IPF. Scarey and not sure what to expect.

[Gracie]

Idiopathic pulmonary fibrosis (IPF) is the most common type of pulmonary fibrosis. It is a disease that causes scarring (fibrosis) of the lungs. The word "idiopathic" means it has no known cause. Scarring causes stiffness in the lungs and makes it difficult to breathe.

Anyone here familiar with this disease? And if so...what helped you cope? MrGracie has it. It's not going well. The lung doc put him on OFEV, and since he began the drug, he has lost his appetite so I stuff him with smoothies. But his depression is worsening too. I don't know if he has looked it up on google, but....his life span once diagnosed is 2 to 5 years..maybe less. On OFEV, it could go to 11 years but I guess it depends on how bad the IPF is. I HAVE googled....but do not discuss it with him because he has more anxiety panic attacks when upset. He lives in his bedroom now. Rarely comes out except to get in the fridge to grab a fruit drink or get a banana I keep stocked on the counter. He is on anti depressants too. The only time he goes out of the apt itself is to the doc for appts. In short..its not looking good.

It would be helpful to find out if anyone here is suffering the same thing and what they are doing for themselves to try to live a normal life...or those who have a friend of family member that has it. I'd like to try to uplift him with stories from others, if I can.

 

[night_son]

Idiopathic pulmonary fibrosis (IPF) is the most common type of pulmonary fibrosis. It is a disease that causes scarring (fibrosis) of the lungs. The word "idiopathic" means it has no known cause. Scarring causes stiffness in the lungs and makes it difficult to breathe.

Anyone here familiar with this disease? And if so...what helped you cope? MrGracie has it. It's not going well. The lung doc put him on OFEV, and since he began the drug, he has lost his appetite so I stuff him with smoothies. But his depression is worsening too. I don't know if he has looked it up on google, but....his life span once diagnosed is 2 to 5 years..maybe less. On OFEV, it could go to 11 years but I guess it depends on how bad the IPF is. I HAVE googled....but do not discuss it with him because he has more anxiety panic attacks when upset. He lives in his bedroom now. Rarely comes out except to get in the fridge to grab a fruit drink or get a banana I keep stocked on the counter. He is on anti depressants too. The only time he goes out of the apt itself is to the doc for appts. In short..its not looking good.

It would be helpful to find out if anyone here is suffering the same thing and what they are doing for themselves to try to live a normal life...or those who have a friend of family member that has it. I'd like to try to uplift him with stories from others, if I can.

Prayers for you and yours.

 

[Calypso Jones]

So sorry to hear this. I know nothing about it. Is it possible that in spite of this diagnosis that his doctor might help him with a small amount of anxiety medication and some good information. I would remind you also that there is power in prayer.

 

[Gracie]

It's been rough lately. For both of us. I am powerless. He has shut down mentally as well as physically. So we both just...wait I guess. And make do. But it's been extremely hard for both of us.

 

[Gracie]

Docs involved were so happy it was not lung cancer...but this shit is just as bad.

 

[Calypso Jones]

I know this is hard for you. Very hard. Many of us are praying for you. I know you feel helples right now. When you steel yourself up for this fight, look to nutrition for you both, some exercise. There are many healing scriptures in the bible.

 

[TNHarley]

Good luck to you guys

 

[Calypso Jones]

You're on my mind this morning Gracie Don't wait for your doctor to take the lead in this. You get in and search for information, enlist your friends and family. Don't give in to this. Take the bull by the horns. Praying for you now.

 

[JustAnotherNut]

Sorry Gracie, you guys have been thru so much already. Hugs to you both.


I don't have the first clue about this disease or how to combat it......but if he's not really eating well or going outside and is depressed, then nutrition may play a part in that. I know you're doing your best to take care of him and his needs but maybe some supplements of iron and Vitamin D would help and maybe have him go for a walk? or just sit outside in the sunshine for as long as he's able, to get some natural D??

 

[Gracie]

Sorry Gracie, you guys have been thru so much already. Hugs to you both.


I don't have the first clue about this disease or how to combat it......but if he's not really eating well or going outside and is depressed, then nutrition may play a part in that. I know you're doing your best to take care of him and his needs but maybe some supplements of iron and Vitamin D would help and maybe have him go for a walk? or just sit outside in the sunshine for as long as he's able, to get some natural D??

He won't budge from the apt at all now. Agoraphobia is setting in. Afraid he will have a panic attack, and feels safer in his room. Only time he comes out is when I take him to the doctor and even then he freaks out.
But, I make him a lot of smoothies, give him Vit D, B Complex, Vit C along with a lot of chocolate malt ovaltine..which has all that and more in every glass. Chicken broth, small piece of buttered bread, lots of electrolyte water. He is getting thinner, which is good. Less weight to haul around, easier to breathe.