gloria-m-wheeler
Forum Replies Created
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Thank you for your response!!! Do you track your O2 sats while swimming. If so, how do you manage to do so? O2 sat monitor poolside or ??
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I do need supplemental o2 to exercise. The one activity I’ve found that I can do without O2 is swimming. I’ve always loved to swim and while on vacation with my family asked my daughter to standby with my O2. I took the plunge in a warm salt water pool and was able to swim back and forth without any shortness of breath and NO oxygen. I am currently awaiting the reopening of a warmer indoor pool & am excited to give it a go!! Has anyone else out there had a similar experience? It was totally amazing and made me feel alive and “normal” again. Does anyone have thought (other than buoyancy) on why this worked?? Thank you in advance for your thoughts & ideas!!
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I find that physicians are unaware of macrodantin (Nitrofurantoin) role with IPF. It may have actually caused my IPF as I was on long-term therapy for chronic UTI’s. Yet, I continue to have it prescribed for my UTI’s. I always ask them what they’re prescribing and find Physicians are very willing to switch RX once I explain that it may have been a (the) causative factor in my IPF. I have not found metropolitan physicians are any less likely to prescribe it. The beauty of a rural Dr is that once he is educated about the connection, he’ll know not to prescribe in the future. I do not know of other antibiotics connected to IPF.
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I believe airline requirement is 2x flight length of battery life. Not 2 times amount of oxygen. I have used two INOGEN’s to increase O2 supply utilizing two nasal cannulas. Both would have to have twice the length of flight worth of batteries. Car travel would be more doable and think you could set up respite care in a city half way in between travel cities to give you both a break. You would need two machines with a power source—or O2 tanks which if purchased thru nation wide provider could be exchanged as needed enroute. Planning would be nightmarish but doable. Personally, I’d arrange tank exchanges as needed ahead of time, a respite stop mid journey. I’d use inogen and tank (extends tank life) with two nasal cannula’s utilizing cars power source while traveling. My ideal mode of operating would be two INOGEN’s both with their own cannulae with a tank for back up. I would pick a route with the least elevation. Again, Respite set up midway. I find using two cannulae to be quite comfortable. I’d then write up plan and submit to her primary physician. I think it is doable; and, while labor intensive, a wonderful opportunity to spend one on one time with her.
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Wondering where you live, I might contact my electric folks. Im finding I am less cold tolerant. It is hard on the Electric AND Fuel oil bills.
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We just need to keep doing what ever we can. It is sometimes so disheartening. Thank you for your response!!
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Thank you
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Thank you for your response!!
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I cannot imagine taking flaxseed oil along with my ofev. Flaxseed oil and seeds gave me diarrhea before my diagnosis. I find I need to eat protein and like many others need to take my medication mid meal. The pharmacist strongly recommended protein foods with the medication. He went into an explanation of why protein foods are best with it. It had something to do with effects of OFEV on digestive tract cells. I find I can no longer eat salads. I suspect we each need to find what works for us and that it will be different for each individual. I have not had any problems eating out, though I am very careful about what I order. I also never eat more than about 1/3 of a serving and bring the rest home. As long as I don’t over eat and avoid salads, I find eating out enjoyable and without detrimental effects on my breathing or sense of well-being. It has taken me almost 2 years to find what works for me. Hoping you find a routine that works for you and that you can continue to enjoy meals out on occasion
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I do use power plugs on AK airlines without problems or questions. I have not flown other airlines.