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Ann Garner replied to the topic Deep-breathing exercises in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
Trying that one and simply blowing up balloons and playing harmonica a bit. All much harder recently
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Ann Garner replied to the topic Deep-breathing exercises in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
The breathing exercises become so much more difficult and stressful as the IPF progresses. Try for as long as you can.
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Ann Garner replied to the topic Sudden weight loss in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago
My husband is 83; finally diagnosed with IPF 3.5 yrs ago & been on Ofev for 18 months. He’s 6ft and down from 13 stones to 10 st 5 lbs with severe muscle mass loss. He has a cough and runny nose which doesn’t help his reduced appetite from the medication. Resultant lack of energy means reduced exercise which is not good. We live day to day with…[Read more]
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Ann Garner replied to the topic Ofev UK in the forum Ofev (Nintedanib) 1 year, 5 months ago
My husband has suffered severe weight loss due too the ofev. He has had numerous tests to rule out anything else so we are left using Ensure and tempting the appetite as best we can. He takes 1 Lorazepam each morning and is currently not having diarrhoea problems. All best wishes to everyone suffering with this awful disease.
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Ann Garner replied to the topic Ofev UK in the forum Ofev (Nintedanib) 1 year, 5 months ago
I have put a reply out there but unfortunately not here. Hope you can find it on the Forum. All best wishes.
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Ann Garner started the topic OFEV UK in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago
My husband was diagnosed with IPF nearly 4 years ago and has been on Ofev 16months. His starting FVC was 65% but is now 49%. They say Ofev will be withdrawn when lower than 50% so maybe at next appointment? He takes 1 Loperamide early every morning which helps avoid diarrhoea. He suffers with severe rhinitis and an intermittent cough. He uses…[Read more]
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Ann Garner replied to the topic Started Ofev…one week in now in the forum Ofev (Nintedanib) 1 year, 10 months ago
Thank you Bob. Spoke with the Dr today and will be reducing dosage next week.
John
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Ann Garner replied to the topic Started Ofev…one week in now in the forum Ofev (Nintedanib) 1 year, 10 months ago
I hope you continue to manage the Ofev without the awful diarrhoea. My husband had been taking it ok for 9 months but now is getting the diarrhoea at some point every day or so. He takes the Loperamide to help this side-effect but has lost a significant amount of weight and so his appetite has suffered. Good luck with the medication.
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Ann Garner replied to the topic Let's Talk About the Word "Caregiver" in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 1 month ago
Over the last 3 years I realise I have become my husband’s carer first and wife second which makes me sad sometimes. I am very lucky because he’s so grateful for my support and I try not to feel cheated out of the fun and time we had planned together; we take each day as it comes, helped probably by the COVID restrictions we’ve been under for so long.
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Ann Garner posted a new activity comment 2 years, 1 month ago
Hi and thank you. As a care giver I am constantly thinking about this awful condition and find some comfort in reading how resiliently people manage their lives.
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Ann Garner became a registered member 2 years, 1 month ago
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Welcome to the PF forums Ann, we are happy to have you!
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Hi and thank you. As a care giver I am constantly thinking about this awful condition and find some comfort in reading how resiliently people manage their lives.
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I was a caregiver too, but my mom has now recovered from her lung transplant. I know how stressful it can be, but there are a lot of hopeful stories here. People sure are tough. There are a few subforums just for caregivers too, if you find yourself needing space to talk. Also, have you checked out our columns? Both Emma (Emotional Support…[Read more]
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I was a caregiver too, but my mom has now recovered from her lung transplant. I know how stressful it can be, but there are a lot of hopeful stories here. People sure are tough. There are a few subforums just for caregivers too, if you find yourself needing space to talk. Also, have you checked out our columns? Both Emma (Emotional Support…[Read more]