Charlene, I use Asmanex.  I hardly ever cough and it has definitely improved my SOB.

I hope the block under your knees helps to make you more comfortable.

I can only lay flat for a short time, however my bed is not completely flat.  We have an adjustable one and it’s raised up a bit at the head.  But I go to my back when one of my nostrils plugs, which happens a lot when I go to bed.  It helps to clear it up especially when I use the Ayr saline, but it doesn’t always help.  It just magically… Read more

I’ve always been an outgoing person.  First to say hello, all that.  But now that I’m settled into this disease, I cherish the quiet.  It’s so opposite of my former way, yet I like it.  I still welcome visitors, but don’t want them to stay too long.  I don’t think it’s a bad thing because I enjoy it!  So I wholeheartedly stand and agree with you Charlotte.

Am very short of breath.  I think it’s because of the high pollen now.  Hopefully it will calm down for me.  I find the nebulizer very helpful.  Mine is mixed with Lbuterol and bromide. They used this in the hospital when I was in and I liked it better than just albuterol.  We have to mix the two together.  I usually have one every morning… Read more

Charlene, The infusions were recommended by my previous Pulmonologist because my immunoglobulin numbers were so low.  This Friday I have my sixth session.  It takes about four hours.  I feel somewhat stronger because of them and I’ve made it through the winter without getting sick.

My little machine is referred to as a nebulizer.  It’s like… Read more

I use an inhaler called BEVESPI.  I also have an inhaler machine and use Albuterol with bromide mixed together.  Also at the same time I am getting infusions to build my immune system.  For the last week or so, I am having trouble with congestion so I finally took 40mgs of prednisone today as that is about the only thing that helps me with… Read more

Denny, I changed cannulas to a shorter, fatter sort of stubby one and the runny nose stopped by about 90%!  And I find when I am active, I need to keep my mouth closed because if I don’t, the nose will start to run every time.  I have to keep reminding myself to shut my mouth.  LOL.  Hope this helps you too.

After my diagnosis and not really knowing very much about IPF, I looked to the internet.  The first thing I read was 3-5 years lifespan is the norm.  That scared the heck out of me.  So first of all, don’t even think about that because we are all different and many, many have lived way beyond that.  I’m in my third year and feel better about it… Read more