Hypersensitivity pneumonitis

[leannagoddess]

My partner has been diagnosed with Hypersensitivity pneumonitis

I just wanted to see how people live with it and try to remain positive and what hobbies can they do and how to love their life with it

It's very sad seeing him unwell and depressed.

[alunrob]

Hello leannagoddess,I too have hp as a result of inhaling very old chicken dust.My tubes were burning for 18 months and made about 10 visits to the doctor-solution was paracetamol!!! Seven years later and for the last 5 years,I cannot tolerate dust,paint,car fumes etc.After exposure I get lung pain which begins about 4 hours later and,in spite of Fostair, sometimes lasts for a fortnight.Then I use increased Fostair and cocodamol.In my extensive experience,GPS will not prescribe anything effective for this.I 5hink only specialists are geared up to prescribe inhaled steroids which go straight into the lungs to stop the inflammation.You NEED a specialist or you are likely to get nowhere.Rare condition which GPS seem to know nothing about.Either get referred urgently or make a private appt at the Spire with a specialist.Gp may prescribe oral prenisolone which is SYSTEMIC and in my experience is less effective and is certainly more dangerous .long term.See details of Prednisolone and Fostair and similar on web.Avoiding all triggers become an almost full time psychological problem.In my car,ac on with rec ycle is effective.Get ac system checked with a new filter.Ask again,I will always help.Best wishes,Alun.

[leannagoddess in reply to alunrob]

Thank you very much for this. We have been referred to a specialist in London now. It really isn't a nice thing to go through watching my partner feeling down and not knowing his life expectancy/long term effects. Thank you very much for your words. Wish you well too

[alunrob]

Hello leannagoddess,my second message.Inexperienced on site.Trying to ensure we stay in touch.Try entering hp on search.Also 2greys has posted excellent information on this.Will try 2 keep in touch,all the best Alun.

[leannagoddess in reply to alunrob]

Is 2greys a member?

[alunrob in reply to leannagoddess]

Hi,he was probably the most esteemed and knowledgeable member on the whole site but for reasons that none of us are aware he was banned,It's a great shame and a loss to us all but I suppose there must have been a cogent reason.You can find what he contributed to hp under the search for hp. How will your husband get to London if he has hp? Masks;I have been trying to have a life with this disease using a pp3 (highest) level mask. Not a covid mask! Even at this level of protection,very fine dust still passes and causes me pain. Best masks are probably made by 3m and Drager,not Chinese from web,but even these at £35 each are not completely effective. I'm having a bad few weeks at the moment.increasing the Fostair,using a little cocodamol, trying to avoid a bloody mouth through brushing mouth,cheeks,tongue,throat.Get right to the back until you gag.Best toothpaste for mouth is prob bicarbonate-Arm and Hammer. Then swill with salt water.Anything to avoid the bad effects of steroids. Biggest thing of all is to avoid triggers like the plague-but if you want to have any life outside the house it's difficult. Exercise is vital and sometimes makes me feel a bit better.Treadmill in the house?Walk where there is no traffic? We all continue to learn strategies to avoid triggers. If your husband is depressed,DON'T just endure it.There are lots of very 3ffective treatments for the awful anxiety and sometimes depression which come with this illness.All the best from Alun.ps.I don't know how to do paragraphs on this tablet!!!

[leannagoddess in reply to alunrob]

Oh ok thank you. I have managed to find lots putting in HP in the search and saw some previous comments and good advice he put. I drove my boyfriend to hospital to avoid trains. Exercise he's doing small walks around the duck pond we have here. Nothing more than that. We are very new to this so getting as much advice and I'm doing as much research I can for him. Going to keep looking now on here

Thank you

[alunrob in reply to leannagoddess]

Hello again,do you find that you can protect him from road fumes by engaging the ac system and using the recycle button.? I have found that keeping to fairly short journeys,5miles or so,I can travel a bit but avoid causing another crisis.However I have to really spend most of my time in my house.Unfortunately there are triggers e very where .You are doing well and should,as you are doing,learn as much as you can about this condition.Chin up and very warm regards from Alun.

[biotechmom in reply to leannagoddess]

FYI, The duck pond could be a very big trigger. I have HP and even though I did not test + to bird feathers, my pulmonologist who is an HP/ILD expert said no feathers in my home and to avoid areas where geese/ducks etc are. Just sharing. It’s a tough diagnosis physically and mentally, as you can tell. Do you feel you got advice like I’m sharing when he was diagnosed? And did they find his triggers on testing? None were found for me so I’ll likely be on meds very long term. You’re a great partner!

[leannagoddess in reply to biotechmom]

Thank you about duck pond advice that makes sense. No he's not been giving the best advice or treatment of really. He hasn't eve been given an option to be tested to see what may trigger it like feathers. But we are now being referred to a better hospital in London.

It is a tough thing mentally and physically on you him and loves ones

[biotechmom in reply to leannagoddess]

If you'd like I can send you some links later on tonight that helped me educationally. I think the feathers exposure is a big one. It's really up there with mold, neck and neck, as most common causes of HP. Hope that helps steer him away from the pond. Let me know if you'd like the links. Take care.

[leannagoddess in reply to biotechmom]

Thank you and yes that would be great.