Does anyone else who has Pulmonary fibrosis have trouble working out if they have an infection?

Twice I have had an infection bad enough to get me into hospital and keep me there for two weeks. Each time my overall health has deteriorated and not come back to its previous level. I am told that as soon as an infection starts it must be hit hard with double dose antibiotics for at least two weeks-otherwise more long term damage is sustained. My problem is being able to tell when this is happening. Unlike COPD I do not have a productive cough. Because of the medications I take to damp down my immune system I rarely show a temperature. All I know is - I feel more unwell - more breathless and as a result cough more. I have an emergency supply of antibiotics but sometimes hesitate to start them.

At the moment I am feeling dreadful but is it this hot weather which I am finding difficult to tolerate?

Any experience/suggestions gratefully received.

Maggie

8 Replies

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  • Hi Maggie, I have PF and Sarcoidosis and have oxygen to help me when active. I am lucky I have only had one infection which put me in hospital for three days a couple of months ago. I have felt worse since the infection and my breathing is a little worse as well. The same as you I don't have a cough but I think the weather at the moment is effecting me. I stay clear of anyone with a cough or cold and would not go on a bus under any circumstances (lol). Keep you chin up and lets hope this weather comes to an end soon. Paul.

  • Thanks for your commiseration freckboy. I must admit I am hoping for an end to the hot weather - feel very guilty in doing so because I know families are on holiday .I must admit Spring and Autumn are my favourite seasons -sunny, crisp days are the best!

  • Hi Maggie - my husband has PF and heart failure; it is very hard to tell when an infection is coming, in his case they come on very suddenly. I know to look out for trouble if he gets very 'bubbly', as like you, he's not got a productive cough. (Having said that, he is deteriorating these last few weeks, and now sounds 'chesty' whenever he coughs). My only guide is when his temperature goes up - that happens very quickly, his temperature goes from normal to 101 in 40 minutes, with violent chills and nausea - then I give him Doxycylcline antibiotics and 30mg prednisolone - last time he recovered a lot quicker than usual, because I didn't wait to call anyone out . I've always got a stock of rescue meds on standby, but he is always worse after an infection than he was before. He is pretty poorly with it all now, the heart failure as much as the fibrosis I think.He's on oxygen 24/7, 2 litres at rest but even on 5 litres he can only walk about 15 yards. Just today I have managed to wean him off the Prednisolone - been trying to do that with reducing doses since Christmas, but then he's had 3 infections since then and every time we start again up at 30mgs.We shall see what happens ! The key to keeping him OK seems to be lots of diuretic - his ankles don't swell much, but fluid backs up into his lungs, due to the type of heart failure he has. This hot weather has really been bad for him - I bought an air conditioner for the lounge (or fridge as we like to call it now !) so at least he has a refuge on the really hot days. I do sympathise with you - it's a tricky one . Take care. Gill

  • Hi Gidge (Gill)

    Sorry to hear your husband is so unwell at the moment. Does he have a holding dose of prednisolone? I ended up in hospital the first time with an infection when I tried to reduce my pred below 10mg per day. I wanted to try to reduce the weight gain I had experienced since starting them

    so with my rheumatologist's agreement started to cut them back. I got as far as 6 mg and ended up in hospital for 12 days- needless to say I am now still taking 10 mg daily.

    Really at the moment it is the heart problem with the pulmonary hypertension causing the acute problem. Like your husband I am now taking two diuretics to reduce my water retention. I have noticed that when I am feeling unwell my ankles /legs swell more and have not gone down in the morning and my weight goes up by a few pounds.

    The trouble is, as I don't show a temperature it is even difficult for my doctor to tell if I have an infection without a blood test. I had been to see the doctor before I ended up in hospital last time - she thought it wasn't an infection but possibly a reaction to a larger dose to sildenafil I had started taking(not an unusual response).In the event I was in hospital within a few days with pneumonia being treated with 3 antibiotics. It was 4 days before they could stop the infection getting worse.

    Sounds like the air conditioner might be a good idea- any particular type you would recommend?

    Maggie

  • Hi Maggie - Keith takes 80mgs of Furosemide a day, and 25mg of Spironolactone. We have been told the diuretics are the key to keeping him going ! I give him half the Furosemide very early in the morning, (sometimes 5am) and then he has a cuppa, but nothing to eat for at least an hour. I find that way it really works well, and he is safe to go out in the morning without being 'caught short' Often it is almost a litre he gets rid of by 9a,m. The second dose he has after tea - I figure if it gets worse I can give him that one on an empty stomach too. (Not sure he would thank me!)The only trouble is Furo. can strip out potassium, he was very low last week when a blood test was done so he's been taking about 4 times the usual dose of potassium replacement per day for 10 days - blood test shows now OK, so we are going to see if he needs the meds. regularly. He takes the Spironolactone after breakfast - the heart Failure Nurse upped it to 25mgs from 12.5 last week, because his legs were still getting a bit swollen. We were told to weigh Keith every morning (after a wee, before any food or drink) and if he goes up 4lbs in 2 days then to consider more diuretic. I am assuming he has pulmonary hypertension - 'significant diastolic dysfunction' was last we heard.......

    We've been trying to get him off prednisolone because he is diabetic, and it plays havoc with blood sugars - he does seem more 'chesty' lately, but whether that is due to the reduction I don't know - not sure the GP really knows either. We haven't seen him since May, due to go on the 12th., keeping fingers crossed nothing occurs in the meantime.

    For the last 3 weeks or so Keith's slept in his recliner - even though he has an adjustable bed, he can't cope with laying back. We are waiting for an OT to call round to discuss a hospital bed.

    Air conditioner - I just went on the web, looked at some reviews and bought one from a company called Aircon direct, but I saw the other day that the one I bought has sold out. I paid about £250, and it has been worth every penny. I can make one room nice and cool, he is much more comfortable.

    Take care ! Gill

  • I have copd&pulmonary fibrosis the weather doesn't make any difference to me but some days I feel terrible and have to go back to bed this can happen two or three times a week.doesnt mean I have infection but see dr if you think its infection iam at severe stage

  • Hi teaky 19

    Cold weather doesn't affect me - I know it does affect some with COPD - it did my father. Sorry to hear you are so often unwell- hope you have someone to look after you when this happens.

    Maggie

  • I have very severe emphysema and get similar to teaky19. I can't always tell if it's an infection or just the weather.