Ron Reid
Forum Replies Created
-
My happy place is bird-watching, a hobby that can take you to interesting places anywhere in the world. Living with IPF has trimmed my travel and mobility somewhat, but I can still get out to watch birds frequently around my home turf, using my car as a blind. I can still walk for about a half-mile with the help of my POC, so not completely limited to a vehicle. And we have 6 birdfeeders at home, which bring me and my wife a lot of joy. If you don’t mind rising with the sun, give birding a try – a great way to keep your mind and body active, and to connect with the natural environment as well.
-
Exposed to wood dust repeatedly over the 10 years prior to my IPF diagnosis. And I foolishly did not wear a mask. That’s the only factor I can think of that might have triggered my IPF.
-
I miss Rene as well – his great sense of humour; his generosity; even his accent. So glad that he lived to see the Guide to Idiopathic Pulmonary Fibrosis and Interstitial Lung Disease published – he was one of the 10 patients who contributed greatly to this new guide. So along with all his other life accomplishments, he became a published author as well!
Rene was a man that I admired greatly. Godspeed on your passing.
-
Hi Charlene:
Good to know about these complications and to watch for signs of them. But when I followed the link you provided, it only addressed the first complication and did not go further. Is there a way to see the rest of them?
Ron
-
A recent book that I found very helpful is With the End in Mind: Dying, Death and Wisdom in an Age of Denial, by Kathryn Mannix. The author is a physician specializing in palliative care; the book is based around a series of stories of real patients. Very well written and reassuring; I recommend it highly. It is published by littlebrownspark.com; available online.
-
I often experience morning dizziness when I get out of bed, especially if I am moving my head from side to side. Also get temporary dizziness when bending over. My oxygen levels are OK; just seems to be something associated with IPF.
-
I might have missed this on the thread, but one very helpful accessory for the Respironics Simply Go Mini concentrator is a backpack for use instead of the usual side strap. The backpack distributes the weight evenly when you are walking, and has mesh at the bottom to allow for air flow. If you are still active in walking, etc. it is a godsend.
We are in Canada where the backpack is not easy to find, but we eventually made contact with the company in the U.S. and they shipped it to us. We had to pay for it, and it is not cheap (I think around U.S. $150 but that was a few years ago). But well worth the cost – I use it daily, and it has been especially good for travel.
Ron
-
Hi Charlene:
Another Canadian here – from the Orillia area. I started Esbriet last spring; much easier to tolerate than Ofev for GI issues, but after I graduated to the full dose, I got a major itchy rash that persisted for months. At first, only on areas exposed to the sun, although I had been careful to minimize my exposure and to use sunscreen. Then spread to other areas like my chest that had always been covered by clothing. After talking with the staff at the Inspire program, I stopped taking the Esbriet until the rash healed up. Am now gradually starting again, but on the advice of my doctor, will likely just go to two pills twice a day, and three pills in the evening. The info about Esbriet does warn about sensitivity to sunlight as a side effect, but I learned the hard way that you have to be really careful.
Thanks for all you do; I don’t post much, but get a lot from reading regularly.
-
Hi Christie: Thanks for your comments. I do have binoculars for birding expeditions but keep an old pair by my chair for feeder birds. Bird photography is not my thing; so many people now doing it, sometimes with excellent results. Never enough birds in my life!