Getting used to Idiopathic Pulmonary Fibrosis

[judith1939]

We have been married 56 years and my husband has recently been diagnosed. He is trying to ignore it, and carry on as usual as long as possible. I feel we are going to need support, and I have joined to learn from other people how to help.I have already asked a question but no reply so far! It;s about the best position to sleep in to help you breathe. Advice anyone?

[mrsmummy]

Hi Judith. Welcome to the forum. I don't have any firsthand knowledge of IPF but some of our members do and I am sure they will reply once they are aware of your post.

In the meantime you can read previous posts here.

healthunlocked.com/search/i...

[sassy59]

Welcome Judith, sorry to hear about your husband. I am carer for my husband but he doesn't have IPF. We do have a triangle shaped pillow that is good for helping him to sleep when he has a chest infection.

Hopefully someone else will be on with other suggestions too. Xxxxx

[Hidden]

Hi sorry to hear this. It is good that your husband is carrying on with normal life but he shouldn't ignore it. He needs to takes his meds regularly and follow the advice of his medical professionals as this will lessen the effects of his illness and prolong his life. It sounds like he is in denial. I don't blame him though.

I can't comment on IPF but I know with copd having an extra pillow or 2 helps as breathing is often worse when lying too flat. Also dust mites can be a trigger for breathing problems so ensure you either wash your pillows or buy new ones every 6 months.

Wash all bedding, nightware and towels etc. in at least 60% to kill the dust mites too.

[mrsmummy]

Also, the BLF produce leaflets about many lung conditions. They have a Helpline staffed by trained nurses and advisers. Why not try both?

The number is 03000 030 555 (office hours) and the website can be found at blf.org.uk/

[Salmo]

I have read that if you know which part of the lung is most affected it can make sense to sleep in a certain way or on one side but am not certain if there is any truth in this so worth asking a medical expert.

A partly related issue concerns acid reflux and cough. Many people with IPF develop a peristant cough and in some cases this may be due to acid reflux. For these people it can help to raise the top of the bed to make sure you are not lying too flat when sleeping so that you reduce the amount of stomach contents reaching the top of your throat or lungs.

When my IPF started I had a bad cough that has (touch wood) largely dissapeared since I started taking a lot of drugs to treat reflux (PPI, H2 blockers, Gaviscon) as well as a making lifestyle changes such as avoiding certain foods, eating nothing after 6pm and raising the head of my bed by about 9 inches. No idea if this is a coincidence or which of the changes helped the most but it may be worth looking into this in case reflux is contributing to your husbands cough (and even the IPF). I certainly sleep much better now bed is raised.

The other thing to check is if your husband desaturates at night. In some people blood O2 levels fall during sleeping (obstructive sleep apnea) and that may contribute to cough.

Both long shots but helps to be proactive with this disease just in case.

[GeorginaS in reply to Salmo]

Hi Salmo I was diagnosed with Pulmonary Fibrosis last week. For over a year I have been coughing. Multiple visits to the doctors and throughout last year to the hospital too. 3 consultants.

First one said asthma, second habit cough, then last week pulmonary fibrosis. I don't cough at night or when walking., usually 5-10 miles a day. I don't cough playing badminton or Zumba or on the treadmill walking at 4 mph.

For months I've told consultants and GP's I cough on sitting-up in the morning as well as during and after eating whilst sitting down. My CT scan shows damage at bottom of lungs and for a while I've mentioned it's positional coughing. No one really listened!

I'm now taking lansoprazole and taking water to bed. Before I sit up I drink my water and take the tablet. So far a little improvement. I find lying flat on my back helps.

I'm 64 and female and until last week I thought I was generally in good health. I can't get my head round all the things I can do and the diagnoses! My second consultant explained away the marks at the bottom of my lungs were due to not taking a deep enough breath when in CT scan. My diagnosis doesn't seem to match pulmonary fibrosis symptoms. My oxygen level on a spirometer is 99%. It's all very confusing. I do think you're right that the ability to sleep depends on where your lungs are damaged.

[Salmo in reply to GeorginaS]

Getting a definitive diagnosis always seems so hard with these type of lung diseases (ILDs) if thats what you have. I've read so many stories of people having their diagnosis changed, often quite dramatically, so you are right to be sceptical. In your case I would take fact that you do not have obvious signs of lung changes (CT or functional) yet as being relatively good news. Hopefully, the steroid might help at this stage but also worth keeping an eye on the GI issues, especially as steroids can make GI problems worse.

Regarding lansaprazole, it may not be very effective at treating night time reflux and you may need nightime ranitidine (as well as raised bed etc). Symptoms of coughing in morning could just be a coincidence but it does raise concerns that night time acid reflux may be a potential cause of your coughing and PPIs alone are not that very effective at treating this problem (night time Ranitidine and Gaviscon may help). I tend to be a tad obsessed with role of reflux in lung disease/coughing but that's because so many GPs and chest consultants missed my reflux problems for close on 8 years which, from what I know now, seems astonishing. I'd raise this issue with your doctors just in case.

[GeorginaS in reply to Salmo]

Thank you. That's very interesting and useful. I'll discuss when I see the consultant but I'll start taking gaviscon now. I'm going to look up GI as I'm new to this and don't understand.

I read an article about reflux and IPF and there seem to be two views. One IPF is caused by acid reflux and the other IPF creates acid reflux.

I've also managed to find good news stories of people having IPF for many years. A couple over 20!

Thanks again for your help.

[sibkev]

hi welcome i had ipf you wont ignore it long trust me if you dont start to deal with it now i dread to think i ignored mine and did not exercise im now 14 month into lung transplant im doing well but i was down to a few months to live . so for his sake give him a shake smell the coffee and wake up sry to seem so harsh but i dont wont someone to go throu what i did before transplant

[judith1939]

Thank you so much for your advice and help. You are right he is in denial but all I can do is support him through this. Judith