I have IPF. LabCorp cultured my sputem and yesterday evening reported I had a colony or pseudomonas aeruginosa in my lungs. What does this mean? What should I do for myself while waiting for the pulmonologist to weigh in? To protect others? And, in a related question, why do you always learn these things on Saturday night?
Rob, don't you hate learning these reports on the weekend?! As with any infection, it is good to wash hands well and for the people around to also practice good hand hygiene.
My husband who is 74 yrs old has been diagnosed with pulmonary fibrosis.
He was a welder for forty years.
His doctor put him on prednisone for a month, his cough went away, but he could not tolerate the medicine.
He just started another drug, Cellcept.
We are hoping this is a good fit for him.
My husband who is 74 yrs old has been diagnosed with pulmonary fibrosis.
He was a welder for forty years.
His doctor put him on prednisone for a month, his cough went away, but he could not tolerate the medicine.
He just started another drug, Cellcept.
We are hoping this is a good fit for him.
How kind of you to ask, we are doing well.
He is finishing his first week on Cellcept, 1000 mg a day, no side effects.
After the second week he will go to 2000 a day.
We pray there will not be any side effects.
My husband 61, was diagnosed with IPF in November of 2011, he is deteriorating very quickly, a set of lungs is his only hope. We have been turned down my Tampa General and Jackson Miami Hospital. He has to be an "otherwise Healthy being" the first dr we had did nothing, and now I find the issues he has are related to the IPF and disqualify him for lungs. I am desperate, I want him to live.....on and off of steroids and xanax, spent a week in hospital three weeks ago for respiratory failure. Anything anyone knows of to help, please send me info....
I have IPF as well from Ankylosing Spondylitis. It's attacked my entire body with spinal fusion from C2 to T3 and L1 to S1. My thoracic is fused ( bamboo) so basically entire spine fused. Now my rib cage and lungs are being attacked. On oxygen because saturation level is always 82 to 85 when I do any physical activity. This only started about 3 months ago. Any suggestions are welcome
I found out that I have PF about 2months ago. Had alot of test and blood work . The Dr. I have wants me on oxygen 24hrs a day but I have been fighting that. Now it looks like I will be giving in to the use of oxygen. Don't like the idea of there not being a cure other than lung transplant. I try to stay active by golfing softball and yard work, but sometimes its a alot of work where it didn't used to be that way. I will not sit home and be a veggie. I am 66 yrs old.Don't have a mayo clinic near me.
Hi from JackC , I have been on oxygen for only a few weeks but without it my saturation levels range from 77 to 85. Struggling to breath. I to am on it 24/7 but it sure beats the alternative. I don't qualify for a lung transplant since I have severe Ankylosing Spondylitis and am totally fused. Best hope is to enjoy what life I have left, that's my reality.
I have IPF as well from Ankylosing Spondylitis. It's attacked my entire body with spinal fusion from C2 to T3 and L1 to S1. My thoracic is fused ( bamboo) so basically entire spine fused. Now my rib cage and lungs are being attacked. On oxygen because saturation level is always 82 to 85 when I do any physical activity. This only started about 3 months ago. Any suggestions are welcome
I know the situation of having more than one bad thing and how it complicates treatment.
Do you know the Pulmonary Fibrosis Foundation? https://www.pulmonaryfibrosis.org/
The site offers lots of information and one can find a support group through them. I found one and they do zoom calls and have speakers.
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Rob, don't you hate learning these reports on the weekend?! As with any infection, it is good to wash hands well and for the people around to also practice good hand hygiene.
You might be interested in joining this related discussion:
- Diagnosed with pseudomonas aeruginosa infection in my lungs
https://connect.mayoclinic.org/discussion/diagnosed-with-pseudomonas-aeruginosa-infection-in-my-lungs/
Have you met with your pulmonologist in the meantime? What treatment is suggested?
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1 ReactionMy husband who is 74 yrs old has been diagnosed with pulmonary fibrosis.
He was a welder for forty years.
His doctor put him on prednisone for a month, his cough went away, but he could not tolerate the medicine.
He just started another drug, Cellcept.
We are hoping this is a good fit for him.
@pinetreestate, how is he doing on Cellcept? How are YOU doing?
How kind of you to ask, we are doing well.
He is finishing his first week on Cellcept, 1000 mg a day, no side effects.
After the second week he will go to 2000 a day.
We pray there will not be any side effects.
-
Like -
Helpful -
Hug
2 ReactionsI have IPF as well from Ankylosing Spondylitis. It's attacked my entire body with spinal fusion from C2 to T3 and L1 to S1. My thoracic is fused ( bamboo) so basically entire spine fused. Now my rib cage and lungs are being attacked. On oxygen because saturation level is always 82 to 85 when I do any physical activity. This only started about 3 months ago. Any suggestions are welcome
Hi from JackC , I have been on oxygen for only a few weeks but without it my saturation levels range from 77 to 85. Struggling to breath. I to am on it 24/7 but it sure beats the alternative. I don't qualify for a lung transplant since I have severe Ankylosing Spondylitis and am totally fused. Best hope is to enjoy what life I have left, that's my reality.
-
Like -
Helpful -
Hug
1 ReactionI know the situation of having more than one bad thing and how it complicates treatment.
Do you know the Pulmonary Fibrosis Foundation?
https://www.pulmonaryfibrosis.org/
The site offers lots of information and one can find a support group through them. I found one and they do zoom calls and have speakers.