Two weeks ago my husband was diagnosed with cryptogenic pulmonary fibrosis,can someone tell us what this means

I am so so sorry to hear this.. I just lost my sister January 27th to Idiopathic Pulmonary Fibrosis. which is the same as your husbands but totaly unknown cause.. hence the idopathic..
I wish I could tell you something positive, My sister was diagnosed about 4 years ago.. they said she had 3-5 years and she made it 4.
There are no cures or really even treatments that do anything much for Pulmonary Fibrosis.. It will go from shortness of breath to severe pain..
The way the pulmonologist explained it to us is the lungs harden and become like concrete.. in the end stages there will be honeycombing.. where there is nothing but tiny holes for the oxygene to go in... Umm.. My sister was on oxygene 24/7 for those 4 years. it got to where just going to the bathroom was a major chore for her.. she would have to rest.. we had to get a bedside commode eventualy and even that got to be to hard for her in the end.
She passed away less than a month after we were able to get hospice..
They are coming out with newer ideas for treatments so don't give up hope yet though.. Its a terrible disease.. I wish to goddess I could tell you it would be ok that the doctors could fix it..
My sister had to take morphine regularly for pain.. like i said 24 hour oxygene.. breathing treatments, steroids.. they tried everything.. really it just prolonged the agony she was in.. She used to scream and cry at times the pain was so unbearable..
There is no known cause for sure for it.. and it is always fatal.
I am so very sorry, I am in tears just knowing what you have to go through..
Please email me if you need someone to talk to through this, your husband can as well.
The disease does progress fairly slowly which I guess is something on the plus side.
It isn't the lungs that finaly take the person.. it is the lack of oxygene.. my sisters resperations got so high when she passed away the hospice nurse couldn't keep up with them. They pass from either a heart attack or stroke when the lungs no long can pump oxygene..
What happened was my sisters heart took over trying to breath for her and finaly it gave out..

Make sure you get the BEST pulmonologist you can find.. please..Also when Lynns health started to go downhill bad.. she was able to get full disability as it is a terminal illness.. that will help with all the doctor bills.. and there will be a lot of them..
They will probably want to do a biopsy as well.. and luckily it seems you caught it early, it took my sis so long to get her disability.. that she was so bad off when they did biopsy we almost lost her then a year ago.. she was in the hospital on resperator for a full month..
If you pray.. pray daily.. I will send positive energies your way..
Goddess Bless.. again I am so sorry..

ps if you do not have insurance yet.. please contact the pulmonary fibrosis organization.. they helped my sister to get to a doctor initialy.

pss.. also if your husband is young and otherwise in good health a lung transplant is possible.. there are great risks involved and it will only buy him more time.. but it is something to look into.. My sister refused saying the risks and amount of time it would give her just wasn't worth it..

psss. sorry I keep thinking of stuff.. ask at the doctors office about local support groups.. it is really helpful, my mother, daughter and I used to go with Lynne and it is good to have support from people in the same situation..
My sister was 46 when she passed this January and 42 when she was diagnosed..
This disease doesn't choose by age, race, income level.. its not predujust at all.. affects people from every class, smokers, non smokers.. my sister did not smoke.

Hi again Dee.. its 8 pm and I have been thinking about your post all day.. I know it is very scarey to hear this stuff and I just wanted to make sure your ok?.. PF is a very scarey thing to deal with.. please know I am here for you..

Give this link a go:

http://www.patient.co.uk/showdoc/2306903...

Hope you feel more reassured by looking at this.

Cryptogenic fibrosing alveolitis is a serious disease that causes inflammation and scarring of the alveoli (the tiny air sacs of the lungs) and lung tissue next to alveoli. The main symptom is shortness of breath that gradually gets worse. The cause is not known. Treatments include steroids and other medicines which reduce inflammation.

You may find this website helpful.

http://www.patient.co.uk/showdoc/2306903...

I have no idea - but at least you now have a name for his symptoms!

Now for something a little more constructive - contact NHS Direct and ask them to send you some stuff. They are very useful for things like this!

Good luck with his diagnosis.

try looking at these sites they tell you quite abit about it.

www.virtualrespiratorycentre.com/disea...
www.health-reports.com

Hope they help you.

I'm very sorry to hear it, + even more sorry that you have to post such a question. The doctor who gave your husband this diagnosis should have explained it to you both in detail at the time. Shame on him/her.