Pulmonary Fibrosis Support Group

my husband suffers with that my dr said it was because of the lack of oxygen they have,that what causes it

Thank you for sharing Chelly6. Does your husband use a CPAP or is he on supplemental oxygen?

he is on a oxygen machine 24/7 if we go anywhere then i have to take the portables he is very poorly now though so dont really go out a lot

Chelly,

I'm very sorry to hear that. Thank you for helping me to understand this disease and what is associated with it. My prayers are with you and your husband. Please let me know if you ever need someone to talk to.

JenkG

My memory seems ok so far, but do experience a feeling of confusion at times. I am on high level of Prednisone which could cause the level of confusion and anxiety I guess, other than just knowing about the illness I have. I'm waiting for testing to see if I need Oxygen, but it was recommended when I was diagnosed 2 months ago, but getting through the medical system where I live can be slow it seems. The Prednisone is becoming less helpful in helping me breathe, especially when walking, so am looking forward to the oxygen issue to be resolved. Glad to hear your PFT levels are up, that's a good sign. Keep your chin up ... when I first learned I had this lung illness I felt so alone until I found this support group, it helps to talk to others and learn more about the disease, and of course to know we're not alone. Take care and the whole group is in my daily prayers.

You are correct. It helps when I talk to others who understand what I am going thru. I was only diagnosed 1 year ago, and it has been very difficult, because I suffer with PM and IDL. I often think about all of you, many who are experiencing tougher times than myself, and I want to say that I feel your pain and hope that you make the best of each day!

Your comment about reduced memory and lack of sufficient oxygen
makes sense to me. I have noticed a loss of memory since I've had
IPL. It especially pisses me off when I can't come up with a word to
complete a sentence or description. I will ask my pul. dr. next month
provided I can remember how to get to his office. I'm glad I have my
wife to complete my sentences and mapquest to get me where I want to go. However, I still remember my favorite scotch and where
to buy it. Some things you just can't let go.

Thanks for responding .. I do feel confused at times, uncoordinated, bump into walls a bit, and sometimes have to search for a word. Other times, because I've beeb on 40 mgs of Prednisone for 3 months, I feel jittery and anxious; but am so relieved that I am now being "tapered down" from the Prednisone and am only on 25 mgs as of today, although they've added Qvar to my many meds. Physically it's worse, but I am so afraid of what the Pred may be doing to my body, as a matter of fact my vision is weakending and I have started seeing "double vision" at times, so have an eye doctor appt. now to see if any damage is done. Hopefully it will be ok and I'll be off the Pred in another month. I get tested for oxygen November 3rd. It's been a challange getting the testing and treatment I need, but I feel like things are starting to come together with my treatment due to my persistence, and I feel happy and hopeful .. so if I forget something once in a while or run into a wall it's not a big deal to me, just happy to be breathing.Another big plus is that I can still drive my car too, so happy to hear you have that luxury as well, and as for the scotch .. imagine I'm toasting you and all the others in our condition for hanging in there and keeping the faith. Every day is indeed a gift. My best wishes to everyone!

Hi everyone, just a little side note regarding
memory loss-I was also having it and am not
at the point yet of needing oxygen with this
damn disease so couldn't figure it out. But then a friend told me that she had read that
aspertame ( an artificial sweetener in diet
drinks and food) was causing memory loss in a
lot of people. I did some research and sure
enough aspertame is some bad stuff. I asked
my doctor about it and he said that yes a lot of studies had shown that it was causing
memory loss and other brain damage. So I gave it up and maybe it's wishful thinking but memory seems to be better. If you use
products with aspertame ask your doctor and
see if giving them up helps. Heaven knows we
can use all the help we can get. You are all
in my prayers. lomo

Some of the chemicals in foods we eat probably do harm without people realizing it. I'm pretty sure mine is from the Prednisone level I'm on, just like walking into walls, etc. I seem to do a lot, but they've starting tapering my doses so I have high hopes of getting this highly effective, but still very dangerous drug out of my system. Another interesting food problem is the butter flavoring in microwave popcorn. Look up "popcorn lung". I used to eat that stuff almost daily, but no more.Thanks for keeping us aware of potential problems, because we sure don't need to add to our illness. Prayers and best wishes to you and the group.