@lmull
-
Charlene Marshall replied to the topic Coughing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 10 months ago
Hi Liam,
Thank so much for sharing – yes those pseudomonas infections can be so scary for those of us with compromised lungs. Thankfully, I am on the mend now but not without switching antibiotics because the ones I was on was definitely making me worse.Take care and thanks for writing,
Char. -
Charlene Marshall posted a new activity comment 2 years, 7 months ago
Hi @lmull
I haven’t had a personal experience with pancreatitis, or that I could connect back to Ofev, however, I know that drug can have some wicked GI side effects. Do you have access to the Ofev nurses via their support line? It may be worth it to run this question by them, as they may have some other patient experiences to share for you. I…[Read more]
-
Bill Kelly replied to the topic DLCO level in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 11 months ago
Liam ( @lmull)
You don’t say what level O you need to exercise. I did extensive study into O supply for exercise about 3 years ago when I was told to expect 1 to 3 years of life, Far and away the best solution for exercise, unless you have very little impairment and don’t anticipate worsening, is liquid oxygen LOX. There is a direct re…[Read more]
-
Steve Dragoo replied to the topic DLCO level in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 11 months ago
Hi Liam,
It is possible you PAH which will make the heart rate increase fast. My DLCO is ok (don’t have results available now) but heart rate goes to 115 on mild exertion. I take a few things that I know help. If you are interested, please let me know – happy to help anyway I can. – Steve
-
Bill Kelly replied to the topic DLCO level in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 11 months ago
@lmull (Liam) DLCO results can vary with the technician and with how you blew. You can’t be certain you did it exactly the same way as last time. Over a span of several tests you should at least get the trend. However if you Google DLCO together with asking how it’s calculated you will find all sorts of things including medications and fa…[Read more]
-
Charlene Marshall replied to the topic DLCO level in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 11 months ago
Hi Liam, I posted this directly verbatim from Denny so you can see it. He had originally posted it as a status update instead of reply. Here is what he shared:
@lmull My DLCO is my bad number since my two pulmonologists diagnosed me with Usual Interstitial Pneumonitis (a form of IPF). However, my original number after diagnosis was 59% 2 years…[Read more]