IPF and diet

My wife has IPF (3 years diagnosed), she is on 24 hour oxygen.

I do all the caring, cooking washing etc. It is a problem finding food she likes to eat. There are two problems , lack of appetite,also difficulty eating because of effort and reduced ability to breath with mouth full. There's always Ensure and Pro cal of course, but it's so samey. So it's mostly porridge, soup,

Ice cream or yoghurt. Do others have this problem.? Any tops?

9 Replies

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  • hi im not on oxygen but do get very breathless, I got stage where was struggling eat due to being out breath, I started having main meal earlier also smaller portions.

    tam

  • ilfa.ie/docs/ILFA_Booklet_N... hi i found this link, part off it says how to loose weight , well ignore that, and read the other part on trying to balance the diet, i hope it helps ,,

  • Is it suggestions for meal ideas you need or raising her calorie intake

    One thing i would suggest is any kind of inhalers she uses make sure she has them about 20 minutes before she eats so her breathing is at its best.....

  • Have you tried milkshakes...when I've no appetite I make a shake with fresh fruit...strawberries at the moment!...then drink it through a straw...sweeten with honey or sugar.

    Rice pudding...comes in tins...custard with a little tinned fruit...Tesco do ready custard which is actually really nice. Fish cakes are easy to eat...

    Fish pie...

    Hope this helps a little xx

  • Hi nobbybunny I have IPF and on 02 for 15hrs minimum at the moment I have been able to make my meals and my husband s but he seems to be the one that needs encouraging to eat healthy. For myself I am on the porridge and toast with eggs boiled or scrambled the odd biscuits also smoothie with vitamin s from supermarkets, evening mostly chicken with jacket potato or mashed with lots of butter. Tinned soup spiced up with bits of chicken and rice with curry and even more chicken. And followed with sponge and custard or anything she may fancy just to get the taste buds working again. An article in this morning s express was about a woman that is 104 and puts it down to her Guinness and crisps every day for the past 60 yrs ) not bad .hey! Good luck

  • Hello NB, This can be no easy task! I would try an eggnog perhaps...to tempt her appetite and I'd make a tasty casserole , then mash it keeping it warm while she's eating it if you can.The little bit of sherry in the eggnog and the smell of the casserole cooking in a slow cooker will help the appetite, for sweet I think a homemade sherry trifle, see if she likes that. It's a miserable time when you just can't breathe and I admire your loving devotion to your dear Wife.

    I think everyone has come up with some good ideas, I hope you'll keep us posted, huff xxx

  • Yes I have IPF.. and much of the time little to no appetite. I'd rather sleep than eat. It's hard to get excited about the energy one uses to eat...not to mention dressing, bathing, and just breathing. I graise all day long finger foods, fruits, vegis, cheese, with at least one meal that I sit with my husband and eat. I try to eat 3 ounces of protein daily and drink water if there is no fluid restrictions. While I know some would not agree with me I was diagnosed 5 years ago and told the average life expectancy is 3 to 5 years everyday is a gift. I was told there is no real treatment for IPF. I have UIP its under the I.P.F umbrella. I am considered a non compliant patient because I refuse to be on antibiotics unless it is verified by elevated wbc and chest xray that I need one. I do not use inhalers that are primarily used for COPD. I have oxygen that I am so post to use whenever I get up to do anything instead I learned what pace to walk to keep oxygen saturation above 93%. I have not quit smoking yet as in studies it's shown to shorten life by 8 months although I have cut down the amount I smoke. I have rescue inhalers of albuterol very rarely use them. I don't think that the success rate of lung transplantation is good enough so I will not do that because of the chance of rejection to just get a couple of years. I have has pneumonia once in the last 5 years and bronchitis twice. I wear a mask most of the winter months when I go out shopping to help avoid illness. Best tip eat all day long small amount. It takes 1800 calories just for me to sit on the couch and watch TV per 24 hours. I wish, hope, and pray for your wife and for you to have the needed strength to continue to fight.

  • As Mandy asks depends whether your looking for meal idea's is to increase calorie count. A little often & a bit of what you fancy helps. If you have time & the energy using whole milk cream & ice cream in milk shakes really helps. Gersey milk & or cream in milk puddings. My daughter adds single cream to full cream milk to increase Oliver's calorie intake. (Oliver has AHC & struggles to maintain his weight) Your GP or Consultant should be able to advise you where to get leaflets from a dietician or if you have an accessible hospice they are excellent with ideas simple recipies etc. Good luck & do keep in touch. Nan

  • Hi everybody,

    Thanks for the advice and sharing your experiences. My mrs doesn't do the Net but I'm showing her your posts, she was touched. We'll be trying out some suggestions! It's difficult making changes in your 60's. We' always done low fat high fibre diet, with five a day and no snacking or grazing. I cut down three years ago from two beers a day to one, lost half a stone without trying and spent three years putting a few pounds back on. So it's really hard to eat little and often especially high calorie stuff.

    Cheers,

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