Xrossstitch

[Xrossstich]

my husband has pulmonary fibrosis, On no medication for it, coughs continuously especially on waking in the morning and brining up a small amount of phlegm. We have an appointment 31st May at Queen Alexandra Hispital Portsmouth to talk about taking drugs that “could” prolong life for a year or two. But the side effects are COUGHING, WEIGHT LOSS & diarrhea. My husband is already fighting coughing, weight loss (he’s down to 8-10) he’s on 2 Fortisip a day, and he’s got early dementia. We have no quality of life, can’t go on holiday or to restaurants, my husband can’t do any hobbies, bowls etc. we can see no point in using these drugs to prolong life unless they can improve our life. Interested to hear what other people think about it please.

[Alberta56]

Sorry I can't help- I have no experience of Pulmonary Fibrosis. Just wanted to offer my sympathy that you are in this sad place and having to make this difficult decision.

[Lee_Scoresby]

It’s only a few days before your QA appointment, so I’d go along and see what they say. Best not to assume that side-effects would be intolerable before any medication is offered.

I cough a lot but the Carbocysteine I take, plus my inhaler, both improve my quality of life. Thinking about it, quality of life is what medicine is all about.

Good luck - I hope it goes well.

[garshe]

I wouLd do anything to prolong life. Life is precious. Every second counts xxSheila

[Izb1]

I can understand how you feel and sympathise with your situation but as others have said I would go along to your appointment and hear what they have to say. Its all down to how you feel about the side effects and I am with you on that quality of life is much more important than how long we live. I hope the consultant can offer some relief for your husband, please keep us updated x

[Patk1]

Is hubby on 02? Pls ensure they do his blood gases as low 02 can cause symptoms of dementia+ anxiety.Hope hubby,and you,are enjoying favourite food treats,with extra calories,sweet treats with cream if he likes I hope appointment is productive. I'd take a list of bullet points of any questions u both may have, points u want to raise, including asking for palliative care - it will help u both & shld give you support. Im sorry lifes so hard 4u at present, as hubbys carer. x

[Xrossstich in reply to Patk1]

Not on 02, I don’t know what it is. He isn’t on any medication for P/F only blood pressure and gastric problems. Plus a small dose of drug for Dementua because he can’t tolerate any stronger drugs. Thank you.

[jackdup]

Not all people experience side effects, or if they do they may not be serious or as serious as others may have. He can try the medication and see if experiences side effects.

[Xrossstich in reply to jackdup]

That’s a point thank you, as he doesn’t tolerate drugs at all it’s a problem. We’ll hear what they have to say.

[jackdup in reply to Xrossstich]

I hope and pray they will find someway to help him and improve your quality of life. Good luck