Pulmonary Fibrosis: How can we help our dad?

[Guest guest]

Dear all, My father-in-law, who is 79 years old and is just a month away from his 80th birthday, was hospitalized a week before Christmas because of shortness of breath. Though initially pneumonia was suspected, his X-rays and CT scans revealed scarring on one of his lungs (at least that's what we were told at that time). In a week he left home with oxygen-generating equipment and was told he would have to use it indefinitely. He was feeling good for a while, though last Friday I noticed that his skin was kind of yellowish and that he did not look that healthy. Me and my husband left for a short vacation and returned home yesterday to learn that our dad was hospitalized again on the New Year night! Same shortness of breath, pronounced yellowish colour, heart beat irregular. What we know so far (and we don't have an official diagnosis,

though the word 'fibrosis' was used by a doctor) is that is lungs are in trouble, that there is liver damage (we don't know why) and there is some infection going on. He is receiving antibiotics, IV and they are going to check out his gallbladder as well. My father-in-law had arthritis for years, and he did not receive any treatment for it. We know that his lung problems can be a result of that. He used to be a strong man, though when I met him, he was pretty thin. Now his weight loss is especially pronounced. We are aware of the fact that even if his current status improves (that is liver issues and infection are addressed), the diagnosis of pulmonary fibrosis is not good. But I told my husband that we should do whatever we possibly can to save the life of our dad. Just three weeks ago he was an energetic individual with alert mind and generally healthy (other than his arthritis). He did take some medications,

but I am not sure what exactly. I would appreciate very much your advice on this matter and thank in advance for your help. I wonder if you could comment on: 1) any supplements/vitamins that could boost him up; 2) any new treatments, for example, Pirfenidone; 3) lung transplant options - he may not be a good candidate, and in Canada (where we live) it will be probably hard to get it, but maybe he could get elsewhere; 4) your own experience or experience of your friends and loved ones with fighting this condition. Thank you and best of health to all of you. __________________________________________________

[Guest guest]

Hi . I'm sorry to hear about your Father-in-law. I can't speak to the many treatment issues related to PF. I was just DX'd this summer after a n open lung biopsy. I'm on oxygen also. 2 ltrs when relaxed, 5 when active. I have a complicated case so I havent gotten much in the way of treatment. One thing I do know from this and other PF forums is that inflammation is our biggest enemy. And that NAC is promising.

New Study Shows N-acetylcysteine (NAC) May Improve Treatment of IPF

Adding a high-dose antioxidant to standard drug therapy can improve lung function for patients with a serious respiratory disease called idiopathic pulmonary fibrosis.

http://www.coalitionforpf.org/AboutUs/pressroom/pr112805.asp

This article mentions NAC as treatment for Idiopathic Pulmonary Fibrosis. I also have RA and my Pulmo suggested I continue to take it after I told him I stated using it on my own. One thing I have learned is how important it is for him to be seen by a Interstitial Lung Disease specialist, not just a regular Pulmonologist.

You have difenately come to a good place here on breath support. There is a wealth of information and a lot of supportive, caring people. Take a look at some of the older posts and the links on the side of the webpage. Your Father-In-Law is fortunate to have such a caring Daughter -In-Law as you. What a blessing. For what its worth, I put together a page of info I've learned about PF, its at;

http://www.geocities.com/lynndebeal/coverpage.html

http://www.geocities.com/lynndebeal/PulmoFibro.html

As I said before though, there are many more people on this site who know alot more about this disease then I do. Heck, there are more people on this site who know more about this disease then most Doctors. *smile* My webpage is just a collection of websites and 1/10th of the info you'll find here. Its just got a lot of graphics, and a minor collection of info I've been able to understand thats all and my personal experience. I hope that helps.

Anyway, I hope that is helpful. You and your Husband are the best medicine he could have in my opinion. Supportive and loving family work wonders for our situations. AND, a specialist who knows what they are doing. Good luck, take care of yourselves. LynnA

>> Dear all,> > My father-in-law, who is 79 years old and is just a month away from his 80th birthday, was hospitalized a week before Christmas because of shortness of breath. Though initially pneumonia was suspected, his X-rays and CT scans revealed scarring on one of his lungs (at least that's what we were told at that time). In a week he left home with oxygen-generating equipment and was told he would have to use it indefinitely.> > He was feeling good for a while, though last Friday I noticed that his skin was kind of yellowish and that he did not look that healthy. Me and my husband left for a short vacation and returned home yesterday to learn that our dad was hospitalized again on the New Year night! Same shortness of breath, pronounced yellowish colour, heart beat irregular. What we know so far (and we don't have an official diagnosis, though the word 'fibrosis' was used by a doctor) is that is lungs are in trouble, that there is liver damage (we don't know why) and there is some infection going on. He is receiving antibiotics, IV and they are going to check out his gallbladder as well.> > My father-in-law had arthritis for years, and he did not receive any treatment for it. We know that his lung problems can be a result of that. He used to be a strong man, though when I met him, he was pretty thin. Now his weight loss is especially pronounced.> > We are aware of the fact that even if his current status improves (that is liver issues and infection are addressed), the diagnosis of pulmonary fibrosis is not good. But I told my husband that we should do whatever we possibly can to save the life of our dad. Just three weeks ago he was an energetic individual with alert mind and generally healthy (other than his arthritis). He did take some medications, but I am not sure what exactly.> > I would appreciate very much your advice on this matter and thank in advance for your help. I wonder if you could comment on:> > 1) any supplements/vitamins that could boost him up;> 2) any new treatments, for example, Pirfenidone;> 3) lung transplant options - he may not be a good candidate, and in Canada (where we live) it will be probably hard to get it, but maybe he could get elsewhere;> 4) your own experience or experience of your friends and loved ones with fighting this condition.> > Thank you and best of health to all of you.> > > > __________________________________________________>

[Guest guest]

To Lynne A: I went to the web pages you suggested. Girl, you have done your research. It was so well done. It looked like you did a lot of work on your web page. It has helped me a lot. Thanks Gale in TX

[Guest guest]

Thank you Gale. And thank you for signing my guestbook. HAd it not been for the amazing support and info I have found on this site and some other ones I would still be as clueless about PF. The MD's really don't anything about this disease. It's the people who life with it every day, day after day, year after year who are the real healers.

People like Leanne who have made a comittment to providing a safe and loving forum for us all.

I guess my webpages have been my way of wrapping my head around this disease and having been an educator & graphic artist over the last two decades, a way to give back some.

LynnA

Everybodies under the same cloud, if it rains on you, it rains on me.

>> To Lynne A: I went to the web pages you suggested. Girl, you have done > your research. It was so well done. It looked like you did a lot of work on > your web page. It has helped me a lot. Thanks Gale in TX>

[Guest guest]

What is your site again? The first time I went on I couldn't navigate real well but you said you fixed that and now I don't know how to access. I didn't get to sign the guest book cause I couldn't find it before...I'll try again. Sher

"Don't worry about tomorrow, God is already there"

Re: Pulmonary Fibrosis: How can we help our dad?

Thank you Gale. And thank you for signing my guestbook. HAd it not been for the amazing support and info I have found on this site and some other ones I would still be as clueless about PF. The MD's really don't anything about this disease. It's the people who life with it every day, day after day, year after year who are the real healers.

People like Leanne who have made a comittment to providing a safe and loving forum for us all.

I guess my webpages have been my way of wrapping my head around this disease and having been an educator & graphic artist over the last two decades, a way to give back some.

LynnA

Everybodies under the same cloud, if it rains on you, it rains on me.

>> To Lynne A: I went to the web pages you suggested. Girl, you have done > your research. It was so well done. It looked like you did a lot of work on > your web page. It has helped me a lot. Thanks Gale in TX>

[Guest guest]

I would like to thank all of you for your replies and especially to

LynnA. Your page is fantastic. I wish we knew about this disease

before, as our dad did have some coughing on the regular basis, and we

just thought it was like cleaning up his throat or something.

I apologize for not replying earlier. Both my husband and me have been

fighting flu, and we can't even go and visit dad, because we don't want

to pass the virus to him. He is still in the hospital and gets treated

for pneumonia. As it turned out, other than his lungs, he is in a

pretty good shape. All his bloodwork is good, heart rate stabilized,

major organs are healthy, and he eats and is in good spirit. He did not

sleep well, though, because his robe was not comfy, but now this

problem has been addressed, and we hope than he will be able to rest

better and hopefully fatten up a little bit.

Considering his lungs, doctors don't think he has years and years ahead

of him, but to be honest, I think that if they could fix his pneumonia

and strengthen his owerall stamina, then maybe we could start exploring

alternative options, such as experimental treatments, etc. One day at a

time.

Once again, thank you so much and I wish you all the best of health.

[Guest guest]

,

Get well...you and your guy. Hope your dad can beat the pneumonia. It is a bear for PFers! It is so sweet that you all take such good care of him.

Hugs, Joyce >> I would like to thank all of you for your replies and especially to > LynnA. Your page is fantastic. I wish we knew about this disease > before, as our dad did have some coughing on the regular basis, and we > just thought it was like cleaning up his throat or something.> > I apologize for not replying earlier. Both my husband and me have been > fighting flu, and we can't even go and visit dad, because we don't want > to pass the virus to him. He is still in the hospital and gets treated > for pneumonia. As it turned out, other than his lungs, he is in a > pretty good shape. All his bloodwork is good, heart rate stabilized, > major organs are healthy, and he eats and is in good spirit. He did not > sleep well, though, because his robe was not comfy, but now this > problem has been addressed, and we hope than he will be able to rest > better and hopefully fatten up a little bit.> > Considering his lungs, doctors don't think he has years and years ahead > of him, but to be honest, I think that if they could fix his pneumonia > and strengthen his owerall stamina, then maybe we could start exploring > alternative options, such as experimental treatments, etc. One day at a > time. > > Once again, thank you so much and I wish you all the best of health.> > >

[Guest guest]

Good to hear from you ! I'm so glad your Father-in-law has stablized. Thank you for your kind words, there is still so much I'm learning about this disease myself. Sorry to hear you and your hubby are dealing with the flu. Sometimes it all hits at once.

It always impresses me so deeply when I read of daughters, daughter-in-laws, adult children and siblings concerns for their loved ones with PF.

My mother and siblings reaction to my illness has unfortunately made my becoming estranged from her and them a neccessity at this time. It has been a very heart wrenching decision, I love her and miss her very much. I guess that is why I admire loving family members when I meet them.

Back to your FiL, his being in such good shape on other levels is a blessing. Please keep us posted. Take care of yourselves.

LynnA

>> I would like to thank all of you for your replies and especially to > LynnA. Your page is fantastic. I wish we knew about this disease > before, as our dad did have some coughing on the regular basis, and we > just thought it was like cleaning up his throat or something.> > I apologize for not replying earlier. Both my husband and me have been > fighting flu, and we can't even go and visit dad, because we don't want > to pass the virus to him. He is still in the hospital and gets treated > for pneumonia. As it turned out, other than his lungs, he is in a > pretty good shape. All his bloodwork is good, heart rate stabilized, > major organs are healthy, and he eats and is in good spirit. He did not > sleep well, though, because his robe was not comfy, but now this > problem has been addressed, and we hope than he will be able to rest > better and hopefully fatten up a little bit.> > Considering his lungs, doctors don't think he has years and years ahead > of him, but to be honest, I think that if they could fix his pneumonia > and strengthen his owerall stamina, then maybe we could start exploring > alternative options, such as experimental treatments, etc. One day at a > time. > > Once again, thank you so much and I wish you all the best of health.> > >