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Susan Howitt replied to the topic Coughing aftr meals in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 7 months ago
For coughing at any time can e severe but at least it brings up the plegm, I take tiny sips of a good strong quality orange juice with pulp and keep an eye on myO2 levels which drop dramatically when I eat
regards Sue
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Susan Howitt replied to the topic The IPF Patient's Experience with Prednisone in the forum Diagnosis Information and General Questions 1 year, 7 months ago
Morning
I actually would not be without Predisolone. Started off at a 60 mg dose like you but for 2 weeks only, sleep was a problem on a high dose, then weaned down to my maintenance dose of 10 mgs, been on that for three years with absolutely no problems. At first I could eat a scabby dog but now al OK, I am allowed by my doctor to go up i…[Read more]
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
Happy to have made you smile, please do phone back now that you are not in such shock at their original answer.
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
Oh Karen
I cannot believe you got that sort of answer, hope you said something along the lines of, put a pillow tightly over your face and see how long you consider lack of O2 not a priority !!!! grrrrrrr
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
Hi Jill
No insurance increase on either my car or house (same insurance company) BUT I live in France and way out in the sticks so things might be a little more relaxed here The sign on the door is NOT a requirement, just a polite warning in case of fire.
Hope you can get things sorted without insurance hikes. I just had the feeling th…[Read more]
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
Hi
I have only had to inform my insurance company, house & car, that I have large O2 tanks in the house+ 2 smaller ones and one small one permanently in the car. I do have a sign on the front door that Ii have O2 inside
Take care one and all
Sue
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
Hi Jill
I have , a Caire Hi-flow liquid content which go up to 15 ltrs , the other is a companion T P/N 775499-B, also up to 15 lts.
At first the filling up is a bit of a chore, you have to really press down on the filler end and keep up the pressure whilst filling, I count to 20, release lever listen until the gurgling (filling, quick 10…[Read more]
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
Hi Elizabeth
I am in France so my supplies are vastly different to the USA as well. I get what I want and what I need no problems, just have to ask.
To my mind the bigger the portable concentrator the better as you can usually get further, bearing in mind that to my knowledge no concentrator seems to supply more than 3 ltrs no matter what…[Read more]
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
Hi Marianne
I think that is awful that the O2 suppliers can decide if you do or don’t qualify even after a doctors note. I had a POC long before I was on 24h O2, I now have 2 Pocs as my O2 needs are high and each POC goes up to 17 ltspm, the O2 company suggested I had 2 !!! so as not to be caught out by any longer than 2 hour visits. I s…[Read more]
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Susan Howitt replied to the topic Acute Exacerbation and Cyclophosphamide in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 9 months ago
Hi Wendy
Sorry to hear you have had a seeming exacerbation, quite scary aren’t they. I am absolutely dreading the pine pollen season as I am allergic and live surrounded by forest of which quite a goodly proportion are pine trees as this is the biggest area for Christmas tree and timber production !!!
I can sit quite comfortably and maintain…[Read more]
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 9 months ago
Hi Sam
I am in the same position as you, at rest I am up to 92 but the minute I move I drop to 75/69 at my lowest, I up my O2 intake sometimes up to 13 to be able to shower, sadly only twice a week as it takes so much out of me, I have stools scattered around the house (live on my own but my daughter comes in twice a day) to be able to rest on…[Read more]
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago
I get nose bleeds all the time, not gushers but nose bleeds each time I blow my nose. I am on asprin protect agains blood clots so also get random unexplained bruises, predisolone causes these too.
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Susan Howitt replied to the topic Fluctuating Body Temperatures – Cold & Hot in the forum Using Our Forums 1 year, 10 months ago
I have exactly the opposite problem, can’t stay warm, even with these last few days being very warm, 24° I am here in thick jumper and fluffy blanket with hot water bottle !!! Not on any anti-fibrotic
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Susan Howitt replied to the topic Extreme Fatigue in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago
Sorry Wendy, I just sleep through them too. I have found that if I eat something, usually a half cup of a substantial soup, I sleep deeper and better and seem to get through the episode faster. Sorry can’t be of more help
stay safe Sue
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago
On oxygen I have a bubbler so until I went on really high out put never had a problem. Much to every ones horror I use a moisteriser (consisting of glycerine, parrafin and vaseline, prescribed by my doctor for my very dry skin caused by the scleroderma) up my nose now, silky smooth and works wonders for me, in the very tiniest of quantities. I k…[Read more]
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago
Hi Marianne
My oximeter was checked by the hospital during a recent stay and it was spot on this their electronic one, I do know that my other meter is a few ° out so rely on my AVAX one, my readings are all over the place depending what I am doing or have done, takes a minute or two for my levels to go done and about 5 to 10 minutes to get…[Read more]
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Susan Howitt replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 10 months ago
Hi Bill
Yes I am trying to get the Moderna vaccine, seems to be the safest one for me. Can’t even get a Pfizer jab here even if I wanted it !!! Live out in the sticks and in my county there were only 800 jabs (Pfizer available) and all went to Drs and frontline workers. Being in the sticks I am safer, I hope, than most people.
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 10 months ago
Hi Bob
Dear Bob
I had 2 Inogen concentrators one for the home and one back pack and was very very pleased with it but they only go up to a maximum of 3 litres a minute, as you say can be plugged in anywhere but please be aware that it has no filters re viruses etc so you breathe in anything that is in the air around you, scary in these…[Read more]
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Susan Howitt replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 10 months ago
Hi Marianne
Glad you got your Covid vaccine, even though I am classed a critically vulnerable I haven’t yet been able to get an appointment for the vaccine, I am too scared to take the Pfizer vaccine, my friends husband had the reaction I dread the most, he was unable to breathe easily for about 1/4 of an hour during the night following his…[Read more]
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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 11 months ago
Hi Marianne
I am English but live permanently in Burgundy France. I am unfortunately I am at stage 4 following the latest exacerbation, and 27/7 O2, don’t need much when sitting or sleeping, 4lts, but if I move even on max which at the moment is 6, I drop to 55 blood oxy, NOT good so have to have extra bottle that I can wheel around as a ba…[Read more]
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