[Charlene]

Hi, dx myself in 2020. I am on twice day Ofev. O2 at night. I too have this question on position of sleep— I am told his awful am and nitetime wet cough is Post nasal drip but it has persisted for a year now w no relief. Any thoughts appreciated. Due to a support grp on zoom thru this site- I am now going to get a second opinion on my situation and see if Rixu….. would be good for me. I have familial IPF.

thoughts on elevated head and Post N drip/cough appreciated. Chyna

[Charlene]

I have never heard to sleep elevated? I have an awful wet type productive cough at night and am told I have post nasal drip? I cough a lot and use oxy at night and sleep is restless and disrupted every few hours. Any input most welcome. I am single and feel a bit lost and lonely…. would love to talk w someone on occasion about IPF. I feel naive yet have had dx since 2020 appx.

I walk daily and am on Ofev bid. No side effects. 3 family members died w IPF. thank you for listening

/char in New mex

[Charlene]

I think i called Sam- steve. sorry. i cant figure out how these messages work ???? Char

[Charlene]

great question. I keep hearing this term but dont have any idea what it could look like but Steve gave me some insight. More examples would help me tho.

I have IPF since 2020 appx and have chosen to NOT have lung transplant–

I remain at home mostly so not a lot of exposure to others. I walk daily and i am on Ofev w little to no side effects. My mom and 2 brothers died of this disease.

I wondered if Steve who answered you has had a transplant or not as his longevity is hopeful.

Thank you for any help you can give me. I would love to speak w someone w the disease. I feel very alone. Char B. in new mex

[Charlene]

thank you for asking. I was diagnosed in 2020 due to a cough and now am deteriorating per the test assessments.

I am on Ofev. I need encouragement . I am fearful and anxious. I cant sleep due to cough. I am single and 64. I am not sure i want to chk into Lung transplant. Had 3 fam members w IPF also.

any words of encouragement would be helpful…..

I walk 3 miles per day on a treadmill at a moderately high incline. No Shortness of breath altho pulse ox. 86% when first up in a.m. Not on oxygen /yet….

help please, Chyna

[Charlene]

my mother died of IPF at age 72, My older bro. just died at age 70- “Cardiac” but not conclusive— 

My brother diagnosed w IPF about 6 yrs ago and anticipating a lung transplant.

I was diagnosed 2 years ago w IPF and chest biopsy.

My other sisters have a chronic cough although deny it and not diagnosed.

why does it matter if it is all the same prognosis and same treatments whether familial or not….?   I pray for a way to recover.

any one know about using Fungi for lung health?

 

Chyna

 

 

[Charlene]

i have been diagnosed bout yr ago and started on OFEV 150mg  2xd w no side effects.  cough now gone or nearly gone.   I had to beg and cajole to get the drug

my brother who has IPF also was on this drug 6 yrs and now progressing to need for transplant.

I am scared and feel fearful a lot.   my mom and brother died of I{PF and now my younger bro is on transplant list.

 

 

 

 

 

[Charlene]

yes, i do have IPF> yes i have a pulmonologist — I have had an open chest biopsy/lung biopsy. thank you for reaching out to me. I have fears of the prognosis and the progression.
I walk 4 miles per day uphill. (treadmill) and am thin./ My mom died of it and my brother has IPF also.
I seems sad to think of such a poor prognosis…. how long has your dad had it and how old is he? has he had to go into the hospital? often? please advise and thanks again for helping me. this is so helpful

[Charlene]

thank you for reaching out.   i appreciate your words very much.  I am thin and walk about 4 miles per day.  live in rural area and not much choice on Pulmonologist.   am getting my biopsy diagnoses this wk and med?

do u suggest going on meds asap ?