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On Wednesday I had a CT scan to check on calcification in my heart Good news no calcification.....bad news evidence e of.pulmonary fibrosis. Now need to get a HDCT scan of.my lungs and an appointment with a pulmonologist. Anyone have any experience with this? Everything I have read is pretty scary. Thankz
I have a good friend with this...she has to take precautions...no smokey environments...stay inside on high pollen days, etc...but she's doing ok. I think the trick is a good doctor.
A relative has been diagnosed with that disease. From everything I read it is progressive and cannot be cured but there are drugs available to make you more comfortable. Life span 5 years, average 3 years from diagnosis often from complications such as a heart attack.
My husband has idiopathic lung disease due to rheumatoid arthritis. He has the fibrotic lung scarring that is actually quite severe now. His was first noticed in 2012 when he had many tests for the rheumatoid arthritis which came on very suddenly for him. Even then they noticed labored breathing on exam and unusual chest sounds so they did a CT scan. Not much came of this diagnosis as they were so focused on treating the rheumatoid arthritis.
Fast forward to 2020 and his symptoms started to become very concerning. He was very short of breath and struggling with walking up hills, stairs etc. He could no longer ride his mountain bike or do strenuous hikes. We used to do a lot of canoeing together and that stopped. His oxygen tested very low and one day a nurse showed up to our house with a large oxygen machine and portable tanks. He demonstrated how my husband should use them. It was a real shock for me when those entered our lives because I realized how serious it was getting. This last year he has gotten progressively worse. His baseline oxygen sats when he is at rest for some time is 90. Any activity, such as standing up, walking, lifting anything, will cause his oxygen to drop as low as upper 70s, low 80s and he will struggle to breath and gasp. He uses his portable oxygen more and more though not yet 24/7. He uses his oxygen machine every night unless we travel (which is rare). He is also on a medication for his lungs to slow progression but it isn't working. It's his third one we've tried.
Somehow he has made it ten years so far since it was first discovered in 2012, and he actually lived quite actively until around 2019. He is unable to do most physical activities beyond slow walking now, but he still keeps busy with some woodworking which isn't too strenuous, such as making cutting boards. He likes to do crafts with airplane models too. Little things he enjoys that keep his mind busy and occupied.
Eating is a struggle for him because it is hard to breath and eat. But also the meds he takes cause him to go to the bathroom more. Dr. said the energy just for him to breath burns far more calories than one would think. He has lost a lot of weight and I have been giving him supplemental Ensure and high calorie foods to try to help him but it's a losing battle.
This is a horrible disease. There is no cure except a lung transplant (we are still trying to find out if he qualifies because he has other immune deficiency issues that may make him ineligible). It is hard to watch someone you love slowly dying, suffering, losing the ability to do all the things they loved. Just to breath becomes a challenge and I can't even imagine how scary that is for him. He sleeps more and more and gets tired very easy. We get stares and questions from strangers when he goes out with his oxygen tanks. He was once extremely active and did ten wilderness canoe camping trips (I did 8 of them with him). It's been hard to watch him deteriorate but he still has a lot of life left in him. I pray for him every day. He isn't even 60 yet.
I found this thread because I was actually looking for advice on how to control the constant coughing. His doctor gave him some kind of spray but it doesn't work. He coughs more and more. That started some time last year and has been progressively worse.
My husband has idiopathic lung disease due to rheumatoid arthritis. He has the fibrotic lung scarring that is actually quite severe now. His was first noticed in 2012 when he had many tests for the rheumatoid arthritis which came on very suddenly for him. Even then they noticed labored breathing on exam and unusual chest sounds so they did a CT scan. Not much came of this diagnosis as they were so focused on treating the rheumatoid arthritis.
Fast forward to 2020 and his symptoms started to become very concerning. He was very short of breath and struggling with walking up hills, stairs etc. He could no longer ride his mountain bike or do strenuous hikes. We used to do a lot of canoeing together and that stopped. His oxygen tested very low and one day a nurse showed up to our house with a large oxygen machine and portable tanks. He demonstrated how my husband should use them. It was a real shock for me when those entered our lives because I realized how serious it was getting. This last year he has gotten progressively worse. His baseline oxygen sats when he is at rest for some time is 90. Any activity, such as standing up, walking, lifting anything, will cause his oxygen to drop as low as upper 70s, low 80s and he will struggle to breath and gasp. He uses his portable oxygen more and more though not yet 24/7. He uses his oxygen machine every night unless we travel (which is rare). He is also on a medication for his lungs to slow progression but it isn't working. It's his third one we've tried.
Somehow he has made it ten years so far since it was first discovered in 2012, and he actually lived quite actively until around 2019. He is unable to do most physical activities beyond slow walking now, but he still keeps busy with some woodworking which isn't too strenuous, such as making cutting boards. He likes to do crafts with airplane models too. Little things he enjoys that keep his mind busy and occupied.
Eating is a struggle for him because it is hard to breath and eat. But also the meds he takes cause him to go to the bathroom more. Dr. said the energy just for him to breath burns far more calories than one would think. He has lost a lot of weight and I have been giving him supplemental Ensure and high calorie foods to try to help him but it's a losing battle.
This is a horrible disease. There is no cure except a lung transplant (we are still trying to find out if he qualifies because he has other immune deficiency issues that may make him ineligible). It is hard to watch someone you love slowly dying, suffering, losing the ability to do all the things they loved. Just to breath becomes a challenge and I can't even imagine how scary that is for him. He sleeps more and more and gets tired very easy. We get stares and questions from strangers when he goes out with his oxygen tanks. He was once extremely active and did ten wilderness canoe camping trips (I did 8 of them with him). It's been hard to watch him deteriorate but he still has a lot of life left in him. I pray for him every day. He isn't even 60 yet.
I found this thread because I was actually looking for advice on how to control the constant coughing. His doctor gave him some kind of spray but it doesn't work. He coughs more and more. That started some time last year and has been progressively worse.
Dear Robin,
I am so sorry that you are going through this with your husband.
Best of wishes & HUGS going your way!
I am so sorry that you are going through this with your husband.
Best of wishes & HUGS going your way!
Take good care!
Countrylv22
Just to update, my husband had a double lung transplant at Cleveland Clinic on May 22nd and is doing very well! He was in really bad shape by the time we relocated there and thankfully was only on the lung transplant waiting list a week before a match was found. Unfortunately, pathology examined his old lungs piece by piece and found stage 3 lung cancer in one lung with spread into 22 of 40 dissected lymph nodes in lung pleura. No wonder he was so sick! At any rate, over the last five months they have done many tests, from PET scans to MRI brain to CT chest and so far no other cancer has been detected aside from what was removed with his old lungs. Nevertheless he did four rounds of chemotherapy to kill any potential microscopic cancer left behind, and now will follow up with screenings and checkups every three months for any cancer. He is still doing worlds better than he was before his transplant. It is truly a miracle to see him get his life back! Even if it is short term, to see him smile and walk again and hold himself upright without gasping for air is priceless. I thank God every day that he is still here!
My relative noted earlier had a double lung transplant at Stanford Hospital almost 4 years ago. He had a scare with RSV just as Covid arrived but after an extended stay in intensive care has been doing well. Family makes sure that no one has covid.
Polydatin alleviates bleomycin-induced pulmonary fibrosis and alters the gut microbiota in a mouse model
Polydatin effectively reduced the degree of fibrosis in a BLM-induced pulmonary fibrosis mouse model; BLM and/or polydatin affected the abundance of the dominant gut microbiota in mice. Moreover, faecal microbiota transplantation (FMT) from polydatin-treated BLM mice effectively alleviated lung fibrosis in BLM-treated ABx mice compared with FMT from BLM mice. Polydatin can reduce fibrosis and inflammation in a BLM-induced mouse pulmonary fibrosis model. The alteration of gut microbiota by polydatin may be involved in the therapeutic effect.
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Thanks for your post!
