difficulty eating.

[Xrossstich]

my husband has had pulmonary fibrosis for over two years now with heavy coughing bringing up very little phlegm. He also having trouble eating a dinner, he chews & chews but can’t swallow the food, he’s burping constantly, he heaves at just looking at the dinner on the table and says the food is tasteless. Is this connected to the pulmonary fibrosis or something entirely different, a stomach complaint? He had a camera down some months ago where they found polyps which they burst but also sad there was an irritation of the stomach! He’s lost over a stone in weight and where at our wits end, he’s not a big man and now just skin on bones. Our doctor doesn’t seem to understand pulmonary fibrosis and we only had a phone call from our lung specialist. Thank you for any suggestions.

[Caspiana]

Hello there. I'm sorry to read about your husband. I'm no expert, but it sounds like he may have dysphagia or something similar. He really ought to be seeing his lung consultant and I would try to get a face to face appointment as soon as possible. A referral to an ear, nose and throat specialist is definitely in order and soon. I'm sorry I can't be more helpful.

Cas xx 🙋‍♀️🐕

[Badbessie]

My mother in law as similar symptoms. On Friday last she had a Barium shallow which showed that there was some aspiration into the lungs. Like your husband she had difficulties swallowing food etc. She is now awaiting various tests. This can be caused by many things from gastric irritation/reflux to medications etc. As her symptoms become worse when she changed her inhalers the GP is suspicious that that could be the cause. You need to speak with your GP. I would also recommend that you ask to speak to a dietitian to help your husband get the calories and nutrients he needs.

[Ergendl]

Definitely ask your doctor for a referral to a dietitian, and also a speech therapist who will check things like the gag reflex.

If your husband loses more than a third of his body weight in a matter of months without intending to, his body is breaking down the muscles to survive. This isn't good and your GP needs to be alerted to it. Insist on something else being done.

[mike57]

Hello I also have pulmonary fibrosis and they discovered it was caused by reflux into my lungs. I truly recommend you start today something like Gaviscon it will top the reflux and allow you to eat. I actually use Tesco's equivalent as Gaviscon is pricey. I am also on Omeprazole 40mg daily prescribed by my GP. It has also stopped my cough! The longer you leave it the more damage can be done.

In the longer term you must insist on seeing a lung specialist at the hospital. I am under Guys in London and they are great.

[Xrossstich in reply to mike57]

He is under a lung specialist who we speak to (once a year or eighteen months) phone call. He on a reflux drug and takes Gaviscon, Complan & Actimel. Thank you.

[Izb1]

Your really must be firm with your gp and insist on a referral to the hospital. I would also get some of the protein drinks like Complan so that your hubby is getting some nourishment. Once you have been referred chase up the hospital and explain how urgent it is that he see's somebody x

[Xrossstich in reply to Izb1]

thank you .I’ve got him on Complan also Actimel (don’t know whether it does any good). He is under the lung specialist who we see once a year or eighteen months (if we’re lucky) only a phone call last time.

[Oshgosh]

I have lung fibrosis. I struggle to eat- my appetite is poor. Since diagnosis 4-5 years ago I’ve lost over 5 stone.. I have to keep giving clothes away and buy smaller.

I struggle to eat / chew meat. After about 5 mouth fills I can’t chew effectively any more, quite often end up spitting it out . It only give myself small portions. Sometimes I have a ready meal with plenty of sauce? Usually a ready meal Will do me 2 meals

[Oshgosh]

sorry internet went down .my tastes have changed. Does your husband like strong cheese? Cereals with full fat milk are good.

Sometimes I have snacks, rather than a meal . Itdnot as daunting. Is there anything your husband fancies ?

I really miss my appetite take care

[Alberta56]

What this forum tells us is that you need to be persistent with GPs. Keep pestering them, even if you feel you must be a terrible nuisance or that he/she doesn't want to know. Your husband needs treatment NOW. Go armed with a series of requests/ demands, as suggested by the knowledgeable people on this site. Good luck.

[Xrossstich in reply to Alberta56]

we see a Doctor but they don’t seem to know anything about P/F. The specialist said there’s no treatment u till his oxygen get to low 80’s & his is still high 90’s then it’s oxygen & morphine. Thank you.

[BrigidsFire in reply to Xrossstich]

I’d ask to see a different doctor. Ask to see a pulmonologist, and if he already does, then ask to see a different one.

[Mavary]

H! Have you thought of going onto a Pulmonary Fibrosis group. You will find a lot of information on there. My Husband had Pulmonary Fibrosis and like your Husband he only saw a Consultant once a year. I was on The Pulmonary Fibrosis group and I learned a lot about it. Give it a try.

[Xrossstich in reply to Mavary]

thank you, how do you find a pulmonary fibrosis group please. Xrossstich

[Mavary in reply to Xrossstich]

Hi! It’s Pulmonary Fibrosis UK

Or there’s ——-Pulmonary fibrosis carers and bereavers

The Pulmonary Fibrosis will give you people who have this and how they cope. The other group is for the carers but will incorporate some of the information.

Good luck. I could help you more but it’s better coming from new people that have it as there is different treatments than when I had my Husband. I lost him nine years ago. Xx

[Xrossstich in reply to Mavary]

I’m so sorry, I know it’s terminal we were told that in the beginning two years ago. Thank you for your help I’ll look those place. Xx

[Piperava in reply to Xrossstich]

You will find Pulmonary Fibrosis groups on Facebook, cant remember the one I am on off the tip of my head. You will get lots of advice and support from them. My late husband had IPF and I found the group a great help. I am still on the group. You could also give Action for Pulmonary Fibrosis a call, they are there to offer help and support.

[Ern007]

I have " pulmonary fibrosis" and at times can't eat properly. I don't think it's to do with the pulmonary fibrosis - not with me anyway. I was tested by ENT a while ago, and had to eat biscuits while peddling on a machine while being X Ray'd

I have a slow digestion and being food travels slow, it can cause problems - Also GERD is part off it,

it's annoying as I choke at times and have to eat with a glass of water,

This is my experience and may not be the same as your hubby.

[Xrossstich in reply to Ern007]

it sounds very similar to his problem, it’s the constant burping all the time with or without food. Thank you anyway.

[Ern007 in reply to Xrossstich]

Your welcome and hopes he gets sorted, I know how annoying it is.