Pulmonary fibrosis

[Issma]

Good morning to you all. I am posting for the first time, hope I don't mess up or sound silly. My husband was diagnosed in 2006 with pulmonary fibrosis and although we regularly attend the royal brompton for his care I feel very isolated and uninformed. Really feel as though we've just been left to guess our way through this terrible nightmare. It breaks my heart to see my lovely strong man just going from day to day living on oxygen and avoiding people in case they have a cold etc. Well enough self pity, just want to say a big Thankyou for letting me into the fold and its good to hear all your tips. Many thanks and happy St Patrick's day x

[Jessy11]

Hi Issma, you're very welcome here.

Sorry to hear about your husband.

I'm afraid I don't know anything about Pulmonary Fibrosis but there are members with this condition who can answer any questions you have.

Of course you won't mess up, just chat to us as if we're sitting next you.

Take care 🌹

[Hidden]

Morning Issma - Welcome to the site! I care for my husband who suffers with severe COPD but I can acquaint with all the fears. I have found this site so useful especially when he has been very ill. Lots of good advise and kindness. Lots of love to your and your husband xxx

[sassy59]

Welcome Issma and you need never feel isolated again. Xxx

[Northernfi]

Hello Isma, my husband was diagnosed with Idiopathic Pulmonary Fibrosis 13 months ago and it is a horrible thing to see someone you love affected in this way. The diagnosis was later changed to NSIP, but by that time we had joined the local IPF support group and kept going. They have monthly meetings and we've been to some very good talks as well as social outings. Although we've not managed to meetings during the winter, we get a catch up email, so don't feel too out of touch. I've found it helpful to speak to other spouses/partners and it certainly helped me feel a bit more 'normal' about the situation, as well as finding out what's available in our area.

Support groups are listed on the BLF website, so if you do have one in your area I'd definitely recommend getting in touch with them.

[Mendy]

Hi Issma, i m very sorry to hear about it and i understand u very well. My husband also was diagnosed fibrosis about 1,5 years ago. I m also very scared and feeling lost. 

[Mendy]

Hi dear Issma, thank you so much for being helpful. I am not english, so maybe i dont use correct words sometimes, sorry about that. You are right about doctors. But i dont leave the doctors room untill he doesnt answer my questions, of course i do understand they dont like explaining all the details to people who are far from medicine, not to waste their time.

I do feel alone and lost, but i dont show it to my husband. I ll try to do everything i can. We need to be strong! I know we can!

[Mendy]

Issma whats your husbands PF caused by? Did they do you a biopsy?

[Mendy]

Issma, really feel sorry about your husband. He was fitt all his life and now he cant do most of the things. 

So does your husband have IPF or just PF caused my someth u dont know? With PF people can live longer( i hope) if they are on treatments. I dont care even if my husband ll not be back to a normal active life like before, i will look after him all the time. I just want him to live!!!

[Mendy]

Issma, my husband still works. His fybrosis is not IPF, its his own immune system works wrong.

[Mendy]

Issma, why doesnt your hubby want lung transplant??? Its a chance to live and it would be excellent if he uses that chance. Not many people are offered the transplant but they wish to have that chance. I hope he will change his mind and agree while he is young enough for it.

[Mendy]

I m sooo sorry to hear it(((( 

[Hidden]

G'day Mendy & Issma

I have been reading your posts with interest.

I am a carer/husband for my wife ,Susan, who was diagnosed with IPF almost 2 years ago. We are on the Tx waiting list at the Alfred hospital in Melbourne Australia.

Issma, I am so sad that your hubby cannot have a Tx, even being on the list is pretty hard, can't leave home without the cell phone, no holidays, visits to the rehab group twice weekly, Hospital and Dr's visits weekly and waiting for "That" call. And there is no guarantee that a donor will become available in time.

At least we all have our other "Half" today and that is a gift. I cannot look at the future,so I concentrate on today only.

Susan can still maintain her daily requirements,albeit on o2 during the "out of bed times" but does not require it upon retiring.

Do either of your husbands suffer with the coughing attacks?

Will (Australia)

[Mendy in reply to Hidden]

Hi BurraboyEasty, sorry for late reply, just seen your post. I read your story and i m very sorry that it happened to Susan. You remind me myself, how much you love and care of your partner and afraid to lose her. I wish Susan ll get that call very soon. And after a while you ll both forget about IPF , and continue a happy life together.

My husband does have caughing atacks and always did, since i first met him, he said he got asthma( which was diagnosed by his GP, and which was wrong). And he always was allergic to flowers, birds. Especially every spring. That i think was the start of his disease.

[Hidden in reply to Mendy]

Thanks for your reply Mendy

As I say quite regularly  None of us wants to be on this rocky road,but here we are. I guess what really matters is how we adapt,accept our lot and deal with it a best we can.

Staying positive is the goal, but at times it is very difficult,especially when one of these coughing fits occur.

No matter what the outcome is for us, I do not think I will ever forget IPF or the "Beast" as I call it.

I spend a fair amount of time each day researching and learning about it and I am becoming more alarmed to think the cause could be genetic, Just like prostrate cancer is in men.

How many in past generations have passed from IPF and have been misdiagnosed.

From the numerous testimonials I have read the common denominator seems to be ....  My brother, my sister, my mother ,uncle,father, have died from this disease. There is a university in the USA calling for blood samples  from family members of IPF sufferers, maybe some good will come of this, but how to fix the problem?,unfortunately IPF seems to be at the bottom of the money barrel with respect to research 

best wishes

Will

[Hidden]

Thanks Issma,

 I have come across many who opted for "Quality of life" as opposed to Tx. In reality it is their decision, which path to travel on,but for the family it must be extremely difficult accepting this.

Here in Australia we are fortunate to have one of the world's leading Lung hospitals, with 81 Tx's in 2015, only one soul did not make it. Already this year over 25 have had a new lease of life.

I have read of some botched transplants in the USA, scarey to say the least, so you can see why some souls do not want to take the chance.

Coughing fits are hard to take ,watching your loved one gasping for air and not knowing if they will come out of it. The one thing we have learned about this disease is that what works for one may be useless for another.

This is a rocky road none of us sufferers or carers want to be on,but this is the hand we have been dealt. I guess all we can do is pray,hope for a miracle and to be there for our loved one.

GOD Bless

Will 

[Adevbrat]

Hi Issma,

Greetings!

My father has been diagnosed with IPF last month. I am from India, tried to find a blog which deals with people fighting IPF, stumbled into this one.

Sorry for the pain which your husband is going through. Hope better days are ahead.

Currently my dad is taking Pirfenidone drug along with 16-18 hours oxygen support. I wanted to ask what drug has the Doctor recommended to your husband.

Also have you come across this link pivotalhealth.info/new_pulm.... They claim to cure it. I am looking for more reviews on this. not sure if their claim is correct.

Take Care!!!

[Adevbrat]

Thanks Issma.