Pulmonary Fibrosis News Forums | Site-Wide Activity https://pulmonaryfibrosisnews.com/forums/activity/ Activity feed for the entire site. Sat, 04 Jul 2026 23:55:48 -0500 https://buddypress.org/?v=3.0.4 en-US 30 hourly 2 8f7ca2f82bfbdb84129288996a26d602 Community Member replied to the discussion Laser Therapy in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/laser-therapy-2/#post-39595 Sat, 04 Jul 2026 23:55:48 -0500 Reply to Laser Therapy

Hi WildBill,

I will post this here; however, it is not an endorsement of laser therapy. If you have IPF, please carefully read Andy Hall’s disclaimer that it is not a cure or a treatment. I also advise you to consult with your care team to determine if it is the right treatment for you.

https://summit-chiropractic.com/ipf/

]]> afa1f14cd71e0a381274e2914d6d93d1 Community Member started the discussion Laser Therapy in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/laser-therapy-2/ Sat, 04 Jul 2026 20:25:39 -0500 Laser Therapy

I intend to start therapy soon after reading all the favorable posts.

I have located a Chiropractor who has a Summus class 4 Laser.

Can someone let me know what Dr. Hall’s protocol is for the laser treatments?

]]> 2a006ed064f3b7ff2abc6dbdab05c337 Community Member replied to the discussion Lignosus in the forum Research and Development https://pulmonaryfibrosisnews.com/forums/groups/research-and-development/forum/topic/lignosus/#post-39593 Sat, 04 Jul 2026 19:46:26 -0500 Reply to Lignosus

I know I am late to this conversation. I went out to research the device she recommends, and I urge you to be cautious. Understanding she is a Naturalist, please consult your pulmonologist if you have not done this (even if you have). The device is essentially a humidifier, and adding humidity at this level could be damaging. It is not…

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]]> 77972ad5a81070680e93ae348b715c5c Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/#post-39591 Sat, 04 Jul 2026 02:07:58 -0500 Reply to Hospice Care and PF

Hi Camila,

Palliative care is covered by Medicare based on the order written by your doctor. That may be the best place to start to understand what your doctor has ordered. They can also advise whether curative therapies, such as pirfenidone, are supported.

Can you come back and let the group know what you learned?

Sam…

]]> 5cd5a6e4175738808196b921cbee21fa Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/#post-39590 Fri, 03 Jul 2026 02:00:41 -0500 Reply to Hospice Care and PF

I was diagnosed in 2022, and since then, I have been using Perfenidone. I didn’t have symptoms at all for the first 3 years, which confused the doctors. I had an exacerbation in December and ended up in the hospital. Now I am 24/7 on O2, 2 L. Any movement gives me extreme fatigue and coughing. In June, my doctor recommended hospice. …

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]]> db9773ced339fe62986d636c2c16e777 Community Member started the discussion Have you managed shingles with PF? in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/have-you-managed-shingles-with-pf/ Tue, 30 Jun 2026 20:25:50 -0500 Have you managed shingles with PF?

Writing a weekly column at Pulmonary Fibrosis News and moderating PF Forums does keep me busy. If you have pictured me writing from a cubicle farm, let me help adjust your vision.

I write from everywhere. I have written from ships, from a vacation rental at the beach, and from my home at Lake Anna in central Virginia.

Since June 22, I have…

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]]> 4382acd7fcc9d6963a9ba8e2e73a1f66 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47347/ Tue, 30 Jun 2026 16:49:35 -0500 1 1a32926b8023739980efd3025c23b275 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47346/ Tue, 30 Jun 2026 16:49:33 -0500 1 3a056efc34572db73c0f2acfae5cb395 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47345/ Tue, 30 Jun 2026 16:49:32 -0500 1 d312e7ec57288488038315ce944eefd6 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47344/ Tue, 30 Jun 2026 16:49:30 -0500 1 ca22534e1d8810a3231c97f380170ed8 Community Member posted an update: In 2023, CBS News, WTVR in Richmond, VA, ran a story […] https://pulmonaryfibrosisnews.com/forums/activity/p/47343/ Tue, 30 Jun 2026 01:05:36 -0500 In 2023, CBS News, WTVR in Richmond, VA, ran a story about my journey. The story was nominated for an Emmy. It was also included in a package that was nominated for and won an Emmy. Find your voice and share your story.

https://www.wtvr.com/news/local-news/sam-kirton-story-august-25-2023

wtvr.com

The many ways he thanks the stranger who saved his life: 'I don't know how a person could love me so much'

This is a story of shock and grief turned perseverance and triumph. The story of how Sam Kirton took jarring news turned it into a mission of doing good and paying it forward.

]]> 0 589ccf951e0fcd4435753225d94d7f7f Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/#post-39583 Sun, 28 Jun 2026 14:10:49 -0500 Reply to Hospice Care and PF

Yes

]]> d2045d1623e15392153c539e483abc46 Community Member replied to the discussion IPF mucus cough in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/ipf-mucus-cough/#post-39582 Sat, 27 Jun 2026 15:04:58 -0500 Reply to IPF mucus cough

I will ll suggest to my pulmonologist. i am now on Ofev 100 mg and newly added is Jasycad. This combination is causing extreme diarrhea , Nauseousness and the inability to eat. The doctor says just give a few months, but I feel like I’m losing weight day after today and I don’t know what the solution could be. Any suggestions would help me thank you.

]]> cebe6dc5736ea2572e92199e19da10a7 Community Member posted an update: three weeks ago I started taking 9 mg of Jascyd along […] https://pulmonaryfibrosisnews.com/forums/activity/p/47338/ Sat, 27 Jun 2026 13:39:51 -0500 three weeks ago I started taking 9 mg of Jascyd along with 100 mg of OFZeV. i’m really struggling with terrible nauseousness and ability to eat along with constant bouts of diarrhea. The fatigue is never ending and I’m trying to hold on as my pulmonologist suggested giving it three months. I don’t take them together, I’ve tried taking them…

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]]> 0 d5f3972fb357d8a911caf3702ea0f833 Community Member replied to the discussion Have you joined our new forum groups? in the forum Fun and General Chat https://pulmonaryfibrosisnews.com/forums/forums/topic/have-you-joined-our-new-forum-groups/#post-39581 Sat, 27 Jun 2026 01:10:06 -0500 Reply to Have you joined our new forum groups?

I would like to join the Research and Development group.

]]> d645d26246fbfd10dc95bfdf27b666d9 Community Member replied to the discussion POC rental for airplane in the forum PF Communities https://pulmonaryfibrosisnews.com/forums/forums/topic/poc-rental-for-airplane/#post-39580 Sat, 27 Jun 2026 01:04:16 -0500 Reply to POC rental for airplane

Update on flying to Alaska in May. I took the advice of my pulmonologist and lung transplant doctor concerning flying after a single lung transplant 4 years ago. I flew from BWI to SeaTac to Fairbanks with out any supplemental oxygen concentrator and had no problems with oxygen levels dropping. I was extremely exhausted though following the…

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]]> 0319a128788f57be49f5a28241dc955c Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/#post-39579 Fri, 26 Jun 2026 21:27:53 -0500 Reply to Hospice Care and PF

Please add me to your forum

Norm

]]> 2c1920b0f48980d4fed4facb40e96702 Community Member replied to the discussion Let's talk about supplemental oxygen in the forum Supplemental Oxygen and PF https://pulmonaryfibrosisnews.com/forums/forums/topic/lets-talk-about-supplemental-oxygen/#post-39578 Fri, 26 Jun 2026 19:27:02 -0500 Reply to Let's talk about supplemental oxygen

Hi, I’m 84 and was diagnosed 2013 with IPF. I’m currently on 5-6 ltrs of oxygen and up to 7 if doing a lot of activity. I’ve never seen anyone else diagnosed as long ago as I was so it’s nice to meet you.

Can you walk around or need a wheel chair or rider? Do you feel well, sleep ok. I can’t walk very far but can stay active in my home and…

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]]> 29fe131475f2ec1cf8f1d97c1a03ce00 Community Member posted an update: Have had few ILD flareups and needed accurate monitor […] https://pulmonaryfibrosisnews.com/forums/activity/p/47330/ Fri, 26 Jun 2026 16:30:52 -0500 Have had few ILD flareups and needed accurate monitor and finally after several that I tried and returned found two.

1.EMAY Sleep Oxygen Monitor with Built-in Recording Capability | Track Continuous Blood Oxygen Levels & Pulse Rate Overnight | Provides Sleep Report & Raw Data from Amazon. $47.60

2. Wrist-Worn Pulse Oximeter with…

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]]> 0 e67f7aaeddea241e0984316aa02eed7a Community Member posted an update: Have had few episodes of ILD flareups mostly […] https://pulmonaryfibrosisnews.com/forums/activity/p/47329/ Fri, 26 Jun 2026 16:20:54 -0500 Have had few episodes of ILD flareups mostly environmental. So looked for better accurate SPO2 monitors that also monitors while you sleep, not limited to spo2 but also for folks with sleep apnea. And monitors real-time and while you sleep and alarms when below threshhold set by you.

1. EMAY Sleep Oxygen Monitor with Built-in Recording…

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]]> 0 e1cf4fa9657331c5a7be3a163411927c Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47327/ Thu, 25 Jun 2026 16:52:01 -0500 1 946d0fa0a1161502ce8ed95c42ffdc88 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47321/ Tue, 23 Jun 2026 14:16:51 -0500 1 cad199d3a97da5bfd22a53e4ee2ae459 Community Member posted an update: Sam Kirton wanted to know if I have any sun issues. […] https://pulmonaryfibrosisnews.com/forums/activity/p/47317/ Mon, 22 Jun 2026 01:12:05 -0500 Sam Kirton wanted to know if I have any sun issues. Well, I don’t really spend much time in the sun. When in the sun I wear a big hat and a tee shirt so not much of my skin is exposed. My arms are tan but in my earlier years when I went to the beach a lot I always tanned.

]]> 1 bbfecd154018fad5f2acc79e2c4a4f08 Community Member posted an update: Has anyone heard or tried any clinical trials for ILD? https://pulmonaryfibrosisnews.com/forums/activity/p/47316/ Sun, 21 Jun 2026 21:43:53 -0500 Has anyone heard or tried any clinical trials for ILD?

]]> 4 eb8c81f6074d82136259529038df47cc Community Member posted an update: I've been on pirfenadone 3 years now. I started […] https://pulmonaryfibrosisnews.com/forums/activity/p/47312/ Sun, 21 Jun 2026 14:41:43 -0500 I’ve been on pirfenadone 3 years now. I started taking fiber suplements for the nausea and have been helped with Benefiber. My GI system is working much better. Let me know if it works for you.

]]> 1 3c537ea6459cd5d0e0c4b0b4210bb96c Community Member replied to the discussion Have you joined our new forum groups? in the forum Fun and General Chat https://pulmonaryfibrosisnews.com/forums/forums/topic/have-you-joined-our-new-forum-groups/#post-39571 Sun, 21 Jun 2026 03:43:19 -0500 Reply to Have you joined our new forum groups?

For any group you are interested in, you can click the request access feature or send me a note here with the name of the group you want to join. I will send you an invite to the group.

Sam…

]]> c0dda250af112caefdcfa17d25336164 Community Member posted an update: I recently ran into an issue with British Airways. […] https://pulmonaryfibrosisnews.com/forums/activity/p/47309/ Sat, 20 Jun 2026 23:09:08 -0500 I recently ran into an issue with British Airways. They confiscated one of my portable oxygen concentrator batteries.

It is a long way from Italy to Seattle so I need to travel with six batteries. I did this same trip last September and again this May with no issues. But this month, on my return flight, British Airways told me they…

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]]> 3 81354cf619fb8e9af59130bfa8e1159f Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/#post-39570 Sat, 20 Jun 2026 18:56:38 -0500 Reply to Hospice Care and PF

yes

]]> a8cb4c42fbc18d031b630986da17d68a Community Member posted an update: Yes https://pulmonaryfibrosisnews.com/forums/activity/p/47307/ Sat, 20 Jun 2026 15:42:25 -0500 Yes

]]> 0 b0430f90c6f9ec0d43cecc37757077c8 Community Member posted an update: I highly recommend Pulmonary Therapy. It has helped […] https://pulmonaryfibrosisnews.com/forums/activity/p/47305/ Sat, 20 Jun 2026 00:19:15 -0500 I highly recommend Pulmonary Therapy. It has helped me tremendously. I am on my second 36 week session.

]]> 0 53ae94b79b76d43da59a3ff998a80f9a Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/#post-39569 Fri, 19 Jun 2026 23:25:52 -0500 Reply to Hospice Care and PF

I’ve heard of people being put on liquid oxygen or a connector for two 10 L concentrators. How do they have you set up?

]]> 61d3e9c99070c1db8ac7e5a6ff9d5549 Community Member posted an update: I was diagnosed with both IPF and Pulmonary Hypertension […] https://pulmonaryfibrosisnews.com/forums/activity/p/47300/ Fri, 19 Jun 2026 20:36:20 -0500 I was diagnosed with both IPF and Pulmonary Hypertension in 2018 with life expectancy of 3-5 years, but I’m still going strong (with the help of Esbriet and Tyvaso). Both pulmonary doctors say my lungs are remaining stable with no marked deterioration, so am hopeful of a bit more time to enjoy life. I’m currently on 4 liters, and doing…

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]]> 1 9f34f4b4716baacb8a867f7ce9b3c1b6 Community Member posted an update: I have PF as a result of scleroderma. A couple years ago […] https://pulmonaryfibrosisnews.com/forums/activity/p/47299/ Fri, 19 Jun 2026 20:03:38 -0500 I have PF as a result of scleroderma. A couple years ago i noticed my heart rate would soar with minimal exertion. I followed up with a cardiologist who put me through every test he could think of and he has now given up trying to determine the cause, saying it is probably some weird effect of my autoimmune disease. This is frustrating to say…

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]]> 3 5074328d4401fb18011fdcbe54064130 Community Member replied to the discussion Have you joined our new forum groups? in the forum Fun and General Chat https://pulmonaryfibrosisnews.com/forums/forums/topic/have-you-joined-our-new-forum-groups/#post-39568 Fri, 19 Jun 2026 19:50:01 -0500 Reply to Have you joined our new forum groups?

How do you join a group?

]]> 16b95bb376c36be8cf7e415775d7ef1f Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/#post-39567 Fri, 19 Jun 2026 19:23:15 -0500 Reply to Hospice Care and PF

Yes

]]> 2f648b4b2b2fb3c809efda0aac9cd275 Community Member posted an update: I am wondering how other members are having issues […] https://pulmonaryfibrosisnews.com/forums/activity/p/47295/ Fri, 19 Jun 2026 19:19:16 -0500 I am wondering how other members are having issues with their spouses/partner’s way of dealing with our condition? My wife does not seem to be dealing with it very well sometimes and I feel like a burden. I don’t have anyone else to talk to about it.

]]> 2 177691d6e7ee72ad51d1671c66ccd9d2 Community Member started the discussion Have you joined our new forum groups? in the forum Fun and General Chat https://pulmonaryfibrosisnews.com/forums/forums/topic/have-you-joined-our-new-forum-groups/ Wed, 17 Jun 2026 21:17:08 -0500 Have you joined our new forum groups?

I am confident you have noticed several changes here in the PF News Forums, all designed to offer you a richer experience. Those improvements also extend to the five groups I have listed below. Look through the groups and their descriptions for any that might interest you. 

Only members can see comments or write comments in the…

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]]> f115b600826ffa2f1b82023237c469a6 Community Member started the discussion A chronology of my PF journey. What does yours look like? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/a-chronology-of-my-pf-journey-what-does-yours-look-like/ Tue, 16 Jun 2026 21:33:00 -0500 A chronology of my PF journey. What does yours look like?

I have noticed a number of members here in PF Forums and in other social media groups asking people to describe their journey. I would like to start a conversation about what we, as patients, experience. My only caveat is that each of our journeys is unique. 

What I experience won’t be a match for your experience. There can be…

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]]> 1ac317d98a3782b0753c554024bcf9d9 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47283/ Mon, 15 Jun 2026 21:04:57 -0500 1 457ae47e9da3277ef0acf7106a4e5187 Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47282/ Mon, 15 Jun 2026 20:59:40 -0500 1 12bd223bd691c1dceabaabfe1a26035a Community Member replied to the discussion Pulmonary rehab - wow or whoa in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/pulmonary-rehab-wow-or-whoa/#post-39562 Mon, 15 Jun 2026 17:39:10 -0500 Reply to Pulmonary rehab - wow or whoa

Yes

]]> 47b2393984a4ff27ea58b26ed4300c1f Community Member became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/47279/ Mon, 15 Jun 2026 14:50:36 -0500 1 db4fcb1e68d683caae00b35c552972de Community Member replied to the discussion Hospice Care and PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/hospice-care-and-pf/#post-39561 Sun, 14 Jun 2026 15:11:05 -0500 Reply to Hospice Care and PF

Yes Currently in palliative care. On 6 liters of oxygen.

]]> 0cd03debcdde1689bb9202dfc52d3179 Community Member posted an update: Yes for Hospice https://pulmonaryfibrosisnews.com/forums/activity/p/47277/ Sat, 13 Jun 2026 19:44:29 -0500 Yes for Hospice

]]> 1 a8b4688354966a0abb52ea25de95bb8f Community Member replied to the discussion Suspending pirfenidone in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/suspending-pirfenidone/#post-39560 Sat, 13 Jun 2026 15:34:44 -0500 Reply to Suspending pirfenidone

I’m not on perfinidone… but am on OFEV & Jascayd with same symptom… loss of appetite & lost 15 lbs in 2-1/2 months after being on Jascayd for several months. Solution was adding Kate Farms Standard 1.4 Nutrition drink (11 oz), $5.40/serving to daly diet… gained all the lost weight back with 3-servings/day and now maintaining weight at…

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]]> 228aa8e624b5513b53bf99a6571b2428 Community Member replied to the discussion Nasal Congestion and Pulmonary Fibrosis in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/nasal-congestion-pulmonary-fibrosis/#post-39559 Sat, 13 Jun 2026 15:16:25 -0500 Reply to Nasal Congestion and Pulmonary Fibrosis

I have been taking omerprazadole twice a day for a little over a week now along with with irpatropium, azalastine, and Flonase. I definitely feel better and I now longer experience painful swallowing in my esophagus. I still have the nearly constant congestion and throat clearing but it is better than it was. Thank you for that suggestion. I…

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]]> c1cea90ce9e3e5a34eadb98174e192fd Community Member posted an update: Yes for access to Hospice & IPF https://pulmonaryfibrosisnews.com/forums/activity/p/47274/ Sat, 13 Jun 2026 15:02:20 -0500 Yes for access to Hospice & IPF

]]> 0 0c70cad4876c5319d3db283a7f5597ab Community Member posted an update: Yes for info on Palative care https://pulmonaryfibrosisnews.com/forums/activity/p/47273/ Sat, 13 Jun 2026 13:48:51 -0500 Yes for info on Palative care

]]> 0 06d6a7aaafa9443ed48744a3778f9ee4 Community Member posted an update: I've been on pirfenadone about 3 years now. Was on […] https://pulmonaryfibrosisnews.com/forums/activity/p/47272/ Sat, 13 Jun 2026 13:15:36 -0500 I’ve been on pirfenadone about 3 years now. Was on Ofev but had to stop because of severe diarrhea and weight loss. Be mindful that you have to be on a good diet with this medicine. Alcohol is a no-no. Nausea was a real problem but had no diarrhea as with Ofev so that’s a plus. I started taking a fiber supplement and that has made a…

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]]> 0 4dd056de21ad6b215fa0e2d77dd35551 Community Member replied to the discussion Nasal Congestion and Pulmonary Fibrosis in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/nasal-congestion-pulmonary-fibrosis/#post-39558 Sat, 13 Jun 2026 13:11:43 -0500 Reply to Nasal Congestion and Pulmonary Fibrosis

Hi, I recently stopped OFEV. I’ve been on Jascayd for 5-6 months and the diarrhea had been more difficult to deal with. So pulmonologist said I could stop OFEV. Has Jascayd been approved in Australia? It is very easy to be on, no noticeable side effects for me. Has helped my quality of life being off OFEV. I have been declining slowly for last…

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