing my PC with an iMac and my laptop with a Macbook and added an iPad.  The beauty of it is that they all work together wirelessly and fairly seamlessly. Enjoy your iPhone.

  • rod-danner

    Member
    November 26, 2019 at 11:50 am in reply to: Do you take OFEV? Take our poll!

    I have been on OFEV for almost three years. It is the first and only IPF medication I have used. I live in Florida and bicycle a lot, so Esbriet was a non-starter for me.  Of course, the effectiveness of the medication is quite subjective. I do believe that it has slowed progression, but then, how fast would it progress without? Anyway, other than loose stools and some cramping from that, I have been satisfied. I have not yet been hospitalized for IPF related issues. I was informally diagnosed on Christmas eve 2013 with a more formal diagnosis in February 2014.

  • rod-danner

    Member
    March 3, 2022 at 6:59 pm in reply to: OFEV low 02 levels

    I agree with Paul Lakeland. The drop in O2 levels is most likely from the progression of the disease.

  • rod-danner

    Member
    January 22, 2021 at 9:54 am in reply to: Phlegm

    Hello Ted,

    It seems that oscillating pressure is a treatment that is common in the southern hemisphere. I have been using a device called an Air-Physio that is made in Australia. It is the same concept with the steel ball vibrating as you exhale. I have found that when I use it before bed especially, it tends to cut down on some of the coughing that occurs when I actually lie down for the night. Interestingly enough, I ran across it on Facebook and decided to give it a try. It does seem to help. I think it is also available on Amazon but when I bought it was $10 less expensive on the company’s website. It shipped from Illinois, so no long wait. I do think it tends to loosen up the phlegm.https://www.airphysioglobal.com/info-order-usa-v240869689?gclid=Cj0KCQiAjKqABhDLARIsABbJrGnr1Wlc3ph2DDXBv-58XDRyERcd6T3lRLz6m2bp3pmQpCEIVNKsF6oaApNXEALw_wcB

     

  • rod-danner

    Member
    December 10, 2020 at 12:22 am in reply to: Do others with IPF cough for 20 minutes every morning?

    Hi Susan. I have already been using a wedge pillow and the head of my bed has been raised. I decided to try an experiment last night and sleep flat. It was with less coughing as I had been experiencing with the wedge. It was successful and I’ll give it another try tonight. It’s the same way for me with the cramps. I also get them when not coughing.