Mom Has Interstitial Lung Disease - Anyone Know About It?

[Bob Gray]

Hey all,

I found out in mid November that my Mom has interstitial lung disease, something I'd happily never heard of until now. But now it's staring me straight in the face. I know we have a wide variety of folks on here, so I thought I'd put this out there and see if anyone knows about this and can tell me much about it. It sounds like it's similar to pulmonary fibrosis, but not quite the same. I've read a handful of websites, and basically it sounds like it's incurable, gradually gets worse until the person can't breathe, and there's only one drug that has a chance of even slowing it down much, prednosone. My Mom's been taking that the last few weeks, but it doesn't sound like it's having an impact, and may be having some bad side effects. She's been in the hospital the last few days, and things haven't gone real well. They wanted to send her to a hospice, but she wanted to go home, so they'll be making hospice arrangements in the next days for her to go home. The wife and I will likely be heading up to Bemidji soon to see her. So, anyway, if someone with some medical knowledge or has known someone with it, any insights would be much appreciated. Thanks.

Bob

[MarkEagleUSA]

Originally Posted by Bob Gray

I found out in mid November that my Mom has interstitial lung disease

That's just terrible news. I'll be sure to include your mom in my prayers.

As someone diagnosed with emphysema one year ago, I'm very sensistive to hearing of any type of lung disorder. I must say I don't know much about ILD other than what I just read about it. A few of the symptoms are the same as what I have been dealing with.

[eddieshack23]

In 1988 I contracted a severe pneumonia and was subsequently given the diagnosis of ILD I took a high dose of prednisone and cytoxan among others I'm still here and last year I played soccer for the first time in 22 years .I was initially given 3-10 years . #1 tell mom never to give up .#2 If possible go to National Jewish Hosp. in Denver The "Mecca " to pulmonologists. My prayers and best wishes to your mom

[sagard]

Best of luck to your mom Bob.

[UMDBulldogHockeyIsKing]

Sorry to read this Bob. Hope all is well with her.

I am familiar with the term, but unfamiliar with what it does.

[MinnesotaNorthStar]

Originally Posted by Bob Gray

Hey all,

I found out in mid November that my Mom has interstitial lung disease, something I'd happily never heard of until now. But now it's staring me straight in the face. I know we have a wide variety of folks on here, so I thought I'd put this out there and see if anyone knows about this and can tell me much about it. It sounds like it's similar to pulmonary fibrosis, but not quite the same. I've read a handful of websites, and basically it sounds like it's incurable, gradually gets worse until the person can't breathe, and there's only one drug that has a chance of even slowing it down much, prednosone. My Mom's been taking that the last few weeks, but it doesn't sound like it's having an impact, and may be having some bad side effects. She's been in the hospital the last few days, and things haven't gone real well. They wanted to send her to a hospice, but she wanted to go home, so they'll be making hospice arrangements in the next days for her to go home. The wife and I will likely be heading up to Bemidji soon to see her. So, anyway, if someone with some medical knowledge or has known someone with it, any insights would be much appreciated. Thanks.

Bob

Sorry to hear that Bob.

[Greyeagle]

Originally Posted by eddieshack23

In 1988 I contracted a severe pneumonia and was subsequently given the diagnosis of ILD I took a high dose of prednisone and cytoxan among others I'm still here and last year I played soccer for the first time in 22 years .I was initially given 3-10 years . #1 tell mom never to give up .#2 If possible go to National Jewish Hosp. in Denver The "Mecca " to pulmonologists. My prayers and best wishes to your mom

Congratulations!
The breadth of knowledge on this board never ceases to amaze me.

[Bob Gray]

Well, unfortunately it appears my Mom's case is quite advanced. The doctors have decided in the last day or so that there's nothing more they can do for her, so they're setting up hospice for her at home for her remaining time. They've cranked her oxygen level way up to keep getting her enough oxygen. We'll be heading up to Bemidji shortly to spend some time with her. At least my new wife will get a bit of time with her. Thanks for the kinds words.

[eddieshack23]

Dear Bob,
So sorry to hear your mom's condition is so advanced.The prayer lamp is lit and your in my thoughts . I leave you with a few lines from a prayer to Ste.Anne .
O Good Ste.Anne,you wanted to be known as the hope for the sick,the mother of the infirm and the help of the afflicted. You posses the marvellous secret to nourish our confidence and our desire to live,even though sickness may darken our horizon.