saving my dad

[Timslungs]

Hi all! My dad was recently diagnosed with Pulmonary Fibrosis. He is only 64 years old and last year this same time he was in great health! Drs are unsure if it’s IPF or another severe form of pulmonary fibrosis. He had a lung biopsy that came back inconclusive. He relies on full time oxygen and coughs constantly- hardly able to talk or catch a breath most the time. Dr wants to run tests to see if he is a candidate for a lung transplant. But running out of time…dr said without lung transplant he doesn’t think he can keep him alive for even a year. Looking for successful treatment plans. Has anyone heard of treating PF with Food grade hydrogen peroxide? We are willing to try anything Ofev and prednisone are seeming to make his condition worse.

[Alberta56]

So sorry to hear that your dad is in this state, at such a young age too. I can only send best wishes, but there are people on this forum with pulmonary fibrosis, who I hope will be along soon and talk to you about their own experiences. xxx

[leo60]

Hello, I'm sorry I have no knowledge with which to advise you, just my love and thoughts. xx

[Caspiana]

Hello Tim. I am sorry to read about your dad. I have read about this before. Nebulizing hydrogen peroxide is dangerous and is not recommended. There simply is not enough evidence to support it's use. I am guessing you have already run this by his doctor and was told this.

If they are willing to test him for a transplant I would be quick sticks about it. It is not easy but it is really the last option for those of us with rapidly progressing lung disease. It is however a treatment and not a cure. I had a transplant in 2019. There were no other avenues open to me.

Best wishes to you.

Cas

[Stanelli]

so sorry to hear this, hoping your Father will get a transplant soon.

[peege]

I'm so sorry I cannot help except to suggest you use the search bar for posts & their replies regarding PF &/or IPF, also lung transplant and hydrogen peroxide (my husband used it in an attempt to cure/curtail his prostate and secondary bone cancer. He spent 1000s on it as it came from America). Personally I wouldn't touch it with a barge pole.We had a member Dallio who was incredibly driven to fight it with daily exercise both pre and post oxygen use. He too was on the transplant list.

Wishing you and your dad Tim the very very best

[Mellywelly]

I am so sorry you and your dad are going through this, and to have a diagnosis inconclusive it makes you want to scream and say keep testing till it is conclusive. All I can say is keep at em as I had to with my dad. Good luck and best wishes to you and your family xx

[Patk1]

I hope yr dads under the care of an IPF consultant at the hospital.some people r on low dose morphine to help with breathlessness,anxiety etc. A tspn clear honey is gd at coating the throat,which may help the coughing.id also ask if dad can have an urgent appointment with respiratory physio to see if they can help with constant cough,& suggest breathing techniques.in uk at present,it seems we need to be very proactive in requesting exactly what help we need.not to scare u,but pperhaps talk to dr about palliative care.theres some gd support in our local hospices,respite care, coping strrategies, rehabilitation.also in our area we have home respiratory team IHSS.ours is now ICAT).take a look online.Also Aluk here have a helpline + u can get advice from trained nurses on the phone.[phone] Soz lot of info but i realise the urgency.stay in touch,this is a great forum to give u and dad support.all the best x

[FrostGyre]

What is his diet like?

[Keem59]

I'm so sorry to read about your dad. IPF is an awful condition. I watched my friends husband with it. They made lovely memories with him on good days. I also read that Katie Prices' mother has just had a transplant.. So hears hoping they can find a match for you're dad ASAP. X

[casey16gatsby]

I have had a double lung transplant and am doing great. With IPF I think it is the best option.

[TiaDave]

is he on prednisone now and is so what is the daily dose? If not, have they said why? My wifes year long condition has been recurring pneumonia, a side effect from the radiation used to treat breast cancer. What does the biopsy say?