Xstich

[Xrossstich]

my husband has pulmonary fibrosis, since having pneumonia last November the coughing has got worse and he is bringing up phlegm. He’s now having trouble swallowing food mainly his dinner, he chews & chews the food but can’t swallow it, he recently had a gastroendoscopy with polyps found in the stomach which were burst but nothing in the throat etc. any ideas what we can do to help him, he’s losing weight with it.

[Ergendl]

Ask for your husband to be referred to a dietitian. In the meantime, check out this information sheet from the British Dietetic Association: bda.uk.com/uploads/assets/0...

You will need to start at about Page 3 for the information that may help you.

Wishing you both all the best x

[Izb1]

So sorry to hear of your husbands problems, it is such a worry when you cant find the answers to help. One of our dear members Skischool, who is no longer with us, suffered from dysphagia, he couldn't get any help or treatment for this ( if there is any) you would be better asking your gp to refer you to the hospital and see if they have any answers. I think the meal replacement drinks would be a good way to help your hubby at the moment until you can get some answers. Sorry i couldn't be more helpful x

[Nula2]

I see Ergendl has suggested asking to see a dietitian. I agree and think that would be really helpful for you. I was referred and although my situation is completely different to yours I believe they would be able to suggest the right sort of drink replacement to help get the correct nutrients and calories for your husband. Good luck 🤞🙂xxx

[Hidden]

hi my dad had pf, and he had the same problem he used to drink complan every day with jersey milk as it’s more creamy, he also started eating a lot of cereals too Frosties 😆 were his fave. These were just easy things to swallow, I know by my dad you lose weight he lost a lot, not necessarily through not eating the disease in general I’d say. Hope things get better x

[Hidden in reply to Hidden]

ps a straw used to help drinks go down more easily too

[Bronte007]

I’m a speech and language therapist and I would suggest getting a referral to an adult speech and language therapist who specialises in dysphagia. If you aspirate food / drinks into your lungs because of a swallowing problem this can cause chest infections. I am also interested in the cause of your husbands fibrosis. I have recently been diagnosed with an autoimmune disease which may have been triggered by covid . The ‘pneumonia’ I had may actually have been fibrosis as part of this. Some autoimmune diseases such as myosotis can cause muscle weakness and dysphagia ?

Good luck and hope your husband gets some support soon x

[Xrossstich in reply to Bronte007]

no idea how he got P/F, never smoked, worked in an office. Played football, refereed, rode a bike, played bowls. Both his brothers died of (we think) same or similar complaint and his mother, she’d had T.B. as a young person and we wondered if it was heredity. Mother & brothers were all late 80’s he is 85 now. Thank you.

[Oshgosh]

I have lng fibrosis,am currently on Nintendanib.

I also struggle with chewing food,especially meat.I find that when I chew meat,I produce and choke on mucus.not good if I’m out.

I usually only manage to eat half the meal. I always have a drink available to take with food.

I eat cereal,this gives me ,the milk is good,even though I can’t tolerate full fat milk.

[Xrossstich in reply to Oshgosh]

thank you Oshgosh you’ve explained perfectly, we see the lung specialist on the 15th June (fingers x) I’m hoping he can help help my husband, if he’s hungry of an evening he will have a bowl of porridge or cereal.

[Oshgosh in reply to Xrossstich]

they will both be good for him.good luck with the 15th.x

[Alberta56]

Ii hope you get some answers soon. xx